presentación de trabajos - ICPCN Conference Buenos Aires

Transcription

The 2nd ICPCN Conference
Children’s Palliative Care ...Now!
Segunda Conferencia
Internacional de ICPCN
Cuidados Paliativos Pediátricos
...AHORA!
ABSTRACTS
PRESENTACIÓN DE
TRABAJOS
18 - 21 May 2016
BUENOS AIRES
ARGENTINA
18 - 21 de mayo de 2016
ABSTRACTS
2nd ICPCN Conference 2016
1
INDEX / ÍNDICE
Plenary Sessions ............................................................................
Children’s Palliative Care in the Latin American Region
Cuidados Paliativos De Los Niños en América Latina
Children’s Palliative Care NOW for the 21st Century
The Impact on Society of a Child with a Life Limiting Condition
Genetics and its Implications for Palliative Care
Perinatal Palliative Care
Why we need a Human Rights Perspective, NOW!
The Growth of Education in CPC
Treatment of Neuropathic Pain & use of Adjuvant Analgesia in Children
Debate: Decision Making at the End of Life
Debate: Should Palliative Care Be Available from the Time of Diagnosis
or just at the End Of Life?
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Concurrent Sessions ......................................................................
11
Poster Presentations .....................................................................
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PLEASE NOTE THAT ABSTRACT CONTENT HAS NOT BEEN EDITED FOR SPELLING AND
GRAMMAR. THEY APPEAR AS THEY WERE RECEIVED FROM THE AUTHOR/S.
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PRESENTACIÓN DE TRABAJOS
Segunda Conferencia Internacional de ICPCN
PLENARY SESSIONS / SESIÓN PLENARIA
Liliana de Lima (Director)
INTERNATIONAL HOSPICE & PALLIATIVE CARE ASSOCIATION (IAHPC)
CHILDREN’S PALLIATIVE CARE IN THE LATIN AMERICAN REGION
Two years ago, the Latin American Association for Palliative Care (ALCP)
published the Atlas of Palliative Care (PC) in Latin America (LA). The Atlas
provides an overview of the status of PC in LA according to the WHO public
health strategy: policies, medicine availability, education, and implementation
of services. The results indicate that there is significant variation among the 19 countries
included in the study and that strategies to support and develop PC require tailored approaches.
However, the first edition of the Atlas did not include specific information about children’s PC
(CPC). Hence, the information currently available is very limited.
During 2015, the ALCP implemented a second phase of the Atlas focusing on service provision,
education and availability of medications. For this 2nd edition, specific questions about pediatric
services were included in the surveys.
Purpose
The purpose of this plenary is to present the state of CPC development in Latin America.
The objectives of this presentation are to:
1. Provide information on the status of CPC development, including service provision, access
to medicines and compare them with the rest of the world.
2. Identify success stories from Latin American countries, and how they may be used by other
countries in the Region and of the world.
3. Present the challenges that the Latin American countries face in the development and
advancement of CPC, and possible ways to overcome them
4. Explore ways in which international organizations may collaborate with ICPCN, the ALCP and
other National Associations
After this presentation, participants will have a better understanding as to how Latin America
compares to other Regions of the world and the ways in which mutual collaboration may provide
beneficial for the development of children’s palliative care globally.
CUIDADOS PALIATIVOS DE LOS NIÑOS EN AMÉRICA LATINA
Hace dos años, la Asociación Latinoamericana de Cuidados Paliativos (ALCP) publicó el Atlas de
Cuidados Paliativos (CP) en América Latina (AL). El Atlas ofrece una visión general de la situación
de la PC en LA acuerdo con la estrategia de salud pública de la OMS: políticas, la disponibilidad
de medicamentos, educación, y la ejecución de servicios. Los resultados indican que existe
una variación significativa entre los 19 países incluidos en el estudio y que las estrategias
para apoyar y desarrollar CP requieren enfoques adaptados. Sin embargo, la primera edición
del Atlas no incluía información específica acerca de los CP para niños (CPC). Por lo tanto, la
información disponible en la actualidad es muy limitada.
Durante 2015, el ALCP implementó la segunda fase del Atlas que se centra en la prestación
de servicios, educación y disponibilidad de medicamentos. En esta 2ª edición, se incluyeron
preguntas específicas acerca de los servicios pediátricos en las encuestas.
Propósito
El propósito de este plenaria es presentar el estado de desarrollo de CPC en América Latina.
Los objetivos de esta presentación son:
1. Proporcionar información sobre el estado de desarrollo de la CPC, incluyendo la prestación
de servicios, el acceso a los medicamentos y compararlos con el resto del mundo.
2. Identificar las historias de éxito de los países de América Latina, y cómo pueden servir de
ejemplo por otros países de la región y del mundo.
3. Presentar los retos que los países de América Latina enfrentan en el desarrollo y avance de
la CPC, y las posibles formas de superarlos.
4. Explorar las formas en que las organizaciones internacionales pueden colaborar con ICPCN,
la ALCP y otras asociaciones nacionales.
ABSTRACTS
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Después de esta presentación, los participantes tendrán una mejor comprensión de cómo
América Latina se compara con otras regiones del mundo y las formas en que puede proporcionar
una colaboración mutua y beneficiosa para el desarrollo de los cuidados paliativos para niños
en todo el mundo.
Joan Marson
CEO
INTERNATIONAL CHILDREN’S PALLIATIVE CARE NETWORK (ICPCN)
CHILDREN’S PALLIATIVE CARE NOW FOR THE 21ST CENTURY
The world is changing rapidly. New health emergencies such as Ebola and
Zika virus, and humanitarian crises leading to massive displacement of people,
challenge our ability to reach children with life-limiting conditions. The global
palliative care response is growing and palliative care is being integrated into the work of a
number of international NGOs whose primary focus is specific conditions such as Cancer, HIV
and Disabilities. While the importance and value of palliative care is acknowledged by most
organization, the practical implementation is often lacking. Few funders support palliative care
at present and children’s hospices and palliative care programmes are struggling to survive or
develop. Of great value has been the impact of the 2014 WHA Resolution on Palliative Care and
the commitment of WHO to support development.
While 98% of children requiring palliative care are living in low and middle –income countries
(WHO) , most resources to provide palliative care as well as educational opportunities and
conferences are in high-income countries. Now more than ever we have a responsibility to
work together for the integration of palliative care for children into health systems, whether
they be established national health systems, or those responding to humanitarian emergencies.
Collaboration and a willingness to share resources is key to reaching every child who needs
palliative care now.
Raul Mercer MD MSc
Pediatrician, epidemiologist, public health specialist
LATIN AMERICAN SCHOOL OF SOCIAL SCIENCES
CHILD HEALTH IN TRANSITION CONTEXTS IN ARGENTINA
Transitional phenomena in health are expressed differentially in the profiles of
morbidity and mortality (epidemiological transition), in population patterns that
are consequence of migration and growth (demographic transition), in models
of economic adjustment product the impact of neoliberalism (economic transition), changes in
behavioral patterns resulting from globalization (cultural transition) and paradigm shifts specifically
associated with the exercise of citizenship (transition from needs to rights). In this sense, the health
of children in Argentina also expresses changes from the progressive reduction of child mortality as
a result of the control of prevalent diseases and a progressive increase in chronic noncommunicable
diseases. This transition shows a differential expression of territorial characteristics attending health
gradients resulting from existing inequities and not only in Argentina, but in the Latin American
Region as an expression social exclusion, the region with greater inequities globally.
LA SALUD INFANTIL Y ADOLESCENTE EN CONTEXTOS TRANSICIONALES EN ARGENTINA
Los fenómenos transicionales en salud se expresan de forma diferencial en el campo de los
perfiles de morbi-mortalidad (transición epidemiológica), en los patrones poblacionales producto
de los fenómenos migratorios y de crecimiento vegetativo (transición demográfica), en los
modelos de ajuste económico producto del impacto del neoliberalismo (transición económica),
en los patrones de comportamiento producto de la globalización (transición cultural) y de los
cambios en los paradigmas asociados específicamente al ejercicio de la ciudadanía (transición de
necesidades a derechos). En este sentido, la salud de la niñez en la Argentina también expresa
sus cambios a partir de la reducción progresiva de la mortalidad infantil como consecuencia de
patologías prevalentes y un aumento progresivo de las enfermedades crónicas no transmisibles.
Esta transición muestra una expresión diferencial de carácter territorial atendiendo a los
gradientes de salud que resultan de las inequidades y fenómenos de exclusión social existentes
no solo en Argentina, sino en el contexto latinoamericano, siendo esta región la de mayores
inequidades a nivel global.
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Dra. María Susana Ciruzzi, PhD
Especialista en Bioética; Doctora de la Universidad de Buenos Aires Área
Derecho Penal. Docente Universitaria grado y posgrado, Dirección Asociada de
Asuntos Jurídicos
THE IMPACT ON SOCIETY OF A CHILD WITH A LIFE-LIMITING
CONDITION
Health is a reality that has worried mankind from the beginning of history, but
its content and concept has been reshaped all the way through. It results from a construction
which gathers together historical, social, cultural, philosophical, economical, political and
normative components.
When talking about health and medical treatment, there’s still a dominion of a strong biological
model which focus more on organic functions than on social and cultural determinants. The
advance of social sciences has widened this view and helped us understand there’s a process
health/disease which incorporates another fact that impacts on health, mainly taken into
account that health and disease refer to a particular person in a particular vital and personal
circumstance that only belongs to him.
Assisting patients with terminal, critical or life-threatening illness poses a great challenge for
health team because they are faced with the impossibility of cure when traditionally this has
been their main (and seems to be unique) duty. This confronts desire and intention with the
reality of human beings as mortal: death is a fact that, whether sooner or later, will happen to
each one of us. Most of the time, we’ll be able to postpone death, but there’ll come a time when
death will happen. This certainty usually makes medical doctors feel frustration, because their
perception is that a patient’s death is their own failure as professionals. They can’t bear in mind
that death is the natural end of a human being. That we die because we are alive. In fact, we
are a being to death (Heidegger, 1963).
But terminal illness is also challenging for patient and families. They’re suddenly confronted
with their own mortality, with their spiritual and personal beliefs and is a reminder that eternity
just belongs to a religious conception, but life –as a biological phenomena- is absolutely finite.
Nevertheless, these odds should not interfere with the whole picture and all the possibilities of
treatments we have at end of life: it’s true that medical first duty is to cure, but when cure is no
longer a chance because science can’t cure all, when illness can’t be fought, we still have lots of
tools at hand to guarantee dignity and quality of life. To ease pain, to comfort the patient and
his family, to stand by their side during dying process, they are all different kind of treatments
that some physicians regard as minor, inferior or less important. Our experience states that
those measures are valuable and suitable, and constitute true therapeutic alternatives to help
relieving anguish and suffering.
There are other worries in a patient’s life, apart from trying to keep himself alive. His priorities
include avoiding suffering, nurturing relations with his love ones, awareness and feeling still
useful for family and friends. Our system, based on technology, has failed in fulfilling these
needs, and its cost goes far beyond a couple of dollars, because the hardest issue we face
in this sense is not a matter of economical expenses but mainly how can we build a medical
system that can help dying patients to achieve what really matters for them at the end of life.
In the past, a man’s death was surrounded by pre-established customs. The Ars Moriendi, was
the “art of dying”, a Latin book from 1415 well known all along Europe. To reaffirm faith, to
regret sins, to give out properties, to fulfill last wishes, were all very crucial decisions and those
guides were very helpful for families and friends to achieve and respect patient’s priorities at
the end of life.
Victor Penchaszadeh, MD
Former professor of genetics and bioethics at Columbia University, USA, and
National University of La Matanza, Argentina.
GENETICS AND ITS IMPLICATIONS FOR PALLIATIVE CARE
Among the many pediatric conditions that may require palliative care at
some point in their evolution, genetic disorders stand out as for a significant
proportion of them therapeutic advances have been slow to come. Most
advances in the field of medical genetics have occurred mostly in areas related to diagnosis
and prediction, and less in treatment. We are witnessing the paradox that while diagnostic
ABSTRACTS
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and predictive tools based on genetic knowledge are developing rapidly, treatment and care of
affected infants, children and adolescents are not improving at the same pace. The relentless
course of some of these conditions towards deterioration and death require palliative care
approaches in which preservation of human dignity and human rights goes hand in hand with
avoidance of futile efforts and maximization of comfort. Furthermore, when genetic defects
are involved, guilt feelings of parents and healthy siblings are prone to interfere with coping
mechanisms of families. Psychosocial support in these circumstances is part and parcel of
palliative care. Genetic testing in these scenarios should be guided by the analytical validity,
clinical validity and clinical utility of particular tests, with due respect both for the family’s right
to know and right not to know a particular result, specially when it will not alter management
or prognosis. Non-directive genetic counseling offers parents and siblings of affected children
the opportunity of learning about recurrence risks and empowers them to make informed
autonomous reproductive decisions. The fact that a particular condition requiring palliative
care has a genetic etiology should not affect in the least the ethical principles of autonomy,
beneficence and non-maleficence, as well as the humane care that all children and their families
deserve, avoiding stigmatization and discrimination.
Alexandra Mancini
Pan London Lead Nurse for Neonatal Palliative Care
CHELSEA & WESTMINSTER FOUNDATION TRUST AND THE TRUE COLOURS TRUST
PERINATAL PALLIATIVE CARE
The goal of all healthcare professionals involved in perinatal care is to sustain
life and restore health, but when this is not possible, infants and their families
should still receive the best possible care available during life, including before
birth, at the time of death and beyond. The life span of infants with life limiting and life
threatening conditions may extend from minutes to weeks, to months and even many years.
However long or short, care must always be tailored to the individual needs of the infant and
their family with the most appropriately skilled healthcare professionals involved who work
collaboratively (Mancini et al 2014)
Perinatal Palliative Care is further described as ‘the holistic , multi-disciplinary care for a fetus,
infant, and their family following antenatal or postnatal diagnosis of life-limiting conditions,
providing integrated ongoing support through pregnancy, delivery, postnatally and where
appropriate, continuing bereavement care’ (BAPM 2010) This may also sometimes be referred
to as supportive or comfort care.
Whilst all care must be individualised for each infant and their family, consideration must be
given to the family wishes being central to decision making; supporting and facilitating family’s
wishes; providing families with all the information available on choice and resources available to
them , so they may make informed decisions; including an approach which is non-judgemental;
flexible care plans; time and support for creating memories involving all family members in the
location of their choice wherever possible.
This period of time is an opportunity for healthcare professionals to provide valuable information,
support and guidance alongside families working in partnership.
Diederik Lohman
Associate Director
HUMAN RIGHTS WATCH
WHY WE NEED A HUMAN RIGHTS PERSPECTIVE NOW!
Tens of millions of people, including millions of children, living with cancer,
HIV, and other health conditions suffer from moderate to severe pain and
other debilitating symptoms. These symptoms undermine quality of life of
both patients and their families. Palliative care can alleviate or control most symptoms but its
availability, especially for children, is very limited in much of the world.
Over the past eight years, Human Rights Watch has interviewed hundreds of people with lifelimiting illnesses, including numerous children, in a dozen countries to document the impact of
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lack of palliative care on people’s lives. We found that interviewees often said that their pain
was simply unbearable, often describing their experiences in similar terms as torture victims.
Some said they became suicidal and a number attempted or committed suicide.
Under international human rights law, countries have a legal obligation to take reasonable steps
to overcome policy barriers to the provision of palliative care. An analysis of policy reasons
for the limited availability of palliative care in these countries shows that common barriers
included, among others, poor integration of palliative care into health policies and programs,
poor instruction for healthcare workers, complex and unnecessarily restrictive drug control
regulations that complicate supply and prescription of controlled medications, and the elevated
cost of medications in many countries.
Many countries have failed to take reasonable steps to address these barriers, resulting in
violations of the right to health and, in some cases, the prohibition of cruel, inhuman and
degrading treatment.
While governments have a legal obligation to address the palliative care needs of populations,
sustained advocacy by civil society groups is essential to ensure countries fulfill these legal
obligations.
Dr Liz Gwyther
CEO
HOSPICE PALLIATIVE CARE ASSOCIATION OF SOUTH AFRICA (HPCA)
THE GROWTH OF EDUCATION IN CPC
Recognising the unique issues regarding provision of care to children, palliative
care clinicians and educators have developed training courses for health care
workers caring for children and their families. Training courses have been
developed and adapted according to the needs of health care workers in different countries and
different settings. This presentation will look at specifics of palliative care training in Africa, from
care worker training to health professional training and highlight particular aspects of training
that suit different contexts. In addition, a scan of international issues will be presented including
the innovative approaches undertaken by ICPCN. The tools are there, we need to promote uptake
of training in generalist and paediatric education courses to ensure children and families needing
palliative care receive the best possible care and effective support at a difficult time in their lives.
Stefan J. Friedrichsdorf, MD, FAAP
Associate Professor of Pediatrics, University of Minnesota
CHILDREN’S HOSPITALS AND CLINICS OF MINNESOTA, MINNEAPOLIS, MN
(U.S.A.)
THE TREATMENT OF NEUROPATHIC PAIN AND THE USE OF ADJUVANT
ANALGESIA IN CHILDREN
Children in pain with serious illnesses may experience nociceptive, visceral,
chronic, psycho-social-spiritual and/or neuropathic pain. The differential is rather important, as
the analgesic management for each pain type differs, and in fact many children may experience
different pain types concurrently.
This session reviews the multi-modal treatment of neuropathic pain. The presentation covers a
miscellaneous group of pharmacologic agents aimed to manage neuropathic pain in children.
A step-by-step approach for these drugs including opioids, corticosteroids, antidepressants,
gabapentinoids, alpha-agonist, NMDA-receptor-channel antagonists, general anesthetics
for neuropathic pain management is presented. Integrative treatment modalities, such as
acupressure, acupuncture, biofeedback, hypnosis, diaphragmatic breathing and progressive
muscle relaxation and their role in state-of-the art pain management is discussed. The
importance of rehabilitation, psychology, sleep hygiene will be covered.
Objectives:
(1) Appreciate high prevalence of neuropathic pain children with serious illnesses
(2) Define neuropathic pain and describe main causes in pediatric patients
(3) Develop a step-by-step treatment approach for neuropathic pain
ABSTRACTS
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DEBATE: DECISION MAKING AT THE END OF LIFE
Dr Eduard Verhagen (The Netherlands) and Dr Richard Hain (United Kingdom)
Dr Eduard Verhagen
Attorney and Medical Director
DEPT. OF PAEDIATRICS AT THE UNIVERSITY MEDICAL CENTRE, GRONINGEN,
THE NETHERLANDS
DECISION MAKING AT THE END OF LIFE
End-of-life decision-making in the Netherlands has been studied very intensely
over the last 15-20 years. The first nation-wide surveys in 1995 and 2001
showed that the majority of infants younger than 12 months of age died because life-sustaining
treatment was withheld or withdrawn, mostly in situations were death was imminent. In the
remaining group of patients (around 35%), the decision was made for quality of life reasons and
concerned patients who might otherwise have lived if this treatment had not been withheld or
withdrawn. Those studies also showed that in extraordinary cases, medication was administered
with the explicit intention to hasten death.
Our group developed an approach to identify situations in which hastening of death might
be appropriate and published the protocol for this in the New England Journal of Medicine
in 2005. It’s publication immediately generated an international controversy and forced
doctors to analyze the differences between the existing approaches in palliative care that
are common in many countries, such as withholding or withdrawing of life sustaining
treatments (including artificial feeding and hydration) or the administration of high doses
of narcotics to relieve suffering, and the Dutch approach of actually giving lethal medication
to end life.
This ‘protocol’ was adopted by the government and transformed into legal formal regulation.
In the following years, comparative studies and national surveys were performed to monitor
changes in pediatric end-of-life care. The results, in turn, were used to improve he existing
regulation. This approach of regulating end-of-life care, based on thorough knowledge of
medical practice in combination with frequent national surveys to monitor the effect of
interventions seems to work for the Netherlands. It has enabled healthcare providers and
policy-makers of that country to demonstrate that legalization of (newborn) euthanasia does
not necessarily lead to widespread misuse, as was predicted by opponents of decriminalization
of euthanasia.
Dr Richard Hain
Consultant and Lead Clinician in Paediatric Palliative Medicine and Visiting
Professor
UNIVERSITY OF SOUTH WALES
DECISION MAKING AT THE END OF LIFE
Those requesting a change in the law that would allow children to be actively
killed usually argue one or more of three principles: compassion, personal
autonomy, and utility. The argument for compassion is that the death of the child furthers the
interests of the child (and/or the child’s family) more than her continuing existence does. The
argument for personal autonomy is that parents have a right to choose whether or not to take
on the burden of caring for their child. The argument for utility is that the child’s death will
benefit society generally more than her continuing existence would.
The arguments are well-meaning. But for them to work, those principles must flow from
more fundamental claims that are deeply problematic to professionals working in children’s
palliative care. The idea that suffering is inevitable in a dying child, or that a child might have
no interests at all, or that the interests - even preferences - of her parents should outweigh any
interests she might have. The claim that a child’s parents have authority to choose not to keep
her if she is damaged. The belief that in practice doctors caring for children with life-limiting
conditions already kill them by hastening their death with sedatives and analgesics. Finally, the
conviction that the purpose of a person is to support society, and that her value depends on the
extent to which she can achieve it.
Euthanasia is not palliative care.
Euthanasia asks: “What good will this child’s continuing
existence do anyone ? ”. It is the wrong question. Palliative care asks instead: “How can we
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best care for this vulnerable and suffering child ?”. Through compassion, palliative care sets out
to minimise the suffering of a child’s dying, not by extinguishing the sufferer, but by maximising
the pleasure in her living.
DEBATE: SHOULD PALLIATIVE CARE BE AVAILABLE FROM THE TIME OF DIAGNOSIS
OR JUST AT THE END OF LIFE?
Dr. Rodolfo Verna (Argentina) and Prof. Hanneke Brits (South Africa)
Dr. Rodolfo Verna,
Palliative Care Unit
GARRAHAN J P PAEDIATRIC HOSPITAL
SHOULD PALLIATIVE CARE BE AVAILABLE FROM THE TIME OF
DIAGNOSIS OR JUST AT THE END OF LIFE?
Palliative care (PC) was first used for terminal patients, as a compassionate
approach. With time, the changes in the course of diseases and improved
knowledge, the new definition included patients with a life-threatening or life-limiting disease.
Having said that, we are at a PC Congress and surely we all coincide that CP should be offered
from diagnosis onward. If this concept would be broadened to an approach that does not take
either prognosis or severity of the illness into account, I believe that here the issue is questioning
a new approach to patients in general. With this criterion, would you still need palliative care?
A holistic approach is not a synonym for palliative care. I consider this concept too broad.
Death is each time more hidden in society and has a trend towards disappearing, while it is such
a crucial moment in the life of a human being. Who doesn’t remember the circumstances of the
death of a loved one. if we, as PC physicians, do not pay enough attention to death, wouldn’t
we be hiding it too?
Taking into account our reality, on the one hand the different places where PC is practiced - at
home, at hospital or hospice - have their leitmotiv or mission: to care for patients at the end of
life. Nevertheless, the development of pediatric PC, although uneven, is generally quite poor.
In my country less than 10 % of the patients who would be a candidate actually receive PC.
On the other hand, in the society as well as among health care providers, the concept of PC has
not been fully assimilated. Thus, by broadening the reach of our specialty, are we not increasing
the confusion?
In my country we have a saying “el que mucho abarca, poco aprieta”, or in English “don’t bite
off more than you can chew”.
Prof. Hanneke Brits
Principal Specialist/Medical Doctor
UNIVERSITY OF THE FREE STATE
SHOULD PALLIATIVE CARE BE AVAILABLE FROM THE TIME OF
DIAGNOSIS OR JUST AT THE END OF LIFE?
I’m sure most of you will argue that palliative care should be available from
the time of diagnosis of a life limiting or life threatening disease, as stated in
the WHO definition for Palliative care. Due to country specific definitions and different funding
models, some may argue that it should be available at least at the end of life. I would like to
differ with both!
I work as a Family Physician in emergency Obstetrics and Pediatrics, as well as in Pediatric
Palliative care physician. The question is how do I bring the two together, and the answer is
very easy: I believe that every patient should receive the best holistic, individualized care
at every contact with a health care worker, irrespective of their disease or the reason for the
consultation, acute or chronic, whether it be at home, clinic, hospice, hospital or intensive care
unit (my definition of palliative care).
ABSTRACTS
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These definitions and terms are very important for policy makers, politicians and advocates,
and different countries use different definitions and words for palliative care, end of life care,
hospice care and terminal care to make it culturally and economically acceptable and feasible.
The time of diagnosis may also differ depending on the resources and expertise in different
countries. Case studies will be used for the discussion.
Case 1: Pregnant mother with antenatal diagnosis of congenital abnormality.
Case 2: A 13 year old orphan boy with terminal HIV and structural lung disease.
Case 3: A 6 year old girl from a very rural area with a metastatic cancer.
The answer: Whatever you want or may call it: The best holistic, individualised care should
be rendered to each patient, irrespective of the diagnosis or prognosis, beginning or end of life.
Father Rick Bauer
Priest
MARYKNOLL FATHERS AND BROTHERS
SPIRITUALITY IN CHILDREN’S PALLIATIVE CARE
From the very beginnings of the Palliative Care movement, Spirituality has been
considered an essential component for holistic palliative care service provision.
Yet too often, health care workers, parents and children misunderstand the
difference between spirituality and religion or spiritual care and proselytizing. This plenary
session will describe the basic components of spiritual care as well as current research and
global thinking on this important area of practice and emphasize patient-centered spiritual
care rather than provider-centered spiritual care. I will discuss some common definitions
and understandings of spirituality and patient-centered spiritual care provided within a variety
of pluralistic settings. I’ll discuss briefly the importance of spiritual assessment and some
interventions for spiritual care. The need for increased research into evidence-based pediatric
spiritual care will be highlighted.
10 PRESENTACIÓN DE TRABAJOS
CONCURRENT SESSIONS
THURSDAY 19 MAY 11:00 - 12:30
/
SESIONES SIMULTÁNEAS
JUEVES 19 DE MAYO 11:00 - 12:30
HOW CAN SCHOOLS HELP SUPPORT THE BROTHERS AND SISTERS OF CHILDREN WITH
PALLIATIVE CARE CONDITIONS?
ALDRIDGE, Jan
MARTIN HOUSE CHILDREN`S HOSPICE UK
Background: Primary schools are frequently a significant emotional resource for children, as
well as supporting their more formal learning. When one child in a family has a life-shortening
condition then schools can have a significant role with the other children. This was found to be
the case in a 3 year longitudinal study carried out in the UK with brothers and sisters of children
with palliative care needs. These children were often protective of their families, avoided putting
further strain on them with their needs and tended to `compartmentalise` their lives. They
appreciated school as a safe haven. Some teachers, however, reported feeling unsure how best
to support these children, both before and after the death of their sibling.
Aims: The aim was to increase teachers` understanding of the needs, experiences and coping
strategies of the siblings and how these might impact upon their educational performance and
behaviour in school.
Methods: A booklet was drafted for schools which incorporated the key findings from the
longitudinal study, together with other key resources, in a format which was engaging and
accessible for busy teachers. The draft was piloted with teachers of differing ages and experience
and with lecturers responsible for training teachers.The resource was further developed in the
light of their experience.
Results: Over 2000 booklets have been provided to primary schools. The tailored information
has been well received by teachers and the ongoing feedback is positive.
Conclusion/Discussion: Schools play an important role in the lives of the brothers and sisters
of children with palliative care needs, both before and after the death of their sibling.They
appreciate support in this role with targeted materials of up to date research.
FAMILY AND VOLUNTEERS PERSPECTIVES ISLAND HOSPICE AND HEALTHCARE
NDLELA, Tando
ISLAND HOSPICE AND HEALTH CARE
Background: The work was undertaken to explore factors that contribute to discontinuation of
medication namely, Anti Retro Virals, when children approach adolescence. This age group has
observed abandonment of medication.
Aims: Aim of the study was to identify issues that contribute to adolescents’ failure to continue
taking Anti Retro Virals from Volunteers, families and/or guardians.
Methods: The study approach was a qualitative enquiry from carers, guardians and volunteers
who were purposively selected. The key role of the volunteers is to support patients when
taking medications, provide counselling and act as a link between families and volunteers, to
ensure the continued progress of patients. Emerging themes are that the children who have
never known their HIV status tend to deliberately abandon their treatment for fear of being
ridiculed by their peers or suffer the sudden onset of depression compared to the children who
have been told of their status earlier in life. The commonality between families and volunteers
is satisfaction in caring for sick children and seeing improvements in managing their problems,
however volunteers are more objective in assessing children’s behaviours. Girls are of particular
concern, as some tend to abandon their medication once they are in relationships. In Shona
ABSTRACTS 11
culture it is known as KUTIZIRA when young girls go and stay with boyfriends.
Results: The results found that if there is cohesive persuasion of families to disclose to children
at an early stage, there might be better uptake and continuation of medication resulting in
improved quality of care.
Conclusion/Discussion: In conclusion, from an experiential point of view from day to day
contact with patients and clients, those that have disclosed to their children earlier in life seem
to be more accepting and embracing their status. There is need for families to communicate
effectively with adolescents early in life.
BLACK AND MINORITY ETHNIC (BME) CHILDREN WITH LIFE-LIMITING CONDITIONS
(AND THEIR FAMILIES) - WHO SUPPORTS THEM?
KENT, Wahida
CARDIFF UNIVERSITY
Background: There is a dearth of research in this area, and academic debate lacks the voice of
the parents of these children. Presently professionals and academics can only base their ideas
and practices on anecdotal evidence. This coupled with low take-up of formal support services
from such families in the UK, and the statistics which show that BME children in the UK have a
higher incidence of life-limiting conditions, this has become an important area to explore.
Aims: To establish where the families of BME children with life-limiting conditions receive
support from. To seek their views on any barriers that they may come across, when accessing
formal support, such as hospice care. Enabling the families to have a voice in terms of their
preferences and choices, and how these are affected by religion, culture, and spiritual beliefs.
Exploring the views of professionals working in this areas, in terms of ethnic stereotyping.
Establishing if BME families rely on and receive community or extended family support. Is this
an option for them? Looking at positive strategies for over-coming barriers for such families,
with the families themselves, as well as professionals.
Methods: Mixed methods approach will be undertaken. Qualitative research will involve faceto-face, semi-structured in-depth interviews with 20 parents of BME children with life-limiting
conditions. Also 10 interviews with professionals working in this area. Quantitative element will
look at the dataset, UK Millennium Cohort Study, Waves 2 and 3. It will be a cross-sectional
analysis of BME children with long term illnesses, and the support services they access. A
comparison will be made between patterns of service take up between BME and White families
Results: None yet. This research is in progress. Due to the sensitive nature of this research,
ethical approval has been a lengthy process. Without this, I am unable to start interviewing. I
anticipate ethical approval in the next couple of weeks and am positioned to start data collection
immediately. I am confident that I will have collected all my data, and undertaken sufficient
analysis to present findings at the May 2016 conference.
CHILDREN’S HOSPICES AND VOLUNTEERING
POTTERS, Andre
MAPPA MONDO (THE NETHERLANDS)
Aims or goal: Children’s Hospices, where children with diseases which shorten life expectancy
find a place of comfort and where end of life care can be given, provide a lot of opportunities
for volunteers. The Dutch Childrens’ Hospice, Mappa Mondo, has a lot of experience in using
volunteers: the lessons learned can be used all around the world.
Design, methods and approach: Volunteers in a Childrens’ Hospice provide the domestic
atmosphere, they provide “normality”. They provide the extras that nurse practitioners and
other professionals cannot give during a shift. Volunteers help with bathing, clothing, driving,
baking, cooking, creative activities and lots of other useful activities during the day. One of the
great misconceptions held by doctors, parents and nurse practitioners about voluntary work
is that volunteers practice medical treatment. Let us be clear about that: volunteers DO NOT
provide medical treatment.
Results: Some things to take into account There are some challenges for organizations
working with volunteers; how to make sure that you find the ‘right’ volunteers? How you can
bind them to your organisation? How you manage the daily activities with volunteers, parents,
professionals and children? How do you deal with difficult situations; you cannot prepare
someone for everything.
Conclusion/Lessons learned: Lessons and discussion Almost 20 years experience of working
with volunteers in this sort of situation, has given us a certain overview. Mappa Mondo has
learned some important lessons that we want to share. The first one is that Childrens’ Hospices
cannot do without volunteers’ help. The second is that training and attention to the volunteers’
needs demand a large range of organisation skills. Third, parents professionals should work
together with volunteers with the goal of meeting the childrens’ needs.
“MY NAME IS FRANKIE AND I’M A VOLUNTEER”
PERRY, Ann-marie | SIMMONS, Bronwen | CLARKE, Sarah | MATHER, Annabelle
BEAR COTTAGE CHILDREN’S HOSPICE
Aims or goal: To highlight the impact of a single volunteer on children & families in a children’s
hospice.
Design, methods and approach: Personal Experience
Results: My name is Frankie. I have volunteered at Bear Cottage Children’s Hospice for the
last four years. My role is to bring joy where there is sadness, laughter where there are tears,
hope where there is despair and comfort in the darkness. Sounds like a mammoth task and in
truth it is. Yet, each child that smiles brings joy to those around and therein lays my reward.
My training was comprehensive. I learnt how to conduct myself in a professional and caring
manner. I learnt not to intrude but rather to offer just the right amount of friendship. I learnt
to respect the diversity of families and work within boundaries. I was taught to be patient and
above all to be kind. I greet every visitor to Bear Cottage in the same friendly and welcoming
manner. I find it creates a homely and non-threatening environment. Even those unsure of my
role soon warm to my bubbly personality. I am especially attuned to bereaved Mothers. I feel
their loss in an indescribable way and I seek to offer solas. There is such healing in touch and
companionship. Sometimes I simply sit by their sides, silent & unyielding, emanating care and
compassion. I work many hours and seek no recompense. A gentle word or gesture makes it
all worthwhile. I know I will remain at Bear Cottage until I retire. I have much to give, many
children to meet and happiness to share. The road I travel is long but the friends I make along
the way shine bright on the horizon. My name is Frankie. I am an assistance dog and I live at
Bear Cottage.
Conclusion/Lessons learned: Having an assistance dog as part of the team at Bear Cottage
Children’s Hospice adds to the home like atmosphere we aim to create. Without words, Frankie
brings joy and laughter, comfort and support.
: Having an assistance dog as part of the team at Bear Cottage Children’s Hospice adds to
the home like atmosphere we aim to create. Without words, Frankie brings joy and laughter,
comfort and support.
ABSTRACTS 13
THURSDAY 19 MAY 14.30-16.00
JUEVES 19 DE MAYO 14:30 - 16:00
PALLIATIVE CARE IN FETAL MEDICINE: A SYSTEMATIC REVIEW - GAI - GROUP OF
STUDY ON PERINATAL PALLIATIVE CARE
CATANIA, Taisa Rocha(1) | BERNARDES, Lisandra Stein(1) | BENUTE, Glaucia Guerra(2) |
GIBELLI, Maria Augusta Bento Cicaroni(1) | NASCIMENTO, Nathalia Bertolassi(3) | BARBOSA,
Tercilia Virginia Aprecida(4) | KREBS, Vera Lucia Jornada(5) | FRANCISCO, Rossana P V(1)
DEPARTMENT OF OBSTETRICS AND GYNECOLOGY, UNIVERSITY OF SÃO PAULO, SÃO PAULO,
BRAZIL (1); DIVISION OF PSYCHOLOGY, CLINICS HOSPITAL, UNIVERSITY OF SÃO PAULO,
SÃO PAULO, BRAZIL (2); NURSE DIVISION, CLINICS HOSPITAL, UNIVERSITY OF SÃO PAULO
(3); DIVISION OF SOCIAL WORKER, CLINICS HOSPITAL, UNIVERSITY OF SÃO PAULO (4);
DEPARTMENT OF PEDIATRICS, CLINICS HOSPITAL, UNIVERSITY OF SÃO PAULO, SÃO PAULO,
BRAZIL (5)
Background: Prenatal diagnosis of a congenital malformation occurs in 2% of pregnancies.
When lethal malformation is diagnosed during pregnancy, parents have to deal with the difficult
decision whether to continue pregnancy or to choose for medical abortion when it is legally
allowed. However, a considerable amount of pregnancies occur in countries with restrictive
legislation for abortion. Irrespective of the world regions we are referring to, families facing
severe fetal malformations need to make choices and cope with an overwhelming potential
number of issues ranging from fear of social non-acceptance, diversion in opinion in the couple,
and care and support of other siblings facing the death of a brother or sister during childhood.
Prenatal palliative care may allow a possibility of following these families in a pathway from
diagnosis to the bereavement of a lost child.
Aims: To perform a systematic review of published data on prenatal palliative care.
Methods: PUBMED and Scielo where searched with the keywords ‘perinatal’ ‘prenatal’ ‘fetal’
and ‘palliative care’. Language was restricted to English, Portuguese and French. Studies with
no description of the prenatal period, with no report of palliative care and case reports where
excluded from the analysis.
Results: A total of 300 articles met the terms searched. After complete analysis 22 articles met
the criteria for entering the study. The articles included focused on proposing fetal selection
for prenatal palliative care, the evaluation of prognosis, decision making by parents, prenatal
counseling, birth and care in the birth room.
Conclusion/Discussion: Prenatal palliative care is a growing field. Literature on long-term
impact on families is still lacking.
PERINATAL PALLIATIVE CARE; CONNECTING THE HEART, LIFE AND SPIRIT TO THE
PERINATAL DIAGNOSIS
CROMWELL, Kathleen
NOT DISCLOSED
Aims or goal: Technological advances have allowed for an unborn child’s life limiting conditions
to be diagnosed in pregnancy, yet medical interventions often do not exist for curative
measures,palliative care services can begin at the time of diagnosis. This presentation serves to
outline specific interventions to be utilized by the care team from the time of diagnosis, through
the life of the baby, and on the journey of grief.
Design, methods and approach: Presentation will have both lecture and interactive
components. Presenter will use case stories gained through experience gained over the past 13
years, to illustrate interventions and models of care, coupled with best practices.
Results: Learning/Behavioral Objectives: 1. Participants will be able to describe the unique
roles of the palliative care team in caring for babies and their families beginning in pregnancy.
2. Participants will be able to identify intervention techniques to be utilized throughout care of
the patient and family to include bereavement follow up. 3. Participants will be able to identify
common reactions of families beginning at the time of diagnosis and extending through grief.
4. Participants will be able to identify ways to collaborate and provide coordination of care with
other care providers and community agencies. 5.Participants will be able to identify self care
strategies that are important in working with perinatal hospice patients and families.
Conclusion/Lessons learned: Although many organizations provide pediatric palliative and
hospice care, incorporating a perinatal program can provide a more supportive and comprehensive
continuum of care. Providing services at the time of diagnosis, allows families to receive the
support of a team that can assist them in planning for the birth, life and death of the baby and
the provision of the emotional support often allows for healthier grief outcomes. Families report
feeling a sense of control in a situation that initially often feels very out of control as we assist
them to welcome and care for their baby and when necessary, to say good-bye.
SUPPORT AND CRITICAL COMMUNICATION IN THE PARENTAL PERINATAL DEATH
EXPERIENCE ON NICU
JONES, Kerry
UNIVERSITY OF EXETER MEDICAL SCHOOL
Background: The death of a child following stillbirth, premature birth or neonatal admission
represents for many parents, an unexpected and challenging event. Health professionals in
maternity and neonatal services are often involved in with patient’s families during such difficult
times and can mediate parental responses to their infant’s death. A vital aspect of this care is
the recognition of the significance of the death of their infant.
Aims: Explore the varying ways in which parents give meaning to their experiences in light of
existing discourses regarding parenthood, grief, loss, in medical and health care encounters
and how health care providers respond to this loss.
Methods: In drawing on parental experiences, a voice centred relational method was employed
to analyse data from 30 semi structured interviews and six focus group discussions with parents.
This particular method as framed by Brown and Gilligan (1993) is one of relational ontology
as based on the premise that humans are embedded in a web of complex and intimate social
relations.
Results: Parents identified several domains which were deemed to be highly salient and
influential to the care received prior to and around the time of the death of the infant. These
included relationship building, demonstration of effort and competence, information exchange
and level of parental involvement. Parents also identified coordination of care of both infant and
parents as an important domain.
Conclusion/Discussion: The death of an infant is an extremely painful loss for parents to
live with. This research suggests that the care received by parents during the hospitalisation of
their child and around the time of their death can have a profound impact upon their experience
of care. This critical time needs to be handled sensitively with the focus on the needs of the
family and infant and in supporting staff to provide such care.
CUIDADOS PALIATIVOS PERINATALES: APORTES DE UNA INTERVENCIÓN TEMPRANA
DOUMIC, Lara Penélope | ACOSTA, Felipe | KIMAN, Rut | SERLIN, Judith | MARINO, Andrea |
AGUILAR, Marcelo
HOSPITAL NACIONAL ALEJANDRO POSADAS
Background: Los avances científico-tecnológicos permiten una detección cada vez más precoz
de patologías complejas que ponen en riesgo la vida del feto. Los Servicios de Obstetricia
y Neonatología del Hospital Posadas percibieron la oportunidad de incorporar los Cuidados
Paliativos, con la finalidad de minimizar situaciones de sufrimiento físico, emocional y espiritual,
ABSTRACTS 15
tanto en el feto, recién nacido, como en las madres y equipos primarios tratantes.
Aims: Describir las intervenciones efectuadas por el Equipo de Cuidados Paliativos Pediátricos
ante un diagnóstico perinatal de patología amenazante para la vida. Identificar diferencias en
el seguimiento según el momento de la solicitud de interconsulta (prenatal o postnatal).
Methods: Estudio observacional, descriptivo. Revisión del total de historias clínicas de pacientes
derivadas durante un año (septiembre 2014/octubre 1015) por el Servicio de Obstetricia. Las
variables cuantitativas se presentan como medida de tendencia central y variables categóricas
como medidas de frecuencia (porcentajes). Se utilizó Statistical Package for the Social Sciences
(SPSS) version 11.5 (2002).
Results: Fueron derivadas 100 embarazadas, con una mediana de edad de 24 años (14 y
41). Edad gestacional entre 13 y 39 semanas. 55/100 pacientes fueron seguidas a partir de
su derivación, 50 desde la etapa prenatal y sólo 5 postnatal. Los diagnósticos más frecuentes
fueron: enanismo tanatofórico, malformaciones cerebrales complejas, gemelos toracopagos,
cardiopatías congénitas de mal pronóstico, mielomeningocele de ubicación torácica, gastrosquisis,
hidrops fetal y síndromes genéticos, entre otros.
Conclusion/Discussion: Cuando los cuidados paliativos se aplicaron tempranamente en el
curso del embarazo, el dispositivo interdisciplinario se centró en el manejo de la incertidumbre
diagnóstica y/o pronóstica y en propiciar la incorporación del bebé en la historia familiar. La
continuidad en el seguimiento permitió operar sobre la búsqueda de sentido y el duelo por
el “hijo imaginado”. Se desprende la necesidad de elaborar una planificación conjunta entre
los diferentes actores, que abarque la problemática emergente del aumento de patologías
obstétricas.
INTEGRACIÓN DE CUIDADOS PALIATIVOS PERINATALES EN UNA MATERNIDAD:
CINCO AÑOS DE EXPERIENCIA
RUFO, Rita | ETTLIN, Giselle | BOCCARATO, Adriana | DE LEON, Claudia | BRANDARIZ, Margarita
| LUJAMBIO, Magdalena
HOSPITAL PEREIRA ROSSELL
Background: La alta morbimortalidad determina que los cuidados paliativos perinatales sean
una necesidad.
Aims: Describir población incluida , funciones, logros y dificultades para proponer mejoras.
Methods: Estudio descriptivo, retrospectivo; período 1/07/ 2010 al 1/07 2015.
Results: EQUIPO (MODELO ABIERTO) N=. 9 integrantes 1 cargo completo ;POBLACIÓN N
374 familias, duplicando el n ° en el segundo período. PATOLOGÍAS: 3 grupos mayoritarios
Malformaciones y/o–cromosomopatías 178 (48 %); Prematurez 109 (29%); Síndrome hipóxico
– isquémico 30 (8%), Por grupo ACT dificil N 370 I 42% II 18% III 23% IV 16%. En 2014
se captó 90 % de neonatos que fallecieron y 30 % de los óbitos. FUNCIÓN ASISTENCIAL:
tratamiento de síntomas difíciles, apoyo toma de decisiones, intervención en crisis. DOCENTE:
primer curso obligatorio para residentes. Se ha dificultado la docencia al resto del personal.
NORMATIVA: Protocolización de asistencia a los grupos predominantes. ACADEMICA: 3
posters:(1 primer premio) y 1 publicación. LOGROS: Creciente demanda; protocolización de la
asitencia en tres grupos predominantes lo que permite una abordaje precoz. DIFICULTADES:
El rápido crecimiento , la falta de aumento de recursos humanos y de área física repercuten en
la asistencia. Dificultad en la captación de poblaciones prenatales diferentes a malformaciones.
Conclusion/Discussion: En cinco años se incluyen 374 familias y se distinguen tres grupos
predominantes de patologías. Dificultades en la clasificación de ACT. Equipo variable . La
asistencia ha menoscabado otras funciones. Logros. El mayor reconocimiento de las condiciones
de inclusión y protocolización de la asistencia en grupos predominantes facilitan un abordaje
precoz. Inclusión en el programa de postgrado. Dificultades. La desproporción entre demanda y
personal especializado sumado a la falta de área física dificultan la tarea asistencial. PROPUESTAS:
Investigar una clasificación específica. Capacitación en gestión. Normatizar asistencia en otros
escenarios. Promover la docencia a otros actores.
ESCENA FINAL DE VIDA: LA MUERTE COMO ACTOR DE REPARTO
BERIZO, Candela | COLOMBO PAZ, Guadalupe | GUARESTI, Germán | LEMONAO, Nélida |
NESPRAL, Alejandro
HOSPITAL ZONAL BARILOCHE
Aims or goal: Relatar experiencias de final de vida atravesadas por situaciones independientes de
la enfermedad que amenaza la vida, que toman rol protagónico en la unidad de atención pacientefamilia.
Design, methods and approach: Relato de casos: Situaciones de Abuso Sexual Infantil,
Familia Ensamblada, Indigencia, Desarraigo y Violencia de Género como actores protagónicos
en la escena del Final de la Vida. Se relatan experiencias en las cuales el trabajo interdisciplinario
abarcó situaciones incidentes que amenazaban el tránsito saludable del final de vida.
Results: Se describe el seguimiento y abordaje de 5 casos en los cuales una problemática
ajena a la enfermedad condicionó y en algunos casos determinó el tránsito de la enfermedad.
Todos los casos tuvieron en común problemáticas sociales que obligaron a ampliar la red y
extender los recursos que habitualmente solemos utilizar desde el equipo de cuidados paliativos
pediátricos.
Conclusion/Lessons learned: Acompañar niños, niñas y adolescentes junto a sus familias
en el Final de la Vida es un desafío, que se complejiza ante situaciones traumáticas ajenas a la
enfermedad de base que hacen foco en la escena y dificultan su afrontamiento. Estas situaciones
motivaron al equipo de CPP a preguntarnos sobre nuestros límites, sobre autonomía de los niños
y la necesidad de detectar situaciones, a veces traumáticas, no relacionadas con la enfermedad.
¿Hasta dónde deberían llegar las intervenciones de un equipo de CPP? ¿Cómo actuar cuando un
niño desea algo distinto a los padres o al equipo? ¿Cómo trabajar integralmente en el final de
vida en torno a situaciones ajenas a la enfermedad pero que interfieren en su evolución?
UN RELATO DE EXPERIENCIA: EL GRUPO PADRES DESCONSOLADOS COMO PRECAUCIÓN
PROPUESTO PARA EL LUTO DE LA FAMILIA.
RUBIO, Andreza | SOUZA, Jussara Lima | PERINA, Elisa Maria | CARVALHO, Fabiana Lima |
PETRECA, Priscila de Paula Cardoso | FRESTON, Yolanda Braga | SANCHES, Cristiane Ferreira
Mendes
UNIVERSIDADE ESTADUAL DE CAMPINAS
Background: La muerte de un niño es un fenómeno que se percibe como una naturaleza
opuesta fatalidad y que paran en última instancia con las expectativas y los sueños de una
familia, produciendo un dolor insoportable, lo que puede agravar la elaboración de duelo e
influir en el futuro de la misma . Según Freud, el dolor es un trabajo psíquico, una reacción
natural a las pérdidas reales o imaginarios que necesitan para el reconocimiento social y una
expresión de los sentimientos de espacio para el proceso de preparación para tener éxito. Sin
embargo, lo que se percibe en la realidad se trata de un silencio en torno a la pérdida y el dolor
de los padres que son incapaces de expresar sus sentimientos.
Aims: Comparte el relato de experiencia del grupo de cuidados paliativos CAISM / UNICAMP,
que durante 11 años se desarrolla una acción enfocada a la atención al dolor de los padres, a
través del “grupo de padres dolientes”.
Methods: El grupo de padres en duelo ocurre todos los meses en la institución, con la
participación del equipo de cuidados paliativos (médico, psicólogo, fisioterapeuta, trabajador
social y una enfermera) y los padres que perdieron a sus hijos en la unidad de neonatología.
Results: Se puede observar que el grupo es una oportunidad donde los padres pueden compartir
sus experiencias, expresar sus sentimientos, dudas y fantasías con respecto a la muerte de su
hijo, convirtiéndose en un espacio de intercambio y de identificación entre ellos, ayudándoles
a construcción de significados y representaciones que ayudan a desarrollar la vida y de la
realidad de la pérdida.
Conclusion/Discussion: El trabajo en grupo con los padres en duelo no está desarrollado en
ABSTRACTS 17
Brasil y esta experiencia ha mostrado resultados positivos e integradores que pueden estimular
el desarrollo de las acciones terapéuticas para luchar en las instituciones de salud.
LIMITACIÓN/ ADECUACIÓN DE ESFUERZO TERAPÉUTICO (LET/AET) EN PACIENTES
CON ENFERMEDADES LIMITANTES PARA LA VIDA NO ONCOLÓGICA: ¿QUÉ OPINAN
LOS PROFESIONALES INTENSIVISTAS?
PESERICO, Maria Fernanda | PEROSI GAMBOA, Belen | RODRÍGUEZ ALCÁNTARA, Valeria |
VILLARROEL, Ileana | ALANDA, Carina | RICHARD, Patricia | LÓPEZ, Maria Paz | GIECCO,
Luciana
HOSPITAL MATERNO INFANTIL SAN ROQUE
Background: En las Unidades de Cuidados Intensivos Pediátricos (UCIP) y Neonatal (UCIN)
ingresan pacientes críticos; que presentan enfermedades limitantes para las cuales no existe
expectativa de curación. Se presentan durante el proceso de internación dilemas éticos/morales
al momento de la toma de decisiones. Es necesaria la participación de equipos de salud, comité
de ética y equipo de CP.
Aims: Explorar la opinión de médicos y enfermeros de UCIP y UCIN del HMISR acerca de la
LET/AET en pacientes con enfermedades limitantes para la vida no oncológicos.
Methods: Médicos y Enfermeros de UCIP y UCIN del HMISR. (N: 62).Estudio prospectivo
descriptivo transversal realizado en Octubre 2.015, utilizando cuestionario estructurado autoadministrado, anónimo, voluntario (encuesta validada de 20 preguntas desarrollada por Dra.
Llajas Rojas y modificada por Dra. Peserico).
Results: la tasa de respuesta fue de 60.8 %. La muestra quedó compuesta por 33.9%
de médicos y 66.1% enfermeros, 43.5% representando a UCIP y 56.4 % a UCIN; 82.2%
sexo femenino, 80.6% entre 20 y 40 años y 77.4% católicos y 62.9% menos de 10 años de
antigüedad. El 38.7 % pocas veces o nunca sintió hablar de LET. Para efectuar LET, consideran
la decisión del paciente el 69.3%, familia 77 % y del juez 72.6%. Para decidir tratamiento a
instaurar consideran siempre la edad el 56.4%; calidad de vida pre-UCI 45.1%, post UCI 47%
y futilidad 38.7%. Mayoritariamente el 51.6% acuerda con eutanasia; 96.8% con ortotanasia;
el 8.1% con distanasia. El 75.8% indicaría CP.
Conclusion/Discussion: un considerable porcentaje de profesionales no ha sentido hablar
de LET, no toma en cuenta la opinión del niño / familia y acuerda con eutanasia, pero
mayoritariamente con ortotanasia y CP. Es relevante el grado de acuerdo que manifestaron con
el concepto de distanasia.
LOS CUIDADOS PALIATIVOS COMO DERECHOS HUMANOS. EL ROL DEL SISTEMA
DE SALUD PÚBLICO Y DE LA FAMILIA EN PACIENTES CON PATOLOGÍAS CRÓNICAS
AMENAZANTES DE LA VIDA. PROPUESTA
CIRUZZI, Maria Susana(1) | SELANDARI, Jorge Oscar(1) | AIZENBERG, Marisa Sandra(2) |
KIMAN, Rut(3) | JUNIN, Marta(4) | TRIPODORO, Vilma(5) | NITTO, Maximiliano(2)
HOSPITAL DE PEDIATRÍA DR. JUAN P. GARRAHAN (1); FACULTAD DE DERECHO, UNIVERSIDAD
DE BUENOS AIRES (2); HOSPITAL NACIONAL ALEJANDRO POSADAS (3); HOSPITAL UDAONDO
(4); INSTITUTO LANARI (5)
Aims or goal: Diseñar un marco jurídico basado en la Teoría de los Derecho Humanos que recepte
a los Cuidados Paliativos y garantice el acceso universal, justo y equitativo, acompañamiento
familiar, sostén médico, cuidado integral; con la finalidad de desmedicalizar al paciente, y
empoderarlo aún en su vulnerabilidad.
Design, methods and approach: Estudio transdisciplinario, teórico-empírico con enfoque
sistémico, descriptivo, prospectivo-proyectivo, método cualitativo-cuantitativo basado en la
recolección de datos de las distintas normativas, locales, nacionales e internacionales, que
regulan el derecho de la salud, , fallos jurisprudenciales, que reconocen, garantizan y/o amplían
su ejercicio. Análisis de contenido crítico y discursivo.
Results: Preliminares: 1.- Complejidad como criterio de intervención. 2.- Necesidad de
precisar conceptos: atención paliativa. Evolutiva.Eutanasia y suicidio asistido. 3.- Ausencia
de consideración de los cuidados paliativos como disciplina autónoma. 4.- Falta de cobertura
de los cuidados paliativos por los distintos sistemas de salud. 5.- La familia como cuidador
principal del paciente. 6.- Atención coordinada e integrada. Criterio de intervención flexible.
7.- Prolongación de la atención del equipo de salud al domicilio. Actitud proactiva -preventiva
y gestión de caso.Determinación de la muerte y certificado de defunción. 10.- Reconocimiento
y documentación de los deseos del paciente. 11.- La Dignidad como común denominador. El
Derecho como facilitador .
Conclusion/Lessons learned: Los Derechos Humanos resultan un imperativo moral y un marco
legal adecuado para garantizar los Cuidados Paliativos.Así ha sido expuesto en “Declaration and
Statement of Commitment on Palliative Care and Pain Treatment as Human Rights”, la Carta
de Praga y el Informe del Relator Especial para el Derecho a la Salud, de Naciones Unidas, en
Febrero 2013, entre otros..
ENCUESTA DE OPINIÓN SOBRE LIMITACIÓN DEL ESFUERZO TERAPÉUTICO (LET) EN
UN SERVICIO DE CUIDADOS INTENSIVOS PEDIÁTRICOS DE TUCUMÁN
ALBARRACIN, Maria(1) | CORREA, Graciela E(1) | DI COLA, Estela Haydee(1) | FAGALDE,
Guillermo(2) | GALLARDO,, Patricia(1) | GRAMAJO, Laura Liliana(1) | OLIVIERI, Maria Silvia(1)
| REARTE, As(1)
HOSPITAL DEL NIÑO JESUS TUCUMAN (1); , LL GRAMAJO (2)
Background: En la urgencia en terapia intensiva ante la duda, corresponde actuar en favor de
la vida. Su prolongación con tratamientos inútiles y desproporcionados contradice el principio
de no maleficencia.. El bienestar y cuidado de esos niños es limitar el esfuerzo terapéutico
Aims: Conocer que piensan o saben sobre LET el personal de la terapia intensiva (UCIP)
Methods: Población : personal de UCIP del Hospital del Niño Jesús de Tucumán, por una
encuesta de opinión . Análisis descriptivo de las variables y de asociación mediante test exacto
de Fisher y test chi cuadrado.
Results: Respondieron la encuesta, 15 médicos, 14 enfermeros y 1 auxiliar, El 100% conocen
que es LET. El 77% respondió estar a favor de LET, el 64% no considera sentirse preparado para
realizarlo. El 87% opino que en la decisión es importante la opinión de los padres. El 100% del
personal de UCIP opinó que en algún momento se realiza encarnizamiento terapéutico. El 9%
de los que tienen < de 5 años de antigüedad, el 40% de los que tienen entre 5-10 años, el 50%
de los que tienen entre 10-15, y el 100% con más de 15 años de antiguedad están preparados
para LET, siendo estas proporciones significativamente diferentes(p=0,047).. Para 9 de los 15
médicos no es lo mismo retirar que no iniciar un soporte vital y el 74% es decir 11 considera la
opinión de los padres. En el 50% de los casos, la manera en la cual realizan algún tipo de LET
los médicos de la UCIP es la de disminuir gradualmente las medidas esperando el PCR o indicar
solo una parte del soporte vital. .
Conclusion/Discussion: Un alto porcentaje de encuestados conocen el concepto LET pero
,no se consideran preparados para realizarlo, llegando en algún momento al ensañamiento
terapéutico. Al igual que en otros trabajos la mayor edad y antiguedad laboral se asocia a
mayores prácticas de medidas para no prolongar la vida inútilmente. A pesar que desde la ética
no iniciar que retirar un soporte vital es lo mismo, para gran parte del equipo médico no es así,
evidenciando un concepto poco claro de LET
THE INFLUENCE OF FAMILY AND CARE ON PROLONGED GRIEF AMONG CANCERBEREAVED SIBLINGS 2-9 YEARS POST-LOSS
LÖVGREN, Malin(1) | SVEEN, Josefin(2) | NYBERG, Tommy(1) | EILEGÅRD WALLIN, Alexandra(3)
ABSTRACTS 19
| PRIGERSON, Holly(4) | STEINECK, Gunnar(1) | KREICBERGS, Ulrika(2)
KAROLINSKA INSTITUTE (1); ERSTA SKÖNDAL UNIVERSITY COLLEGE (2); DALARNA
UNIVERSITY (3); WEILL CORNELL MEDICAL COLLEGE (4)
Background: After the death of a sibling from cancer, grief persists in the majority of bereaved
survivors. Identifying factors to be modified or avoided during illness and into bereavement
that aide in the resolution of grief may promote adjustment of bereaved siblings.
Aims: The aim was to explore modifiable or avoidable family and care-related factors that
could influence prolonged grief among siblings 2-9 years after bereavement.
Methods: Data were derived from a nationwide Swedish survey of individuals who lost a
brother/sister to childhood cancer during 2000-2007 (N=174, participation-rate 73%). The
survey assessed prolonged grief, family-and care related factors. Logistic regression analyses
modeled the effects of family and care-related factors on the likelihood of prolonged grief (yes
or no) 2-9 years post-loss.
Results: The following factors predicted prolonged grief at follow-up: the siblings’ perception
that it was not a peaceful death (OR: 9.86, 95% CI: 2.39-40.65), limited information given to
siblings the last month of life (OR: 5.96, 95% CI: 1.87-13.68), information about the impending
death the last 24 hours before it occurred (OR: 2.73, 95% CI: 1.02-7.33), siblings’ avoidance of
the doctors (OR: 3.22, 95% CI: 0.75-13.76), the lack of communication with family (OR: 2.86,
95% CI: 1.01-8.04) and people outside the family (OR: 5.07, 95% CI: 1.64-15.70) about the
death. Symptoms of depression (OR: 1.27; 95% CI: 1.12-1.45) and that there was 2-7 years
since loss (2-4 years: OR: 10.36, 95% CI: 2.87-37.48 and 5-7 years: OR: 8.36, 95% CI: 2.3629.57) also influence the likelihood of prolonged grief. Together, these factors explained 54%
of the variance of prolonged grief.
Conclusion/Discussion: A peaceful death, adequate information, and increased communication
with family, friends and health care can decrease the risk for prolonged grief among siblings of
cancer patients who die.
SIBLINGS - THE FORGOTTEN MOURNERS: NEW BEGINNINGS AND REBUILDING,
HELPING CHILDREN TO FIND A NEW NORMAL
HARTNETT, Michelle
LAURALYNN IRELAND’S CHILDRENS HOSPICE
Background: The death of a sibling can result in the loss of a child’s playmate, role model, and
friend. Despite the profundity of sibling death, there is insufficient research addressing coping
mechanisms adopted by children to find a ‘new normal’ without their sibling.
Aims: To address the support needs of bereaved children; both in the death of their sibling and
helping them adjust to new beginnings and the rebuilding of their life without their sibling
Methods: A nine-month play therapy pilot service for nine bereaved siblings was conducted.
Weekly sessions were forty minutes in duration. Referrals were received from parents. Sessions
used blended techniques from both directive and non-directive therapeutic play. The aim of
sessions was to create opportunities for reconnecting to positive experiences and acknowledging
the loss siblings had suffered in a controlled space. Strengths & Difficulties Questionnaires
(SDQ’s) were completed by teachers, parents and attending children on commencement and
completion of the programme and at the ten week mark. Data was collated & analysed. Service
evaluation questionnaires were also issued to parents and children.
Results: SDQ outcomes demonstrated improved scores across pro-social engagement,
emotional and behavioural categories. Four children acknowledged that the sessions gave them
space to think about their sibling and ask questions that they could/did not at home. Four
parents commented that they welcomed accessing bereavement support for the sibling at the
hospice their child had attended, thus facilitating continuing bonds between the family and the
deceased child.
Conclusion/Discussion: Bereavement support through a mixed method of play therapy can
provide a role in supporting positive resilience helping bereaved siblings to develop the capacity
to re-construct their mechanisms of coping with adversities and to foster new beginnings. Further
research validating these preliminary findings will support development of this programme,
ensuring bereavement support services are enhanced going forward.
A COMPREHENSIVE GRIEF SUPPORT PROGRAM AT A LARGE CANADIAN CHILDREN’S
HOSPITAL: A 5 YEAR RETROSPECTIVE DESCRIPTIVE REVIEW.
ROBERTSON, Marli(1) | MILLER, Megan(2) | AGOPSOWICZ, Michelle(3)
UNIVERSITY OF CALGARY (1); ALBERTA CHILDREN’S HOSPITAL (2); MT. ROYAL UNIVERSITY (3)
Aims or goal: The acknowledgement by health care professionals of the complexity of the
parental grief experience as well as the role they have in the provision of support for bereaved
families has resulted in Bereavement follow-up programs increasingly being offered by pediatric
health centres. At Alberta Children’s Hospital the Grief Support Program has operated for more
than 25 years, with a focus on providing grief support to families following the death of a child,
regardless of the cause, circumstances or location of the death. This program is part of an
integrated specialized pediatric palliative care program, the Children’s Hospice and Palliative
Care Services, (CHaPS). A 5 year retrospective, descriptive review was performed as part of
ongoing quality assessment to inform program development.
Design, methods and approach: Data was extracted from the Grief Support database by two
of the authors, and cross-checked with hospital statistics when relevant. Descriptive statistics
were derived using SPSS software by an independent biostatistician.
Results: There were a total of 389 childhood deaths; cancer was the cause of death for 18 %
of children while other chronic conditions accounted for 50 % of the deaths. The other deaths
were the result of a sudden medical event (16 %) or external causes (16 %). 80 % of all
families were provided with a variety of grief support services after the death of their child by
the palliative care program while the remainder (20%) received bereavement support through
the Oncology service.
Conclusion/Lessons learned: A comprehensive grief support service, integrated with other
specialized palliative care services, was able to offer a variety of grief support modalities to all
parents who experienced the death of a child who was, (or at any time had been) seen at the
Alberta Children’s Hospital.
“THE COMPASSIONATE MIND IS THE MIND THAT TRANSFORMS” – WHAT WE CAN
LEARN FROM PAUL GILBERT IN THE PRACTICE OF PAEDIATRIC PALLIATIVE CARE
DUC, Jacqueline
LADY CILENTO CHILDREN’S HOSPITAL, AUSTRALIA
Aims or goal: The International Charter for Human Values in Healthcare asserts that compassion,
respect for persons, commitment to integrity and ethical practice, commitment to excellence
and justice in healthcare are “fundamental to the practice of compassionate, ethical and safe
healthcare.”
Design, methods and approach: Paul Gilbert, the founder of compassion-focused therapy
and compassionate mind training defines compassion as “a basic kindness, with deep awareness
of the suffering of oneself and of other living beings, coupled with a wish and effort to relieve
it.” Indeed, compassion is a concept integral to the practice of paediatric palliative care –
fundamental to the work that clinicians undertake in caring for children with life-limiting illnesses
and their families.
Results: Just as the field of paediatric palliative care has begun to formally define and establish
itself alongside its counterparts in the last few decades, the dimensions of compassion-focused
therapy, mindful self-compassion and compassion cultivation training have only been recently
created, becoming more widely-appreciated by those working in the fields of psychology and
neuroscience research in the first instance. One of Gilbert’s central theories is that compassion
ABSTRACTS 21
has evolved from “the caregiver mentality” seen in human parental care and child rearing.
Therein lies the immediacy and innate relevance of Gilbert’s principles of compassion-based
theory to the practice of paediatric palliative care.
Conclusion/Lessons learned: The time has come to better understand how the powerfully
healing techniques of mindfulness and self-compassion may benefit children with a life-limiting
illness, alongside their parents, caregivers and families. Moreover, as concepts like ‘compassion
fatigue’, burnout and moral distress become increasingly discussed in the literature (and the
impact these challenges have on the mental/emotional wellbeing and quality of life of healthcare
professionals becomes increasingly acknowledged), we must learn how to practically incorporate
and extend these practices to the toolbox of clinicians working at the frontline of paediatric
palliative care.
STRESS FREQUENCY AND DIFFICULTY AS MEASURED BY THE PEDIATRIC INVENTORY
FOR PARENTS (PIP): PARENTS OF MEDICALLY FRAGILE INFANTS COMPARED TO
PARENTS OF CHILDREN WITH CANCER AND OTHER CHRONIC CONDITIONS
POSTIER, Andrea(1) | HAMRE, Karen(1) | REMKE, Stacy(2) | OSENGA, Kaci(1) | BREARLEY,
Sarah G(3) | GRINYER, Anne(3) | GOERTZEN, Lexie(1) | FRIEDRICHSDORF, Stefan J(1)
CHILDREN’S HOSPITALS AND CLINICS OF MINNESOTA (1); SCHOOL OF SOCIAL WORK,
UNIVERSITY OF MINNESOTA (2); INTERNATIONAL OBSERVATORY ON END OF LIFE CARE,
LANCASTER UNIVERSITY, UK (3)
Background: Parents caring for medically fragile infants at home face increased stress, though
little is known about how this experience compares with parents caring for children with other
medical conditions at home.
Aims: To compare stress in parents of medically fragile infants with stress in parents of children
with cancer and other chronic conditions.
Methods: Parents completed the Pediatric Inventory for Parents (PIP), rating the frequency
(PIP-F) and difficulty (PIP-D) of 42 stressful events associated with caring for their medically
fragile child. Student’s t-tests were conducted to compare mean total PIP scores of parents of
medically fragile infants to parents of children with diagnoses of cancer, inflammatory bowel
disease (IBD), diabetes, obesity, sickle cell disease (SCD), and bladder exstrophy. Cohen’s d
was calculated to estimate the standardized mean effect of the difference between samples.
Results: Pediatric Inventory for Parents scores among parents of medically fragile infants
were higher than previously published scores among parents of children with other medical
conditions. Mean PIP-F scores for parents of medically fragile infants were significantly higher
than all the other conditions except SCD. Mean PIP-D scores were statistically significantly
higher compared to other sample groups except cancer and bladder exstrophy. Large effects
were identified between both PIP-F and PIP-D scores for parents of medically fragile infants and
parents of children with IBD and diabetes (Cohen’s d > 0.8).
Conclusion/Discussion: Parents of medically fragile infants experienced stress more
frequently than parents of children with cancer and other chronic conditions, though difficulty
associated with stressors was higher in parents of children with cancer and bladder exstrophy
. Parents of medically fragile infants may benefit from early introduction to palliative care in
order to provide the best psychosocial support for the family.
FRIDAY 20 MAY 11.00-12.30
VIERNES 20 DE MAYO 11:00 - 12:30
SPIRITUAL CARE FOR ADOLESCENTS LIVING WITH HIV IN ZIMBABWE
BOSHA, Mildred Ndamukaneyi
Aims or goal: To help the young person to come to terms with their HIV status, come up with
coping mechanisms, find a sense of peace despite the suffering, and on the whole, improve
quality of life.
Design, methods and approach: Provision of medication and counseling for the young people.
Sexual and reproductive health workshops. Workshops for young carers. Capacity building of
caregivers and service providers. Referrals.
Results: Supportive environment to openly share feelings and express beliefs. Reduction of
isolation . Explore own beliefs and illness. Opportunity to accept and consciously prepare for
future. Access to services. Restoration of normal living and direction to future life. Psycho social
well being.
Conclusion/Lessons learned: Adolescents living with HIV; like other young people have
a right to holistic care, which addresses their needs including spiritual pain. Through holistic
support, the young person may find meaning of their life as well as spiritual and religious
answers to overcome their suffering.
A PROGRAM THAT IDENTIFIES AND MEETS AN UNMET NEED IN PHYSICAL, EMOTIONAL
AND SPIRITUAL HEALTH OF PARENTS OF PALLIATIVE CHILDREN
BARTOLINI, Sue
BEAR COTTAGE
Background: A unique program developed to target the mind, body and spiritual health of
mothers at our hospice whose needs were not realised, even by themselves nor acted upon.
Aims: With support, guidance and education to empower the mothers to learn how to care for
themselves, to make positive healthy changes in their life and to enable rejuvenation within
themselves.
Methods: When considering family centered care Bootcamp@bearCottage was designed to
improve the health and well being of the whole family by providing a holistic wellness program
for identified bereaved and non bereaved mums. Hearing comments like “I didn’t always look
like this” and seeing poor health taking many forms including diabetes, depression, high blood
pressure & weight gain was the catalyst. Additionally the knowledge that in helping Mums, often
the heart and soul of the family unit, there would be a flow-on of positive effects to all family
members. The 6 month program, in association with nutrition, diet and exercise specialists
and other volunteer community experts in the fields of exercise and emotional well being was
developed. . The focus was establishing personal goals, nutrition advice, exercise, yoga, mental
health and wellness.
Results: Happier healthier mums with happier healthier families. Staff Feedback “After the
yoga classes the mum’s expressed how it helped them to reconnect with their body and that
nurturing themselves helps them to nurture those around them”
Conclusion/Discussion: Initiate a research process to evaluate the effectiveness of the program.
MEDICAL ETHICS IN PALLIATIVE CARE FOR CHILDREN
MUGARISANWA, Yanano Prudence
ABSTRACTS 23
Aims or goal: Palliative care has been practiced in Africa since 1979, using the home based
care model where patients (including children) are cared for by family care givers with the
support of the palliative care team and so this study aims to provide insights on medical ethics
in palliative care provision through a Zimbabwean perspective from the 1st Hospice in Africa
(Island Hospice &Healthcare) based on the experiences of professionals and community based
caregivers (CHBCs).
Design, methods and approach: The devastating consequences of the HIV and AIDS epidemic
and the limited awareness of children’s rights, make most children vulnerable. In Zimbabwe,
hospice palliative care is mainly provided through outreach clinics, home visits, telephone
sessions, hospital visits, psycho social support sessions, training and capacity building. Advocacy
meetings and stakeholder symposiums are done regularly with key stakeholders at community
and national level with support from government representatives. The provision of palliative
care for children involves collaboration between the child, family or guardian, school staff,
caregivers and health care professionals to deal with their unique issues ethically.
Results: Key gatherings from palliative care documentation in Zimbabwe in medical ethics
relate to features and issues concerning patients, family and caregivers as well as ethical
dilemmas. Good palliative care includes pain management, education, respect for patient (plus
family) and psycho social support. Palliative care provision should not harm the patient’s health
and principles of “non-maleficence “beneficence” and justice should be considered.
Conclusion/Lessons learned: Opportunities to share experiences and perspectives around
medical ethics in discussions help caregivers to learn and better understand difficult and
unresolved issues of children and find appropriate ways of managing them.
EXPERIENCES IN APPLYING NON PHARMACOLOGICAL TECHNIQUES IN PAEDIATRIC
PALLIATIVE CARE
STEED, Sonia Maria
HOSPITAL DE NIÑOS DR. R. GUTIÉRREZ
Aims or goal: To demonstrate the benefits of Non Pharmacological Techniques (NPT) for
alleviating pain and other physical symptoms, be they physical, mental, emotional or spiritual
in children and adolescents suffering from Life threatening illnesses
Design, methods and approach: A retrospective study involving 3537 sessions, of NPT
during 11 years, by volunteers specialized in a variety of alternative healing systems, within
the framework of a Paediatric Palliative Care unit in a children´s hospital in Buenos Aires A
variety of relaxation and healing practices were implemented taking into account the following
items • Diagnosis and Clinical state • Stage and Prognosis of the illness • Age • Intensity of the
Symptom, valued by the use of Scales, observation Radionics, Medical and Family assessment
• State of Awareness. Selection of Practices according to previous variables • Tibetan Bowls
and Crystal Singing Bowls • Hands on Healing • Creative visualization • Breathing techniques
• Radionics • Transcultural Shamanism • Transcendental Meditation and others • Metamorphic
massage and reflexology
Results: High level of evidence of symptom control, confirmed by the use of scales, Observation,
and Radionics Almost immediate beneficial effect of the practices, frequently between 10 to 15
minutes Very low cost. High adherence to the treatment High incidence amongst adolescents
to choose certain relaxation techniques.
Conclusion/Lessons learned: The Application of non-Pharmacological techniques produces
significant benefits In the Control of Symptoms The fact that it is so easy to administrate and is
so cost effective makes it ´s inclusion in A PPC UNIT highly recommendable. NPT also favours
the Autonomy in children as evidenced by their adopting relaxation techniques to practice on
their own, especially when going confronting a Difficult situation. The quality of attention of
these techniques lies directly in proportion with the quantity of trained volunteers in the team.
The Application of non-Pharmacological techniques produces significant benefits In the Control
of Symptoms The fact that it is so easy to administrate and is so cost effective makes it´s
inclusion in A PPC UNIT highly recommendable. NPT also favours the Autonomy in children as
evidenced by their adopting relaxation techniques to practice on their own, especially when
going confronting a Difficult situation. The quality of attention of these techniques lies directly
in proportion with the quantity of trained volunteers in the team.
COMPLICATIONS OF NEUROGENIC BLADDER IN CHILDREN WITH SEVERE
NEUROLOGICAL IMPAIRMENT
BIRTAR, Delia
HOSPICE CASA SPERANTEI BRASOV, ROMANIA
Background: The neurogenic bladder is common in children with severe neurological
impairment. At birth, the majority of patients with neurogenic bladder has normal upper urinary
tracts. Without proper management, urinary tract infections and elevated bladder pressures
may cause upper urinary tract deterioration and renal failure.
Aims: The present study aims to analyse the frequency of urinary complication in children with
neurogenic bladder and the barriers to treatment adherence.
Methods: A retrospective chart review of all 58 patients with complex neurological diseases
from the Hospice Casa Sperantei was performed. We searched the medical history, physical
examination, urinalysis, culture and renal ultrasound. The patients were followed closely at 2
to 4 month intervals with serial physical examination, upper tract imaging and urine culture.
Results: We included 58 patients: 35 (60,3%) with cerebral palsy (CP), 8 with spina bifida
(SB), 8 with DMD, 4 with SMA and 2 with hydrocephalus. 16 children presented recurrent UTIs:
10 in the CP group (28.6%), 5 in the SB group (62.5%) 1 child with spinal injury. In 4 children
renal deterioration was diagnosed : 2 in SB group, 1 with CP, 1 with spinal injury. 2 children
with delayed initiation of CIC developed chronic renal failure. The compliance to the treatment
was influenced by antibioticophobia, misconception about CIC, embarrassment and stigma,
lack of availability of appropriate catheters, inadequate facilities in public toilets, lack of proper
training, exhaustion of parents.
Conclusion/Discussion: It is well known that early interventions are crucial for improving
quality of life and life expectancy in children with neural tube defects. They need close followup all life-long. Also, children with CP need to be investigated for urinary disfunction and the
high incidence (more than one quarter) of recurrent UTIs in our study, suggests they need to be
screened for UTI as well. There is no consensus in terms of protocols for preventing, diagnosing
and treating urinary complications in children with NB, but an interdisciplinary protocol needs
to be known and implemented.
FAMILIA Y DISCAPACIDAD: LA PATOLOGIZACIÓN DEL VÍNCULO
CORSO, Silvana Mabel(1) | SAP, Agustín Rufino(2)
E.E.M.N°2 D.E.17 (1); C.E.I.A.C. (2)
Aims or goal: Intentaremos transmitir todo aquello que aprendimos de nuestra hija Catalina,
una niña con parálisis cerebral severa. Nos referiremos a la patologización del vínculo y la
frontera entre lo terapéuticamente saludable y lo contraindicado.
Design, methods and approach: Se trata de nuestra mirada como familia respecto de los
cuidados y tratamientos que recibió nuestra hija desde el momento de su nacimiento. Y cómo
impacta en el vínculo padres e hija. El análisis surge de la intención de responder a preguntas
tales como: o ¿Qué hacer para ser lo “suficiente bueno” como padres? o ¿Qué hay de los sucesos
que trae la sonrisa social si los potenciales evocados afirmaban que no veía y ni escuchaba?
o ¿Cómo trabajar con lo sensorio motor? o ¿Cómo hacer eficaz la cognición para alimentarse,
para sentarse, para sostener un sonajero?
Results: A través de lo que observamos y vivimos a lo largo de su corta vida (falleció a los 9
ABSTRACTS 25
años), fuimos dando respuestas a estas y otras preguntas que nos llevaron a analizar cómo
estas intervenciones impactan en el vínculo padres e hija.
Conclusion/Lessons learned: Nos obsesionamos con diversas terapias, en la búsqueda de
una cura o de la mayor recuperación, pero no habíamos internalizado que teníamos una hija
discapacitada y que esa era su condición. El punto de estos cuestionamientos, nos lleva a la
conclusión que, el riesgo del desequilibrio de trabajar con disciplinas tan diversas al mismo
tiempo, nos devolvían un “cuerpo fragmentado” donde la atención suele focalizarse no solo
en la patología, sino que también, muchos profesionales lo hacían desde la deficiencia. En
síntesis, la incertidumbre que generó la expectativa de su vida en nosotros y también en los
profesionales, nos fue corriendo de nuestro lugar natural, ser papás. Y esta es la línea que
separa lo terapéuticamente saludable y lo contraindicado.
ESTABLECIENDO PUENTES ENTRE RECAUDADORES Y EQUIPOS DE PALIATIVOS
BUSTAMANTE, Linda(1) | DR., S. Rivas(1) | GLORIA, De Dios(2) | MINI, Jorge(3)
UNIDAD NACIONAL DE ONCOLOGIA PEDIATRICA (1); FUNDACIÓN AYUDAME A VIVIR (2);
FUNDACIÓN ESTUARDO MINI (3)
Background: Todo proyecto de atención de salud necesita ser sostenible para que este pueda
trascender. El sistema de salud gubernamental de algunos países como Guatemala es de recursos
limitados los cuales deben ser racionalizados en su uso y en muchas ocasiones parcializado
por políticas externas que benefician a ciertos proyectos. El involucro de la iniciativa privada
y de fundaciones que realicen recaudación ayuda a que estos proyectos sean sostenibles y
permanezcan en el tiempo. La Unidad Nacional de Oncología Pediatrica en Guatemala trabaja
junto con la Fundación Ayúdame A Vivir la cual durante más de 15 años ha realizado la tarea
de recaudación para que este proyecto continué. Actualmente es una de las fundaciones con
mas éxito en cuanto a recaudación económica pero también con estandares de alta calidad que
garantizan el uso transparente de los fondos. Hace 6 meses tomaron el proyecto del hospicio
“Hogar Estuardo Mini” haciéndolo crecer y manteniendo los mismos estandares utilizados que
en la Unidad. El realizar los puentes de relación entre los prestadores de servicios de salud y los
recaudadores ha demostrado que fortalece el crecimiento pero por sobre todo la permanencia
de los proyectos.
Aims: Describir la intervención de una fundación recaudadora con un hospicio pediatrico
Methods: observacional y descriptivo
Results: Se logro establecer canales de comunicación y el compromiso con el proyecto de un
Hospicio para la atención de pacientes paliativos oncologicos por parte de fundación Ayudame
a Vivir, Fundación Estuardo Mini y la Unidad Nacional de Oncologia Pediatrica.
Conclusion/Discussion: Los proyectos paliativos necesitan no solo ser buenos y de alta calidad
en su atención, también se necesita que el ente recaudadora se involucre en el proyecto
considerándose parte de el.
EXPERIENCIAS DE PROFESIONALES Y FAMILIAS CUYOS HIJOS FALLECIERON EN
DOMICILIO. FACTORES QUE PREDISPONEN A QUE EL LUGAR DE FALLECIMIENTO SEA
EL DOMICILIO
CIPRÉS ROIG, Silvia(1) | PALOMARES DELGADO, Marta(1) | PÉREZ DOMINGUEZ, Almudena(1)
|NAVARRO VILARRUBI, Sergi(1) | PORRAS CANTARERO, Jose Antonio(1) | FERNÁNDEZ MORELL,
Ester(1) | VÉLEZ DELGADO, Veronica(1) | ROLLÁN SERRANO, Eva María(1) | GUTIERRREZ
RADA, Cristina(2) | ESCOBAR RAMIREZ, Maria Del Rocío(1)
HOSPITAL SANT JOAN DE DÉU (1); HOSPITAL SANT JOAN DE DÉU (2)
Aims: Analizar los factores que se relacionan con el lugar de fallecimiento de los pacientes de
la UCPP, domicilio u hospital. Conocer las experiencias de familias y profesionales en relación a
los factores analizados previamente.
Methods: Estudio descriptivo, observacional, retrospectivo y longitudinal sobre una muestra
de 198 pacientes que han participado en el programa de CCPP entre los años 2010 y 2015.
Segunda fase: estudio cualitativo llevado a cabo a través de entrevistas/cuestionarios sobre las
experiencias de 10 familias y 10 profesionales.
Results: El 48,5% de los pacientes eran de sexo femenino, la mediana de edad fue 79 meses.
La mediana de tiempo dentro de CCPP hasta el fallecimiento fue 80 días. El 41,9% de los
pacientes fallecieron en su domicilio. Las especialidades médicas que derivaron a los pacientes
de forma más frecuente fueron oncología (50%) y neurología (28,3%). El número de consultas
hospitalarias, domiciliarias, telefónicas y el tiempo de permanencia en el programa de CCPP
era diferente entre ambos grupos, con un nivel de significancia <0,001. La media de consultas
en hospital era mayor en los niños que fallecieron en el hospital, mientras que el número de
visitas en domicilio y telefónicas fue mayor en los niños fallecidos en domicilio. El tiempo de
permanencia en el programa era mayor en los niños que fallecieron en su domicilio.
Conclusion/Discussion: Los resultados parecen indicar que el tiempo de permanencia en
UCPP se asocia con el fallecimiento en domicilio, igual que el número de consultas domiciliarias
y telefónicas. Y así, las familias aumentan su confianza en el equipo y su nivel de autonomía y
competencia, llegando a que asuman el fallecimiento del niño en el domicilio. (Resultados de la
fase cualitativa incompletos; cuestionarios pendientes).
ENCUESTA SOBRE CUIDADOS PALIATIVOS EN UN HOSPITAL DE NIÑOS DE LA CIUDAD
DE SANTA FE
GAMBA, Natalia Veronica | NAVARRO, Lucas David | GALLIARI, Diego Eduardo
HOSPITAL DE NIÑOS DR O ALASSIA
Aims or goal: Describir el conocimiento de los profesionales de un hospital de niños sobre la
existencia y la puesta en practica de los cuidados paliativos pediatricos (CPP).
Design, methods and approach: Encuesta anonima de 20 preguntas a medicos del Hospital
de niños “Dr. Orlando Alassia” (HNOA) de Santa Fe, Argentina. En setiembre y octubre de 2015.
Se registro datos filiatorios y conocimientos sobre CPP. Se evaluo niños pasibles de cuidados
paliativos en la institución.
Results: De 104 pacientes internados, 30 % eran pasibles de cuidados paliativos. Fueron
contestadas 78 encuestas. Del total, el 94 % fueron pediatras. El 53 % llevaba mas de 10 años
de profesión. El 60% tuvo 1 o mas pacientes fallecidos en los ultimos 5 años. De estos, 57%
refieron haber tenido muertes esperadas. El 70 % refiere haber sido responsable de la atención
en la etapa final. Al preguntar si atenderia al paciente en fase final de la vida, un 89% contesto
que si. El 91% refirio que los niños deberian morir en su hogar, el 8% que dependeria de la
preparacion familiar. El 11 % dijo no estar preparado para afrontar y ayudar a los pacientes en
el final de la vida. En nuestra ciudad no existe un servicio de CPP, el 19% de los profesionales
cree que si. El 46% respondio correctamente la definicion de CPP. Sobre control farmacologico
se registro: dosis máxima de morfina 61% correcto, sobre rotacion de via de administración,
37% correcto, sobre efecto adverso de opioide, 63% correcto y sobre farmaco adyuvante, 51%
correcto.
Conclusion/Lessons learned: Con los datos se demuestra que el conocimiento y la práctica
de los CPP en el HNOA son insuficientes. Se evidencia la prediposicón y la necesidad para
aprender e implicarse en los cuidados del final de la vida de los niños y de sus familias.
EXPERIENCIA EN UNA UNIDAD DE DUIDADOS PROGRESIVOS EN ARGENTINA
URRESTARAZU, Paula | REGUEIRO, Gabriela | URMAN, Jorge | GROSMAN, Arnoldo
HOSPITAL ESPAÑOL DE BUENOS AIRES
Background: La creciente ocupación de las Unidades de Cuidados Intensivos Pediátricos por
ABSTRACTS 27
niños con condiciones limitantes para la vida, ha impulsado el desarrollo de nuevas estrategias
de atención que faciliten la inclusión de los niños en el hogar.
Aims: Describir las características de la población y los resultados de la experiencia de una
Unidad de Cuidados Progresivos en Argentina.
Methods: Estudio prospectivo no aleatorizado cuantitativo. Se analizaron las características de
todos los niños que ingresaron entre el 01/06/07 y el 01/06/15.
Results: Durante el período estudiado se registraron 136 ingresos. La mediana de edad fue de
25 meses. La distribución por sexo fue 58% masculino y 42% femenino. El 31%de los niños
ingresó por derivación desde otra institución o desde su domicilio y el 69% restante, provino
del mismo servicio de pediatría. El 75% (n=102) de las familias habitaba a más de 100 km del
centro de atención. El 44% (n=60) de los diagnósticos correspondió a encefalopatías crónicas
no progresivas, seguido por el 30% (n=41) que correspondió a deficiencias congénitas. El 64%
(n=87) de los niños se encontraba en asistencia respiratoria mecánica prolongada y el 82%
(n=112) estaba traqueostomizado al ingreso. El 45% (n= 61) de los niños se alimentaba al
ingreso por sonda nasogástrica y el 51 % (n=69), lo hacía por gastrostomía. El 67.5% de las
familias vivían en situación de indigencia. El tiempo promedio de permanencia fue de 89 días.
El 17% (n=23) de los niños logró el destete definitivo de la asistencia respiratoria mecánica
en el plazo de la internación. Egresaron 123 niños en el plazo estudiado, el 75% (n=102) con
cuidados domiciliarios.
Conclusion/Discussion: La mayoría de las familias de los niños que ingresaron habitaba lejos
del centro. Los diagnósticos más frecuentes fueron encefalopatías crónicas no progresivas y
deficiencias congénitas. La necesidad de una traqueostomía y asistencia respiratoria mecánica
prolongada fueron las principales causa de complejidad. La situación social familiar ha resultado
ser la principal barrera para la inclusión en el hogar.
DEVELOPMENT AND VALIDATION OF THE APCA AFRICAN CHILDREN’S PALLIATIVE
OUTCOME SCALE (C-POS)
DOWNING, Julia(1) | ATIENO, M(2) | NAMISANGO, E(2) | POWELL, R A(2) | ALI, Z(3) | MARSTON,
J(1) | MEIRING, Michelle(4) | HARDING, R(5)
ICPCN (1); AFRICAN PALLIATIVE CARE ASSOCIATION (2); KENYAN HOSPICE AND PALLIATIVE
CARE ASSOCIATION (3); RED CROSS CHILDREN’S HOSPITAL (4); CICELY SAUNDERS INSTITUTE,
KING’S COLLEGE LONDON (5)
Background: Assessing the outcomes of palliative care in children has been hampered by the
lack of outcome measures. Thus an outcome tool was developed for use in children for clinical
practice, audit and research.
Aims: To develop and validate the APCA African Children ́s POS in sub-Saharan Africa, utilising
a collaborative approach.
Methods: A literature review was conducted & the tool developed in 3 phases: (1) development
and piloting of an initial tool in 4 sites across 3 countries (Kenya, Ug and SA) utilising both
quantitative and qualitative data collection. (2) Revision of tool and assessment of its utility,
including acceptability in practice, feasibility and face validity. 198 children recruited across Ug,
Kenya, SA and Zimbabwe. Qualitative interviews were also held. (3) Revision & validation of the
C-POS, establishing face, content & construct validity, reliability and acceptability. 302 children
recruited (Ug, Kenya & SA) and 61 in-depth and cognitive interviews conducted. The tool was
finalised in September 2014.
Results: The C-POS is a multi-dimensional outcome tool with 14 questions, 9 aimed at the
child (completed by child or proxy) and 5 at their carer. In the final validation phase, mean age
for child respondents was 12 (SD= 4.9). Cronbach’s alpha was 0.38 (child) and 0.56 (proxy)
indicating expected moderate internal consistency. For construct validity (C-POS-PedQL)
Kendall ́s coefficient of concordance were low-moderate as expected (0.41-0.51). Good testretest reliability was seen with high correlation Kendall ́s coefficient for all items (0.67-0.88).
Median time to complete at final visit was 5 mins (child), 10 mins (proxy) and 13 mins (child
& proxy). Responsiveness to change was seen and interviews showed POS items mapped well
onto identified needs with good interpretation (n=61).
Conclusion/Discussion: The APCA African C-POS is a valid and reliable tool & its development
is an important step forward in the measurement of outcomes in children ́s palliative care.
CHILDREN UNDERGOING HEMATOPOIETIC STEM CELL TRANSPLANTATION (HSCT)
ARE MORE LIKELY TO DIE IN HOSPITAL AND PICU WITH SHORTER TIME TO END OF
LIFE CARE (ELC) THAN THOSE DYING AT HOME
BALL, Lynne Margaret(1) | NEUMAN-VAN EIJK, Antonia G.M.(1) | MELENKAMP, Hilda(1) | VAN
WALRAVEN, Anne-marie S.M.(2)
WILLEM ALEXANDER CHILDREN’S HOSPITAL, LUMC, LEIDEN, THE NETHERLANDS (1);
STICHTING PAL, UTRECHT AND WILLEM ALEXANDER CHILDREN’S HOSPITAL LUMC, LEIDEN,
THE NETHERLANDS (2)
Background: Transplant related mortality (TRM) and malignancy relapse results in pediatric
HSCT centres providing ELC. Anticipation of cure may lead to unrealistic expectations and
impede timely provision of ELC.
Aims: We undertook a retrospective analysis of place of death, timing and communication
around ELC provision in our unit.
Methods: Children who died after HSCT in our unit between January 2011 and December 2015
were included. Unit data base and clinical case notes were used to obtain epidemiological data,
clinical details, place and cause of death. Time from medical discussion with parents/child about
“no possibility of cure” and time to death was documented
Results: A total of 55 from 245 transplanted children (23%) died, 37 boys and 18 girls median
age 6y10m (range 0,5-17y). Deaths varied per year: avg. admission/yr n= 34 (range 20-44)
avg. deaths 10/yr (range 2-17).In 33 children with malignant disease, cause of death was
relapse in 9 (27%) and TRM in 24 (73%). Thirteen (39%) died at home, 18% (n=6) in HSCT
unit and 43% (n=14) in PICU. In children with non-malignant disease (n=22), 2 died from
progressive disease (9%), with TRM accounting for the remainder. Only 1 patient died at home
with 55% (n=12) dying in PICU, with remaining 9 (41%) dying in hospital. For children dying
at home ELC discussion was initiated at mean of 1mo before death (range 3dy-3mo). Children
were admitted to PICU median of 14 days before death (range 1-49) with ELC discussion
initiated at mean 18 hours before death (range <1 – 120).
Conclusion/Discussion: In children undergoing HSCT, deaths are mainly hospital/PICU
based. Children with relapsed malignancies are more likely to die at home, with ELC discussion
introduced weeks before death, contrasting to PICU where initiated hours or rarely days before
death. This study shows ELC in pediatric HSCT needs to be improved with advanced planning
especially for admissions to PICU.
TO ASSESS THE CHANGES IN QUALITY OF LIFE OF CHILDREN WHO WERE
PROVIDED PALLIATIVE CARE THROUGH CHILDREN’S PALLIATIVE CARE PROJECT IN
MAHARASHTRA
MUCKADEN, M A | TALAWADEKAR, Pradnya
TATA MEMORIAL CENTRE. MUMBAI. INDIA
Background: Life limiting conditions like congenital disorders, Cancer, HIV, Thalassemia, prevent
children from enjoying the possible quality of life that would normally be enjoyed by children.
The conditions bring with them pain, discomfort, medications, investigations, hospitalization
and emotional, psychological and social challenges. When holistic care by multidisciplinary
team is provided, quality of life of these children can improve to certain extent.
Aims: To assess the changes in quality of life of children with life limiting conditions after
organising the services at rural and urban centres in India
Methods: Children enrolled under CPC project were provided holistic care by multidisciplinary
ABSTRACTS 29
team. Peds QOL questionnaire was administered at every visit of the child to the centre. The
data was collected with SPSS software. It was analysed by paired T test for 577 samples. The
difference in the geographical settings was compared.
Results: Results:Quality of life with respect to physical functioning improved from 54% to 72%.
It improved with respect to emotional functioning from 28% to 60 %. With social functioning
it improved from 43% to 70% and with scholastic functioning it improved from 48% to 70%.
Conclusion/Discussion: With emphasis on holistic approach like adherence to symptomatic
treatment, counselling, networking with schools, peers, NGOs, co-ordinating adolescent
workshops, recreational activities, vocational guidance, referrals to supportive and rehabilitation
care; quality of life of children improves to a great extent.
LESSONS FROM INTEGRATION OF CHILDREN’S PALLIATIVE CARE IN EXISTING
HEALTH SERVICES IN UGANDA
KAVUMA, David
MILDMAY UGANDA
Background: Like in most African countries, Children’s palliative care (CPC) in Uganda
is not developed. It was against this background that the Diana, Princess of Wales Memorial
Fund supported Mildmay Uganda in building the capacity of Ugandan health workers in CPC to
support the integration of CPC in existing health services. Health workers with Certificate and
Diploma level qualification in CPC have been involved in the integration of CPC for almost two
years in various health facilities in Uganda.
Aims: This study aimed at: 1) Establishing the successes experienced by health workers in
integrating CPC in existing health services; 2) Identifying the challenges in integration of CPC
in existing health services in Uganda; 3) Exploring the solutions to challenges faced when
integrating CPC in existing health care services.
Methods: This was a qualitative study that utilized the phenomenology approach which aimed
at understanding the lived experiences of 15 health workers involved in integrating CPC. A
one-on-one semi-structured interview was utilized to collect data from 10 health workers that
included Medical Officer, Clinical Officers, Nurses and Social workers from 10 health facilities in
Uganda. The collected data was later analysed thematically.
Results: 92% routinely do continuing medical education to fellow staff especially during
interdisciplinary team meetings, 40% prescribe morphine and 30% have introduced play
therapy at their workplace. The challenges include human resource, governance and patient
factors.
Conclusion/Discussion: Capacity building of health workers in CPC and advocacy for
integration of CPC in existing health services are still critical.
LOCATION OF CARE: A TWO-YEAR REVIEW OF DEATHS UNDER THE WELSH PAEDIATRIC
PALLIATIVE CARE NETWORK
BENDLE, Elizabeth(1) | FRIESEN, Janis(2) | HAIN, Richard(1)
CHILDREN’S HOSPITAL FOR WALES, CARDIFF (1); ALBERTA CHILDREN’S HOSPITAL (2)
Background: The Welsh Paediatric Palliative Care Network provides specialist palliative care to
children with life-limiting and life-threatening conditions in Wales. The network provides end of
life care for children in the home, hospice and hospital settings. We aim for location of care to
be led by the child and family’s choice.
Aims: To establish the extent to which the Welsh Paediatric Palliative Care Network is able to
support choice of location for end of life care.
Methods: Retrospective review of all deaths of patients under our care between October 2013
and October 2015. Information was collected regarding age at death, diagnosis, ACT category
of illness, geographical location, hospice involvement, preferred place of death and actual place
of death.
Results: There were 47 deaths in total. Of these, 18 (38%) had an oncology diagnosis and 29
(62%) had a non-oncology diagnosis. Deaths occurred in hospital (21, 45%), home (20, 43%)
and in hospice (5, 11%). Among oncology patients the figures were home (14, 77%), hospital
(3, 16%) and hospice (1, 6%). Among non-oncology patients the corresponding figures were
hospital (19, 65%), home (6, 21%) and hospice (4, 14%). Overall, the proportion of home
deaths rose over the period of the study from 50% to 62%.
Conclusion/Discussion: 1. A majority of deaths among children referred to palliative care
occur at home or in a hospice. 2. A significant minority of deaths continue to occur in hospital
despite families’ preferences. 3. The pattern among oncology patients is different from those
in other groups, particularly in respect of access to hospice. We explore the reasons for these
findings and their significance for practice.
FRIDAY 20 MAY 14:30-16:00
VIERNES 20 DE MAYO 14:30 - 16:00
LOS CUIDADOS PALIATIVOS PEDIATRICOS Y LA SOLIDARIDAD INTERNACIONAL EN
EL CANCER INFANTIL
ASTUDILLO, Wilson(1) | QUESADA, Lisbeth(2) | ASTIGARRAGA, Itziar(3) | MENDINUETA,
Carmen(1) | SALINAS, Antonio(4) | LEILA, Kozak(5) | GURIDI, Marina(6) | MAZABUEL, Juan
Carlos(1)
PALIATIVOS SIN FRONTERAS - ESPAÑA (1); HOSPITAL NACIONAL DE NIÑOS, SAN JOSE COSTA
RICA (2); HOSPITAL UNIVERSITARIO DE CRUCES - ESPAÑA (3); HOSPITAL UNIVERSITARIO
VIRGEN DE LA CANDELARIA -TENERIFE-ESPAÑA (4); SAYBROOK UNIVERSITY , USA (5);
CENTRO DE SALUD DE MUTRIKU-GUIPUZCOA-ESPAÑA (6)
Aims or goal: Explicar la necesidad de hacer del cáncer el centro de la preocupación sanitaria
mundial porque mata más que el VIH/SIDA,tuberculosis y malaria juntos, por lo que se requiere
una política multinacional para conseguir más fondos para su investigación, producir fármacos
más eficaces, baratos y mejor tolerados y desarrollar los cuidados paliativos.
Design, methods and approach: Explicar las ventajas de considerar los Cuidados Paliativos
y la prevención y el tratamiento precoz del cáncer como dos elementos más de la solidaridad
entre los pueblos, porque se puede compartir mucho y conseguir cambios si los profesionales
del primer mundo abren sus hospitales para pasantías formativas de los profesionales y
hermanamientos de sus servicios con otros de paisesde pocos recursos. Se presenta el trabajo
de Paliativos Sin Fronteras (PSF) desde 2009 para ayudar a la formación de profesionales de
varios países en España y Chile en Paliativos, Oncología y dolor y el envio de su libro “Medicina
Paliativa en niños y adolescentes” para promover los hermamientos entre servicios pediátricos
de países ricos y pobres.
Results: PSF ha conseguido formar a 17 profesionales en España y Chile y 10 cooperantes de
PSF han colaborado en muchas labores formativas en varios países en paliativos y dolor con la
creación de una Unidad de Cuidados Paliativos en Yaoundé y otra de asistencia domiciliaria en
Bikop, los dos en Camerún. Se ha facilitado allí, el acceso a la morfina oral, lo que ha producido
un importante alivio del dolor a bajo precio.
Conclusion/Lessons learned: La solidaridad sanitaria entre países ricos y pobres puede
ser un elemento muy útil para la formación de profesionales, en la creación de estructuras
antiálgicas y paliativas y en el diagnóstico y tratamiento del cáncer y reducir así las grandes
desigualdades existentes.
ABSTRACTS 31
RED INTERNACIONAL DE ENFERMERÍA EN CUIDADOS PALIATIVOS
BOUSSO, Regina Szylit | SILVA, Lucía | MISKO, Maira Deguer | SANTOS, Maiara Rodrigues Dos
SAO PAULO UNIVERSITY
Background: La Red Internacional de Enfermería en Cuidados Paliativos, RIENCUPA, hace parte
de las redes de EnfAmericas (OPS/OMS) y su finalidad es identificar problemas y prioridades
comunes acerca de los cuidados paliativos, desde los niños hasta las personas mayores, para
orientar el aprendizaje, la práctica, gestión, investigación y educación de los enfermeros.
Aims: Presentar la propuesta de la Red Internacional de Enfermería en Cuidados Paliativos.
Methods: Revisión documental del proceso de aprobación de la Red en la VIII Conferencia
Iberoamericana de la Asociación Latinoamericana de Escuelas y Facultades de Enfermería
(ALADEFE), realizada en 2015, Rio de Janeiro, Brasil.
Results: La RIENCUPA es la estrategia de vinculación y cooperación entre enfermeros,
instituciones y organizaciones interesadas en el desarrollo de enfermería en cuidados paliativos,
con la finalidad de articulación e intercambio de experiencias, conocimiento y producción de
evidencias científicas que contribuyen a la formación de enfermeros y con asistencia a niños,
adultos y personas mayores en cuidados paliativos y sus familiares. Es integrada por enfermeros
de la práctica clínica, de la gestión, del campo de investigación científica y enfermeros docentes,
de los siguientes países: Brasil, Argentina, Uruguay, Chile, Estados Unidos, Colombia, España,
México y Perú. Estrategias que se han desarrollado hasta el momento: formación y consolidación
del equipo de trabajo; creación de los estatutos de la red; creación del manual Latinoamericano
de Enfermería en Cuidados Paliativos; creación de sitio Web; análisis y definición de prioridades
de estudios multicéntricos; conocimiento de experiencias de los participantes; intercambio de
avances en midias sociales.
Conclusion/Discussion: Se espera aportar al desarrollo de los recursos humanos de
enfermería en cuidados paliativos y la generación de nuevos conocimientos, promoviendo el
fortalecimiento para la pesquisa y para la práctica clínica en el área de cuidados paliativos
dirigidos a niños, adolescentes, adultos y personas mayores.
EVALUATION OF THE INDICATION OF PALLIATIVE CARE IN A NEONATAL INTENSIVE
CARE UNIT
MARÇOLA, Ligia | BARBOSA, Silvia Maria de Macedo | ZOBOLI, Ivete | POLASTRINI, Rita Tiziana
Verardo | CECCON, Maria Esther Jurfest Rivero
INSTITUTO DA CRIANÇA DO HOSPITAL DAS CLÍNICAS DA FACULDADE DE MEDICINA DA
UNIVERSIDADE DE SÃO PAULO
Aims or goal: Detect and characterize the proportion of children admitted to a Neonatal
Intensive Care Unit (NICU) of an universitary hospital who were in need of and/or were subjected
to palliative care when died in the period from 01/01/2012 to 07/31/2014.
Design, methods and approach: It was carried as a retrospective descriptive study using the
patients’ records for data collection. Inclusion criteria was newborns admitted to this NICU who
died in the period 01/01/2012 to 07/31/2014. Exclusion criteria was newborns who died within
48 hours of admission. Statistical analysis used was a simple descriptive one.
Results: During the study period there were 60 deaths; of these, 49 children died after at
least 48 hours. 18% were extremely premature infants and 75% had malformations. Palliative
Care was performed only in 20% of the cases. Multidisciplinary reunions were found in 16%
of the records, and only 22% of parents were followed by psychologists. A great number of
devices and painful invasive treatments were employed and many of the children had altered
pain scales.
Conclusion/Lessons learned: In the NICU of this study were detected concerns and
development of Neonatal Palliative Care. However, there is much to be improved and appropriate.
It is hoped that this work will help in proposing protocols and staff training for the best treatment
of the children in this NICU.
COMMUNICATING WITH SIBLINGS IN THE PERINATAL PALLIATIVE CARE CONTEXT
GIBELLI, Maria Augusta Bento Cicaroni(1) | GOMES, Ana Lucia(2) | BERNARDES, Lisandra
Stein(3) | BENUTE, Glaucia Guerra(2) | BERTOLASSI, Nathalia(4) | BARBOSA, Tercilia(5) |
KREBS, Vera Lucia Jornada(1) | FRANCISCO, Rossana P V(3)
BRAZIL (1); DIVISION OF PSYCHOLOGY, CLINICS HOSPITAL, UNIVERSITY OF SÃO PAULO, SÃO
PAULO, BRAZIL (2); 1DEPARTMENT OF OBSTETRICS AND GYNECOLOGY, UNIVERSITY OF SÃO
PAULO, SÃO PAULO, BRAZIL (3); NURSE DIVISION, CLINICS HOSPITAL, UNIVERSITY OF SÃO
PAULO (4); DIVISION OF SOCIAL WORKER, CLINICS HOSPITAL, UNIVERSITY OF SÃO PAULO (5)
Aims or goal: Siblings are frequently affected by the pregnancy of a fetus with potentially lethal
malformation. Sometimes, parents have difficulties to approach the subject with the siblings.
Aim: To present a case in which the perinatal palliative care group supported the parents in the
communication with their other children about the fetal disease.
Design, methods and approach: case report
Results: BBG, 36 y.o. married, three children: a 13 y.o. boy, a 8 y.o. girl and a 1 y.o. boy.
Severe hydrocephalus was diagnosed at 32 weeks and perinatal palliative care started at 34
weeks. Fetal prognosis was classified as uncertain, and the goal of care was to perform full
treatment (including neurosurgery) and artificial life support after birth. The couple understood
all the possible outcomes, but were unable to communicate to their other children about the
fetal disease. During Perinatal Palliative Care (PPC) conferences, we emphasize the meaning
of telling them their brother had a severe disease . After 3 consultations with the PPC, they
talked with the children but asked for an appointment for them with the group. The day after
the whole family came for a conference, in which the focus was to support the children through
their reaction. During the conference, the anxiety of the 8 y.o. girl about the need for a C-section
and the preoccupation with her mother’s health were brought up. The 13 y.o. boy showed more
interest in the possible outcomes of the newborn baby. He declared himself as part of “an
special family for an special child”. The mother told later to the group that this meeting was
very important for the children to cope with the situation.
Conclusion/Lessons learned: Conspiracy of silence may exist in the perinatal context in
order to try to minimize suffering of other children. Perinatal palliative care may help to prepare
all the members of the family, including other children, to deal with the fetal disease.
FACTIBILIDAD Y ACEPTABILIDAD DE UN REGISTRO DE PACIENTES PEDIATRICOS
EN ATENCIÓN PALIATIVA EN TRES INSTITUCIONES ARGENTINAS: RESULTADOS
PRELIMINARES DE UN ESTUDIO PILOTO
UZAL, Luciano Gabriel(1) | YAZDE PULEIO, María(2) | CHACON, Maria Sandra(3) | JOSOVIC,
Gabriela(3) | SASSI PRESTI, Silvina(4) | GOMEZ, Karina(2) | DUSSEL, Verónica(1)
INSTITUTO DE EFECTIVIDAD CLÍNICA Y SANITARIA (1); HOSPITAL GENERAL DE NIÑOS PEDRO
DE ELIZALDE (2); HOSPITAL PROVINCIAL NEUQUÉN - DR. EDUARDO CASTRO RENDÓN UNIDAD DE CUIDADOS PALIATIVOS PEDIATRICOS (3); HOSPITAL DE PEDIATRÍA DR. JUAN P.
GARRAHAN (4)
Background: Los registros de pacientes permiten monitorear la calidad de atención y establecer
estándares. Los cuidados paliativos pediátricos (CPP) no cuentan con sistemas de registro
eficientes. Se desarrolló un registro digital con potencial alcance nacional.
Aims: Evaluar la factibilidad, aceptabilidad y confiabilidad del Registro de Cuidados Paliativos
Pediátricos de la República Argentina (Recuppera)
Methods: Estudio piloto, abierto y longitudinal utilizando metodología mixta. Población: Muestra
no probabilística intencional. Fases: I) Capacitación de registrantes, II) Prueba de campo:
durante 7 meses se habrá utilizado el Recuppera para ingresar datos de consultas incidentes
consecutivos. La factibilidad, aceptabilidad y confiabilidad se evalúan mediante: monitoreo
ABSTRACTS 33
de bases de datos; auditoría de 10% de los datos/sitio; y entrevistas semi-estructuradas. Se
incluyeron tres equipos de CPP de hospitales públicos con variabilidad respecto al volumen de
pacientes, tipo de hospital y de atención. Habiéndose completado el 50% de la recolección de
los datos, aquí se presentaran resultados preliminares.
Results: El registro se instaló con éxito en las instituciones. Al momento se ingresaron un
total de 55 pacientes (Edad mediana 5.5 años) y 488 consultas (mediana de seguimiento
64 días). Siete pacientes fallecieron, 4 dados de alta y 1 contrarreferido. El tiempo de carga
fue de menos de dos minutos para el 50% de las consultas. Dos instituciones registraron a
todos los pacientes nuevos. En entrevistas se observa excelente aceptación del instrumento.
Se observaron dificultades de implementación posiblemente asociadas a un alto volumen de
pacientes.
Conclusion/Discussion: Estos resultados preliminares sugieren que el uso del Recuppera es
factible y tiene buena aceptación en los equipos de CPP. Se están diseñando estrategias para
superar las barreras identificadas.
LEARNING TO NURSE DYING CHILDREN: WHAT IS THE USE OF THEORY?
RANDALL, Duncan | SEPION, Elizabeth | DARLINGTON, Anne Sophie
UNIVERSITY OF SOUTHAMPTON
Aims or goal: Nurse education draws on nursing theories which do not acknowledge dying
and death as possible care outcomes for children. With no theoretical basis to draw upon many
nurses feel ill prepared to deliver care. Pragmatic Children’s Nursing is a new nursing theory
designed for children and their childhoods, which specifically takes account of palliative and end
of life care. In this paper our aims are to • Present an analysis of the literature on theories of
nursing in relation to palliative end of life care for children. • Present a conceptual analysis of
a exemplar case using Pragmatic Children’s Nursing theory • Appraise the implication for the
education of nurses of adoption of Pragmatic Children’s Nursing theory
Design, methods and approach: Joanna Briggs Institute literature reviewing methods were
used, including independent review of selected sources. Recognised concept analysis methods
were used to design and analyse a proposed exemplar case of a child’s end of life care using
the Pragmatic Children’s Nursing theory.
Results: Theories of nursing are orientated towards restoring health status and rehabilitation
to maximise function rather than recognising and supporting children to die well. Our analysis
of the exemplar case demonstrated how Pragmatic Children’s Nursing theory can be used to
help student nurses prepare to deliver care.
Conclusion/Lessons learned: The Pragmatic Children’s Nursing theory takes account of the
needs of children living with life threatening and limiting conditions. Because it is based on
clinical nursing practices it uncovers and theorises, rather than invents, the ways in which
nurses deliver care. Pragmatic Children’s Nursing theory allows educators and students to
model and prescribe prospective nursing interventions for children, allowing nurses to be better
prepared to deliver palliative and end of life care for children.
WE CAN BE HEROES
SIMMONS, Bronwen
Aims or goal: Bear Cottage is one of only two children’s hospices in Australia despite the fact
that we have a population of over 23 million people. For most of the community, unless they
have a child or family member who has been cared for in a children’s hospice, they are unaware
of the need and the importance of the services children’s hospices provide. Bear Cottage wanted
to establish a program that engaged school-aged children to not only fundraise Bear Cottage
but to also educate them and encourage empathy for children with special needs from a young
age. Bear Cottage Superhero Week was launched in 2012 to help explain the concept of why
children’s hospices are important and how children of all ages can support them. We designed
marketing material, television commercial and an accompanying video presentation (using the
relatable and positive Superhero theme) which was targeted at primary aged school children to
educate them so they could understand what the difficult concept of children’s palliative care.
Design, methods and approach: Oral presentation incorporating: PowerPoint presentation;
graphics and presentation of the tools used to engage schools including our Superhero
educational video: https://www.youtube.com/watch?v=5IkIz0LUYNw which was sent to preschools and primary schools.
Results: Over the last four years we have had hundreds of school children taking in Superhero
Week all over Australia. For most, this has been their first exposure to children’s hospices
and the services we provide. Whilst this event has raised much needed financial funds, more
importantly the feedback from teachers in terms of value of this event for their students as
an educational tool, has been overwhelmingly positive. Comments from schools include:
“Superhero Week has allowed our children to develop a new level of empathy, understanding
and support for children with different and challenging abilities in their lives. The children have
learnt to show acceptance and inclusion of all children”.
Conclusion/Lessons learned: We will continue to strive to educate the community, starting
from a young age, about the vital services that children’s hospices provide and the support and
empathy they can provide our most vulnerable children.
TRAINING NEEDS ANALYSIS IN DELIVERING END OF LIFE CARE TO NEONATES AND
CHILDREN IN A TEACHING HOSPITAL
VASUDEVAN, Chakrapani(1) | MCELLIGOTT, Fiona(2) | LEWIS, Danielle(1) | STORTON, Helen(1)
| MINCHELLA, Susan(1) | MCKEATING, Catriona(1)
BRADFORD TEACHING HOSPITALS NHS TRUST, UNITED KINGDOM (1); MARTIN HOUSE
CHILDREN`S HOSPICE UK (2)
Background: Bradford district has the highest prevalence of children living with life limiting
conditions in Yorkshire and Humber region (42.4 per 10,000) . There is a wide variation in
the level of training that nurses and midwives receive in issues related to end of life care and
understanding the gap in training would help us develop future structured training for the
nurses / midwives.
Aims: To explore the midwives and nurses (paediatric, neonatal, children’s community) views
regarding 1. previous training in end-of-life care 2. awareness and understanding of currently
available services 3. confidence in delivering various aspects palliative / end-of-life care.
Methods: The survey was constructed using the web-based programme surveymonkey.com(r).
Survey’s were approved by department managers and distributed in hard or soft copies. All data
was returned in soft copy and data was manually entered into the programme and analysed.
Results: 70 surveys were returned. 32 were from the paediatric wards, 24 from the neonatal
units, and the remainder from the children’s community nursing team, midwifery and neonatal
outreach. 52 (75%) reported never receiving formal training in end of life care and 22(31%)
reported having had ‘practical/on-the-job’ training, even though one third of the respondents
looked after children/families with end of life needs at least once a month. Majority of the
respondents felt confident in communicating with colleagues, doctors and families whereas
there was a perceived lack in understanding some of the legal aspects i.e involvement of
coroner. Formal debriefing was available for only 50% of the respondents and 80% of expressed
a need for further training in end of life care.
Conclusion/Discussion: This survey of self-reported needs and confidence of the nurses/
midwives identifies significant gap in formal training in end of life care and this gap needs to be
bridged through future training within the trust incorporating the specific components identified
by this survey.
ABSTRACTS 35
MANAGING TRANSITION FROM CURATIVE TO PALLIATIVE CARE: GP AND BEREAVED
PARENT EXPERIENCES
NEILSON, Sue(1) | GIBSON, Faith(2) | GREENFIELD, Sheila(3)
UNIVERSITY OF WORCESTER (1); GREAT ORMOND STREET HOSPITAL FOR CHILDREN/LONDON
SOUTH BANK UNIVERSITY (2); UNIVERSITY OF BIRMINGHAM (3)
Background: Children with cancer in the UK are treated in regional childhood cancer centres
(RCCC). Families and health care professionals can develop close working relationships over
the often-long duration of treatment. Cancer still accounts for largest numbers of childhood
disease-related deaths and as home is commonly the choice of location for palliative and end
of life care, the child and family can face transitions both from curative to palliative care
and from hospital to home. This paper reports on findings relating to these transitions from
the perspectives of parents and family doctors highlighting implications for both hospital and
community based health care practitioners.
Aims: To explore the experiences of bereaved parents and family doctors following the death
of a child with cancer in the family home.
Methods: Ethical approval was sought and obtained. In this qualitative study one-to-one semistructured interviews were undertaken with 18 GPs and 11 bereaved parents. The parents
were those whose child had received treatment for cancer at a RCCC in the UK and who died
at home, the GPs were those involved in the palliative care. Chronological comparative data
analysis using grounded theory was completed.
Results: Cessation of contact with the RCCC when the child receives palliative care at home
can be traumatic for parents. Hospital and community based health care professionals need to
carefully consider how they establish, maintain and end working relationships with the child
and family.
Conclusion/Discussion: Findings from this study provide a new perspective to the effective
management of transition in paediatric oncology palliative care; managing working relationships.
Findings highlight the need for hospital and community based staff to identify and employ
strategies that ensure working relationships with families are effectively managed prior to,
during and following the child’s transition from curative to palliative care.
MUSIC AND MEANINGFUL OCCUPATION WITH FAMILIES. EMPLOYING A
TRANSDISCIPLINARY APPROACH IN CHILDREN’S PALLIATIVE CARE
GRAY, Dee | BROWN, Anna
LAURALYNN CHILDREN’S HOSPICE
Background: Children with life- limiting and palliative conditions present with such complex
and rapidly fluctuating needs that opportunity for emotional expression, meaningful
occupation and interaction with their family members can be limited to care based duties. An
Occupational Therapist (OT) and Music Therapist (MT) developed a transdisciplinary outreach
service offering therapeutic based music that is embedded in typical family routines and
meaningful occupations.
Methods: OT and MT ran a pilot outreach service for 12 clients and their families over a 5
month period. Referrals were received internally and from acute hospitals. Session frequency
was determined by need and location. The medium of music was used in both structured
and improvised ways with the family unit, thus providing a non-threatening platform for
observation and discussion around meaningful daily routine tasks and how individualized
therapeutic strategies could be incorporated into them. A mixed methods approach was
adopted using an adapted ‘engagement profile’ to record client and family member’s
engagement levels. The Short Child Occupational Profile (SCOPE) standardized assessment
and satisfaction questionnaire were used to evaluate intervention
Results: Findings from SCOPE assessment and engagement profile indicated that
intervention promoted spontaneous interaction, engagement and self- expression despite
complexity of need and routine constraints. Results from the family questionnaire indicated
that family inclusion and accessible strategies enhanced carryover post sessions. ‘Memory
making’ arose as an emerging theme, sessions were acknowledged as positive memorymaking experience after the child had passed away.
Conclusion/Discussion: Transdisciplinary MT and OT outreach service helped to create
opportunities for therapeutic music that is encompassed in meaningful daily occupation and
therefore is accessible to the whole family. It has a role in supporting positive child, parent
and sibling interaction, self-expression and creating cherished memories. Further research is
needed to support these findings.
ADVOCACY WORKSHOP: FROM EXPERT PRACTITIONERS TO PASSIONATE
ADVOCATES
PETTUS, Katherine
INTERNATIONAL ASSOCIATION OF HOSPICE & PALLIATIVE CARE
Palliative care practitioners need specific advocacy tools to educate policymakers at all levels
of government about the need to make services more available to patients and families in the
community. These tools empower practitioners to translate their extraor-dinary bedside skills
into confident and passionate messages designed to persuade lawmakers to integrate palliative
care into health, education, and other critical policies. The International Association for Hospice
and Palliative Care, whose mission is to im-prove the quality of life of adults and children with
life-threatening conditions, is estab-lishing a virtual advocacy hub to connect providers at all
levels with opportunities to ad-vance palliative care policy and improve access to controlled
medicines in their coun-tries and regions. This workshop, led by global advocates, will discuss
how.
Objectives: To discuss how palliative care providers can be integrated into lively virtual
advocacy networks that will provide them with clear information about how to respond to
specific policy opportunities to promote palliative care for children and adults.
Sub-objectives: To create a space for global and national advocates to discuss what they
need in order to participate in an advocacy network and how that can function in the coming
year.
Format: Brief presentations by panelists, open moderated discussion. Collection of re-marks
for report, and distribution of report.
Panelists: Joan Marston, Zipporah Ali, Diederik Lohman, Katherine Pettus, Busi Nkosi
Moderator: Liliana de Lima
SATURDAY 21 MAY 09:00-10:30
SÁBADO 21 DE MAYO 09:00 - 10:30
BACK HOME: TRANSITION OF CARE FROM HOSPITAL TO HOME CARE FROM THE
PERSPECTIVE OF PALLIATIVE CARE
KUDO, Aide | NASCIMENTO, Andréa | FREITAS, Elaine | SOUZA, Fernanda | BAGIO, Priscila |
SILVA, Sandra | BARBOSA, Silvia
Background: The survival of children with chronic diseases has increased due to scientific and
technological advances in health care. Among them are children affected by non-oncologic
chronic diseases of central nervous system (CNS), dependent on mechanical ventilation and in
ABSTRACTS 37
need of continuous care of a multidisciplinary team. Although these children are clinically stable,
they can remain hospitalized for months or years, because their families aren’t emotionally and
structurally prepared to receive them at home.
Aims: To describe the hospital discharge process and continuity of treatment at home of
patients with non- oncological chronic diseases of CNS involvement, dependent on mechanical
ventilation admitted to a public hospital in Sao Paulo.
Methods: A retrospective chart analysis was conducted including children with non- oncological
chronic diseases and CNS involvement, dependent on mechanical ventilation, who remained
hospitalized and were discharged to their homes in the 2011-2015 period. The resources and
description of the preparation for discharge by the multidisciplinary team were evaluated.
Results: Seven children were evaluated, with lengths of stay ranging from 3 to 32 months.
Preparation for discharge included the following: assessment of socioeconomic and family
situation; purchase of equipments; home oxygen request; basic health care training (feeding,
medication, airways suction, hygiene); prescription/guidance to assisted technology device;
home adaptation; emotional support; communication with primary care. During the period of
this study, 05 patients remained at home, 01 was readmitted to the hospital and 01 died.
Conclusion/Discussion: The return of these children to their homes allow: reduced risk of
infection and complications related to the hospital environment; resumption of family bond
and everyday routine/activities; improved quality of life of the patient and family; optimized
hospital beds occupation and reduced hospital costs.
IDENTIFYING INTERVENTIONS RELATED TO AN EFFECTIVE TRANSITION
FROM CHILDREN’S TO ADULT CARE FOR YOUNG ADULTS WITH LIFE-LIMITING
CONDITIONS: FINDINGS FROM MIXED METHODS RESEARCH IN IRELAND
KERR, Helen(1) | O’HALLORAN, Peter(1) | NICHOLL, Honor(2) | PRICE, Jayne(3)
SCHOOL OF NURSING AND MIDWIFERY, QUEEN’S UNIVERSITY BELFAST (1); TRINITY COLLEGE
DUBLIN (2); KINGSTON UNIVERSITY AND ST GEORGE’S, UNIVERSITY LONDON (3)
Background: Improvements in care and treatment have led to more young people with lifelimiting conditions living beyond childhood, which means they must make the transition from
children’s to adult services. However, there is little evidence on transition services in palliative
care, with few models of good practice in the literature.
Aims: To provide an overview of the transition services provided to young adults with lifelimiting conditions in Ireland, identifying models of good practice and the factors influencing
the quality of care.
Methods: A realist evaluation approach using a mixed methods design with four phases
of data collection:a questionnaire survey of health, social, educational and charitable
organisations providing transition services to young adults in Northern Ireland and one
Health Service Executive area in the Republic of Ireland with 104 individual responses from
29 organisations; interviews with eight young adults, two focus groups with parents/carers
and 17 interviews with service providers. Data was thematically analysed seeking to explain
the impact of services and interventions, and to identify organisational factors influencing the
quality of care.
Results: Eight interventions were identified associated with a successful transition to adult
care:an early commencement, effective communication between children’s and adult services,
orientation strategies, a transition coordinator, an interdisciplinary and interagency approach,
developing the young adults’ autonomy, person-centred approach and supportive parents.
Contextual factors influencing the quality and continuity of care included the presence of a
capable adult service.
Conclusion/Discussion: An effective transition should be seen as a core responsibility for
both children’s and adult services, however, as transition is an emerging issue for young
adults with life-limiting conditions, this research provides new insights into the interventions
considered to lead to positive outcomes in the transition to adult care.
EXPRESSION OF A TEENAGER IN PALLIATIVE CARE WITH OSTEOGENESIS
IMPERFECTA AND HER MOTHER – THEIR SOCIAL NETWORK PROFILE
BORGHI, Camila Amaral | BOUSSO, Regina Szylit | ROSSATO, Lisabelle Mariano | DOS SANTOS,
Maiara Rodrigues
Background: Pediatric palliative care is an approach for end of life situations, but is not
limited to it. Children with long-term chronic disease need broad type of support and can be
favored by palliative care. An increasing number of health related virtual communities show
that people use virtual socialization also looking for support.
Aims: The aim of this study was to explore the use and the content of the social network
Facebook by an adolescent with a genetic disease requiring palliative care and her mother.
Methods: This is a qualitative, case study research, using virtual Ethnography and content
analysis. In a period of one year, ninety four comments posted - including photos and
messages were analyzed - in a 16 years old female adolescent and her mother Facebook
profiles. The teenager has osteogenesis imperfecta, also known as brittle-bone disease. It
is a genetic and inherited disorder characterized by fragile bones, causing multiple fractures
and pain without a specific cause. All posts, comments and photos were decoded for content
analysis.
Results: It was possible to identify themes that include: feelings and emotions, coping
with stigma and prejudice and religious beliefs. These themes captured the manifestation of
feelings usually retracted and the interaction of social issues, which are hardly treated openly,
and are essential in a palliative approach, especially with school age child and adolescents.
Conclusion/Discussion: Virtual social networks have an important role for expressing and
communicating stories, thoughts and feelings. This teenager and her mother shared their
suffering, coping abilities, beliefs and daily tasks with friends. Considering that palliative care
can enhance quality of life, and may also positively influence the course of illness; providing
relief from pain and other distressing symptoms, virtual social networks can be an important
tool for health professional to get closer to children, adolescents and families.
REFLEXIONES DE UN GRUPO DE MADRES DE DUELO “LAS SIN NOMBRE”
MARTINEZ, Noemi | MEDINA, Rosa | PUENTE, Nahir | SANTOS, Marta Lidia | SOSA, Beatriz |
SUAREZ, Maria de Los Angeles | VALLEJOS, Judith | ALONSO, Monica
FUNDACIÓN NATALI DAFNE FLEXER
Background: Hace 10 años la Fundación Flexer comenzó a realizar grupos para padres en
duelo coordinado por dos terapeutas, de estos grupos algunas madres quisieron continuar
reuniéndose en el mismo espacio y a la misma hora, para seguir acompañándose,sin
coordinación profesional. Desde entonces se reúnen mensualmente. Realizan manualidades
que donan en los hospitales donde sus hijos fueron atendidos. Reciben a padres de duelos
recientes y los acompañan.
Aims: Compartir las experiencia, sentimientos y aprendizajes, generadas en un grupo de
madre de duelo luego de más de 5 años de la partida de su hijo. Transmitir a los equipos de
salud sus vivencias y reflexiones.
Methods: Antecedentes de la formación del grupo. Descripción de la modalidad de los
encuentros, actividades desarrolladas
Results: A lo largo de 10 años de funcionar como grupo, se generó un espacio donde
expresar sentimientos libremente, sentirse escuchadas y reconocidas en el dolor por la
pérdida del hijo. Compartir experiencias y sentimientos entre madres que perdieron a su hijo,
permite un clima grupal de paz y armonía donde no es necesario explicar una sonrisa o una
lágrima. El respeto y la comprensión son los pilares del grupo. Este clima grupal generó la
posibilidad de invitar a padres de duelos más recientes a unirse al grupo y recibir apoyo. Los
padres que lo realizaron expresaron su agradecimiento y beneficio de no sentirse solos.
ABSTRACTS 39
Conclusion/Discussion: El dolor por la muerte de un hijo no tiene nombre. La imposibilidad
de nombrarlo da cuenta de la inmensidad del mismo. El grupo es una posibilidad para
comenzar a abarcarlo de alguna manera, a poner palabras y silencios compasivos. Es un
espacio donde sentir que se puede continuar a pesar del dolor que por momentos se hace
insostenible. El grupo es un espacio de intercambio de sentimientos profundos y complejos
donde el respeto y la ausencia de juicio de valor son los pilares que lo sostiene. Las madres
se acompañan entre ellas e invitan a padres de duelos más recientes a ser acompañados. En
este espacio se sana sanando, se escucha aliviando. Se permite retomar la vida de la forma
que cada uno pueda.
TRATAMIENTO OPIOIDE DEL DOLOR MIXTO EN PACIENTES PEDIÁTRICOS
ASISTIDOS POR EL EQUIPO DE CUIDADOS PALIATIVOS. CINCO AÑOS DE
EXPERIENCIA
YAZDE PULEIO, María L | MAJDALANI, Ana | SANTOS, Gisella Estela | GÓMEZ, Karina |
PIGLIAPOCO, Vilma
HOSPITAL GENERAL DE NIÑOS PEDRO DE ELIZALDE
Aims or goal: Describir el tratamiento farmacológico del dolor mixto en pacientes asistidos
por el Equipo de Cuidados Paliativos en el Hospital General de Niños Pedro de Elizalde.
Design, methods and approach: Estudio restrospectivo descriptivo. Utilizamos las historias
clínicas de pacientes asistidos desde 2011-2015. Las variables en estudio fueron: opioide
inicial, uso de adyuvantes y rotación de opioides.
Results: Incluimos 72 pacientes, la media de edad fue 10,09 años; 59 casos correspondieron
a patología oncológica. El opioide de inicio fue morfina en 57 casos; 35 pacientes requirieron
rotación, 20 fue por decisión del equipo médico, 6 por falta de respuesta y sólo 3 por efectos
adversos. 48 de 72 pacientes recibieron medicación adyuvante, estos tuvieron 4 veces más
probabilidad de rotar.
Conclusion/Lessons learned: La fisiopatología del dolor mixto requiere un abordaje
eficaz para lograr el alivio con diversas combinaciones de fármacos. La mayoría inició con
morfina porque el inicio de acción es más rápido, si bien no está descripto que actúe sobre
el componente neuropático del dolor mixto; cuando la intensidad fue severa se inició el
tratamiento con morfina más un adyuvante. La asociación observada entre la presencia de
adyuvantes y la rotación de opioides se vincula al tipo e intensidad de dolor. La rotación
ocurrió en aproximadamente la mitad de los casos, la causa más frecuente fue la decisión
médica, luego de la evaluación minuciosa cuando la analgesia no fue adecuada, anticipando la
aparición de efectos adversos. La rotación más frecuente fue morfina a metadona, ésta tiene
mejor perfil farmacodinámico para tratar el dolor mixto porque actúa sobre receptores NMDA.
Este estudio nos permitió objetivar la utilidad de los opioides en el tratamiento del dolor mixto
en niños, el uso de adyuvantes, así como la indicación y oportunidad de rotación. La rotación
de opioides es una herramienta útil en el manejo del dolor mixto de difícil manejo en niños.
La metadona debería considerarse una alternativa segura y eficaz.
La combinación de distintos mecanismos en el origen del dolor mixto conlleva la necesidad de
abordar a cada uno de forma eficaz para lograr el alivio y requiere diversas combinaciones de
fármacos. Los opioides están presentes en todos los casos, los que iniciaron el tratamiento
con metadona eran adolescentes porque permite mejor monitoreo del efecto terapéutico y de
efectos adversos, así como optimiza la adherencia al tratamiento. Series de casos demuestran
eficacia analgésica de la metadona en el tratamiento del dolor neuropático. La mayoría inició
con morfina porque permite un control del dolor más rápido, si bien no está descripto que actúe
sobre el componente neuropático del dolor mixto, cuando la intensidad fue severa se inició el
tratamiento con morfina más un adyuvante. La asociación observada entre la presencia de
adyuvantes y la rotación de opioides se vincula al tipo e intensidad de dolor. La rotación ocurrió
en aproximadamente la mitad de los casos, la causa más frecuente fue la decisión médica,
luego de la evaluación minuciosa cuando la analgesia no fue adecuada, anticipando la aparición
de efectos adversos. La rotación más frecuente fue morfina a metadona, dado que tiene mejor
perfil farmacodinámico para el control del dolor mixto al actuar sobre receptores NMDA. Este
estudio nos permitió objetivar la utilidad de los opioides en el tratamiento del dolor mixto en
niños, el uso de adyuvantes, así como la indicación y oportunidad de rotación. La rotación de
opioides es una herramienta útil en el manejo del dolor mixto de difícil manejo en niños. La
metadona debería considerarse una alternativa segura y eficaz.
USO DOMICILIARIO DE KETAMINA (K) PARENTERAL EN EL TRATAMIENTO DE
DOLOR ONCOLÓGICO EN CUIDADOS PALIATIVOS PEDIÁTRICOS (CPP)
ORTIZ, Lucía(1) | ROLLÁN, Eva(2) | RIGAL, Manuel(1) | PARRA, Fátima(1) | PUERTAS,
Verónica(1) | MORENO, Alicia(1) | BARCELÓ, Marta(1) | MARTINO, Ricardo(1)
HOSPITAL UNIVERSITARIO NIÑO JESÚS (1); HOSPITAL SANT JOAN DE DÉU (2)
Background: Más del 80% de los niños que padecen patología oncológica incurable tiene
dolor intenso.Los tumores sólidos progresivos infiltran tejidos sanos y producen dolor mixto,
difícil de controlar.La K a dosis subanestésicas tiene efecto analgésico útil en el tratamiento de
dolor que responde mal a opioides.
Aims: Evaluar la efectividad y seguridad del uso parenteral de K en el tratamiento de dolor
oncológico de pacientes atendidos en domicilio por una Unidad de CPP (UCPP).
Methods: Estudio descriptivo observaciones retrospectivo de pacientes con enfermedades
oncológicas incurables atendidos por una UCPP del 1/09 al 10/15, N= 227. C. de inclusión: padecer
dolor 2º a enfermedad oncológica incurable refractario a opioides.Variables:edad,diagnóstico
principal,tipo de dolor,vía,dosis de K, tiempo de administración,grado de control del dolor,efectos
adversos.
Results: Se identifican 14 pacientes de 1 mes a 23 años de edad. Todos padecieron tumores
sólidos:osteosarcomas, ependinomas, neuroblastomas, glioblastomas y rabdomiosarcomas.
La K se utiliza en perfusión continua (PC) en el 93%,de ellos el 33% vía subcutánea (SC).
Dosis media máxima: 0,3 mg/kg/h. Duración del tratamiento: de 2 a 82 días. En todos los
casos el uso de K se añadió al tratamiento con opioides.La K proporcionó analgesia suficiente
en el 86% de los casos.Efectos adversos:eritema cutáneo,1 paciente a las 84 horas del inicio
de la PC por vía SC; en los casos de uso SC en de K diluída 1/5 no se detectaron reacciones
adversas.En todos los pacientes se asocia midazolam en PC.Aparecen efectos sistémicos
en 2casos:niño de 3 años con meduloblastoma (hipotensión) y adolescente de 14 años con
sarcoma de Ewing (acatisia).
Conclusion/Discussion: Los pacientes atendidos en UCPP por enfermedades oncológicas
pueden tener dolor mixto refractario a opioides. El uso de K parenteral mejora el control de
su dolor y su uso adecuado hace que efectos indeseables sean desdeñables.
SIGNOS DE SUFRIMIENTO E INTERVENCIONES MUSICOTERAPEUTICAS EN BEBES
CON ENFERMEDADES AMENAZANTES PARA LA VIDA
SOLARZ, Gabriel Alejandro
Aims or goal: Identificar signos de alerta de sufrimiento en bebes(0 a 18 meses) a partir de
sus formas de juego y vinculación. Pensar estrategias a partir del juego y los intercambios
sonoros para generar alivio y fortalecer el afrontamiento del niño y su cuidador
Design, methods and approach: Una dificultad que se presenta en nuestro trabajo
cotidiano es poder evaluar con herramientas concretas el sufrimiento de los bebes . A partir
de la observación de la dinámica del juego y el vinculo con los cuidadores primarios podemos
observar signos de alarma o de alerta que nos ayudan a identificar el sufrimiento, la ansiedad
o la depresión en los bebes. Esto es el primer paso para poder desarrollar una estrategia que
facilite, a partir del juego y las intervenciones especificas del musicoterapeuta, la adquisición
de herramientas de afrontamiento en el niño y un fortalecimiento en la capacidad de cuidado
ABSTRACTS 41
por parte de la madre o cuidador primario.
Conclusion/Lessons learned: Los bebes diagnosticados con enfermedades que amenazan
la vida evidencian signos en su forma de jugar, expresarse, y vincularse que dan pautas
de sufrimiento. Esto está relacionado con la vivencia que implica estar enfermo, y en como
impacta en el vinculo con los cuidadores el diagnostico. La utilización del juego y los recursos
sonoro expresivos como estrategia de intervención permiten favorecer formas sanas de
vinculación y adquisición de herramientas de afrontamiento por parte del niño, disminuyendo
los signos de alerta mejorando la calidad de vida del niño y la capacidad de cuidado.
EXPERIENCIA DE MANEJO DE DOLOR SEVERO CON BUPRENORFINA TRANSDERMICA
EN CUIDADOS PALIATIVOS NO ONCOLOGICOS EN PEDIATRIA
SALADO AVILA, Maria Magdalena | TEMPLOS ESTEBAN, Luz Adriana | VAZQUEZ ZAVALA,
Genoveva
HOSPITAL GENERAL DR. MANUEL GEA GONZALEZ MEXICO.
Aims or goal: Determinar que el uso de la buprenorfina transdérmica es eficaz y segura en
Cuidados Paliativos Pediátricos para control de dolor severo.
Design, methods and approach: Es un estudio Retrospectivo que incluyó expedientes
clínicos nueve pacientes en el periodo de enero 2014- enero 2016 que ingresaron a
la División de Clínica de Dolor y Cuidados Paliativos que cumplieron con criterios de
terminalidad. Se evaluaron las siguientes variables: intensidad del dolor, diagnóstico de
ingreso, días de tratamiento, dosis media de buprenorfina y efectos adversos (naúsea,
vómito, estreñimiento, sequedad de boca, prurito, otros) Se utilizó estadística descriptiva con
medidas de tendencia central y chi cuadrada.
Results: En los 9 casos el dolor disminuyó en un rango de 0 a 4 medido en diferentes
escalas (CRIES, EVA, Susan Givens). Los diagnósticos de ingreso en los 9 casos incluyeron:
Condiciones con discapacidad grave y no progresiva que causan vulnerabilidad a
complicaciones: - Parálisis cerebral infantil - Prematurez extrema - Daño cerebral por hipoxia
o anoxia - Holoprosencefalia u otras malformaciones cerebrales grave Los días de tratamiento
oscilaron entre 7 días a 2 años. La dosis media de buprenorfina utilizada fue de 3 a 10 mcg/
día. (todos los niños utilizáron parches de 35 mcg/hr y se recortó el parche de acuerdo a lo
requerido) Soló en un caso se reportó cefalea al inicio del tratamiento.
Conclusion/Lessons learned: La buprenorfina transdérmica es eficaz y segura para el
control de dolor severo en Cuidados Paliativos Pediátricos No Oncológicos.
ADVANCING GLOBAL ADVOCACY AND SHARING OF GOOD PRACTISE: WORKSHOP
ON UTILISING THE MEDIA AND SOCIAL NETWORKING TO PROMOTE CHILDREN’S
PALLIATIVE CARE
BOUCHER, Sue | SITHOLE, LORNA
ICPCN
Aims or goal: The presentation aims to provide up-to-date information to attendees on
how to use the latest technology and social media platfomrs to improve advocacy and
communication in children’s palliative care.
Design, methods and approach: There are vast discrepancies in children’s palliative care
development worldwide, resulting in very different experiences of care provision, making it
vitally important to share good practice to improve children’s palliative care globally. ehospice
is a modern, relevant and regularly updated international news and information website
and free app with several editions managed by participating organisations from around the
world. It reports on pertinent and significant news, often in real time, and brings together the
expertise and experience of the global hospice and palliative care community. ehospice has
the potential to improve the care of patients and their families by providing a point of access
to news, information and resources that can be used for advocacy and research as well as
fostering a sense of community in the world of hospice and palliative care. The presentation
will also look at best practice for using social media platforms for advocacy in CPC.
Results: ehospice has been in publication for 3 years in October 2015. In this time there
have been 1.2 million visits from 653,000 users and over 11,000 articles have been
published. Social media sites such as Facebook and Twitter can also attract and inform the
general public on important CPC issues.
Conclusion/Lessons learned: Following this presentation attendees will have a greater
appreciation of the ways in which ehospice can be used and drawn upon as an advocacy
resource, a research tool and a media outlet through which to publicise research, events,
advances and gather support for local, national and international advocacy campaigns. They
will be able to make better use of social media platforms to advocate for CPC.
ABSTRACTS 43
POSTER PRESENTATIONS
/
PRESENTACIONES DE POSTERS
A new set of posters will be on display each day with the top 10 highlighted by being placed in the Central Hall. Top 10 are circled.
Posters from the different conference tracks on show each day will be as follows:
• Day 1 – 19th May 2016 - Psychological aspects and Organisation of Services
• Day 2 – 20th May 2016 – Pain and symptom management, perinatal palliative care and transitions
• Day 3 – 21st May 2016 – Ethics, spiritual care, Education, Non-communicable diseases and family and volunteers perspective
Los 30 mejores Posters, agrupados 10 por día, serán exhibidos en el hall central. Los Top 10 de cada día
tienen como marca un círculo. Los Posters ordenados por áreas temáticas se exhibirán de la siguiente forma:
• Día 1 - 19 de de mayo de 2016 - Aspectos psicológicos y Organización de Servicios
• Día 2 - 20 ° de mayo de 2016 -Dolor y manejo de síntomas, CP perinatales y Transiciones
• Día 3 - 21 de mayo de 2016 - Ética, cuidado espiritual, Educación, Enfermedades no transmisibles y
perspectiva de familiares y voluntarios.
DAY 1 THURSDAY 19 MAY
DIA 1 - JUEVES 19 DE MAYO
1 - EL DIARIO DE AIDA (TOP 10)
LEÓN, Catalina(1) | LASCAR, Eulalia(2) | RODRIGUEZ GILES, Florencia(1) | HOLLMANN,
Margarita(1) | RODRIGUEZ GONI, Eugenia(1)
ASOCIACIÓN CIVIL VERGEL, ENTRELAZANDO EL ARTE Y LA SALUD. CIUDAD AUTÓNOMA DE
BUENOS AIRES, ARGENTINA (1); EQUIPO DE CUIDADOS PALIATIVOS HOSPITAL DE NIÑOS DR.
R. GUTIERREZ, CIUDAD DE BUENOS AIRES. ARGENTINA. (2)
Aims or goal: Relatar la experiencia y el impacto de la participación en el Programa“Pintando
en el Hospital”, de una paciente de 17 años,internada por una complicación de suleucemia
mieloide aguda. El Programa “Pintando en el Hospital” de la Asociación Civil Vergel se lleva
a cabo dentro del Área de Terapias No Farmacológicasde la Unidad de Cuidados Paliativos
Pediátricos de un Hospital de Niños de la Ciudad de Buenos Aires, Argentina, desde el año
2010. Brinda clases personalizadas de dibujo, pintura e historia de las artes visuales a niños
y adolescentes que padecen enfermedades limitantes para la vida, en cualquier momento de
la enfermedad. Dicho programa se focaliza en el aspecto vital del paciente a través de su
creatividad y capacidad de aprendizaje.
Design, methods and approach: Entre febrero 2013 a marzo 2014 se realizaron 44 clases
de arte; todos los encuentros en su habitación, con una duración entre 90 y 120 min.Durante
la práctica se tuvieron en cuenta su estado físico y emocional. Se realizaron registros de la
actividad y el impacto de cada encuentro.
Results: 1- El aprendizaje artístico le ofreció una alternativa al aislamiento y a la inactividad
forzada, resultantes de la enfermedad. 2- Le ayudo arecuperar su condición de sujeto ante la
misma. 3- Colaboró con el alivio de síntomas y el sufrimiento por la enfermedad.
Conclusion/Lessons learned: La práctica artística le proporciono bienestar, aumentando su
autoestima. La realización de un diario íntimo se convirtió en su proyecto artístico personal. Crear
y desarrollar un proyecto propio le posibilitó habitar el tiempo de otra manera y posicionarse en
un lugar de creadora más allá de su condición de paciente. Al representar imágenes de aquello
que anhelaba pudo en parte, restituir el vínculo con su lugar de origen.
2 - BEREAVED PARENTS’ EXPERIENCES AND WISHES AT THE END OF LIFE OF THEIR
CHILD WITH SPINAL MUSCULAR ATROPHY TYPE I-II: A 10-YEAR NATIONWIDE
FOLLOW-UP (TOP 10)
LÖVGREN, Malin(1) | SEJERSEN, Thomas(1) | KREICBERGS, Ulrika(2)
KAROLINSKA INSTITUTE (1); ERSTA SKÖNDAL UNIVERSITY COLLEGE (2)
Background: Spinal muscular atrophy (SMA) is a rare and severe disease that is characterized
by slowly progressive muscle weakness. Despite that most parents of children with severe
SMA face their children’s death before the child’s second birthday poor knowledge exists about
parents’ experiences and wishes about the care at the end-of-life of their child.
Aims: To explore experiences and wishes of bereaved parents with a child with severe SMA at
the end-of-life of their child’s care.
Methods: This 10-year nationwide follow-up survey was conducted 2013 on parents of children
who were born in Sweden between the years 2000 and 2010 and later diagnosed with severe
SMA type I and II (N=48). The questions used in this study covered location of death, support
from health care staff and wishes and concerns about the care of their child in the end-of-life.
Results: Half of those who had wishes about location of death (16/32) wanted that their child
would die at home—the other half at the hospital. All of those who wanted that their child
would die at the hospital got their wishes fulfilled. Corresponding figures for those who wanted
that their child should die at home was 10/16. Of those who talked to a physician about how
they wished their child would pass away (N=26), all but two had their wishes fulfilled. A vast
majority of parents perceived health care staff as supportive at end of life. Few siblings (N=36)
were offered psychosocial support.
Conclusion/Discussion: Parents’ communication with the physician about their wishes and
concerns regarding their child’s end-of-life care and preferred location of death contributed to
fulfilled wishes. The possibility for the child to die at home for those who wish need to increase
and the psychological support to healthy siblings need to be improved.
3 - “CUIDADOS PALIATIVOS DOMICILIARIOS. DOLORES DEL CUERPO, DOLORES DEL
ALMA. INTERVENCIÓN PSICOLÓGICA” (TOP 10)
MADEMANN, Mónica Vivián | CAPDEVILA, Victoria
CAREHOME - DIVISIÓN CUIDADOS PALIATIVOS DE NUTRIHOME
Aims or goal: El objetivo de la presentación es exponer los beneficios tanto para el paciente
como su familia que resultan de la derivación temprana a un equipo de Cuidados paliativos
Domiciliarios.
Design, methods and approach: Este trabajo se realizó en base a la experiencia de varios
años interviniendo como psicólogas en un equipo de Cuidados Paliativos Domiciliarios.
Results: Los cuidados paliativos se especializan en la atención integral centrada en la
identificación y el alivio del “dolor total” que incluye aspectos físicos, psicológicos, sociales y
espirituales de una enfermedad grave. Su objetivo es mejorar la calidad de vida de los pacientes
en cualquier etapa de la enfermedad, independientemente de los planes terapéuticos vigentes.
Generalmente, los cuidados paliativos son erróneamente relacionados con los cuidados que
se proporcionan al final de la vida. En la práctica diaria esto lleva a que sean proporcionados
tardíamente, cuando las intervenciones modificadoras de la enfermedad ya no son una opción
o el paciente ya no las desea. Ofrecerle al paciente tempranamente el dispositivo de cuidados
paliativos domiciliarios, seria pensar en su calidad de vida, trabajando diferentes aspectos
como la comunicación, la expresión de emociones, la toma de decisiones, etc; brindándole un
tratamiento integral, respetando su ser persona y resaltando su individualidad, y su subjetividad,
más allá del deterioro físico y la dependencia que la enfermedad pueda generar.
Conclusion/Lessons learned: Podemos afirmar que una derivación temprana al Equipo de
Cuidados paliativos Domiciliarios le va a permitir al paciente y la familia , una mejor calidad de
vida, a partir del manejo del dolor tanto físico como psíquico, así como procesar sus ansiedades
y vivencias en un espacio propio, conocido, donde le será más factible sentirse el protagonista
de su historia.
Podemos afirmar que una derivación temprana al Equipo de Cuidados paliativos Domiciliarios le
va a permitir al paciente y la familia , una mejor calidad de vida, a partir del manejo del dolor
tanto físico como psíquico, así como procesar sus ansiedades y vivencias en un espacio propio,
conocido, donde le será más factible sentirse el protagonista de su historia.
4 - CARING FOR CHILDREN WITH PROGRESSIVE LIFE SHORTENING ILLNESSES IN
HOSPITAL: EXPERIENCES OF PEDIATRIC NURSES (TOP 10)
MCCONNELL, Shelagh | RAFFIN BOUCHAL, Shelley | MOULES, Nancy | RALLISON, Lillian
UNIVERSITY OF CALGARY
Background: Caring for children with Progressive Life Shortening Illnesses (PLSIs) in pediatric
acute care is both rewarding and challenging for nurses. Despite the significant number of
pediatric nurses who care for children with PLSIs and their families on general acute care units,
little is known about the benefits and difficulties these nurses experience through their work.
Aims: The intent of this doctoral study was to further understand the experiences of pediatric
nurses caring for children with PLSIs in the context of pediatric acute care, with the goal to
better support nurses in this valuable work.
Methods: Eight nurses from a general pediatric hospital unit were individually interviewed.
ABSTRACTS 45
Data in the form of transcribed interviews were analyzed according to the tradition of Gadamer’s
philosophical hermeneutics.
Results: Nurses revealed that they struggle to care for children with PLSIs, whose lives are
shrouded with uncertainty in a death-denying culture that values cure and treatment. Nurses
recognize the rewards and beauty of their work despite carrying a burden, even darkness, from
what they see and do in practice. Nurses’ also struggled when excluded from the decisionmaking table. Nurses acknowledged that their ability to work in this area was time limited as
they were aware that the challenges of the work would eventually outweigh the benefits.
Conclusion/Discussion: Given the struggles nurses encounter in their work in the hospital
setting caring for children with PLSIs, pediatric acute care nurses need to be well supported.
This may be accomplished by facilitating nurse-to-nurse support and encouraging nurses to
participate in decision-making meetings around care plans for children with PLSIs in their care.
5 - PARENTS’ EXPERIENCE DURING THE CHILD’S DYING PROCESS AT THE ONCOLOGY
UNIT (TOP 10)
SANTOS, Maiara Rodrigues Dos | MISKO, Maira Deguer | SILVA, Lucía | BOUSSO, Regina Szylit
Background: The relationship established between healthcare providers, parents and children
during end-of-life caring is complex and multidimensional. There are still few evidences
which explore how these relationships during the child’s last hospitalization influence parental
adaptation after the child’s death.
Aims: To understand parents’ experience in their relationships with healthcare providers during
the dying process of children with cancer at the hospital.
Methods: This is a qualitative study and the philosophical hermeneutic was used. Family
members were interviewed at least 6 months after the child’s death from cancer in the hospital.
For the recruitment, key informants and a search in pediatric hospital’s obituary helped to identify
families. Each interview was audiotaped and transcribed. For the analysis, units of meaning
and clusters were identified, then categories were inductively determined and submitted to an
interpretation process.
Results: The most relevant aspects emerged in parents’ experience regarding the relationship
established with healthcare providers were communication, bond, care access, competence,
values and beliefs. The presence of these elements influences the way parents perceive their
role while they live the unexpected experience of losing a child and remain in their memories
associated with the meanings attributed for the illness and the loss. The relationship established
during the child’s end-of-life between families and healthcare providers serves as the basis to
strengthen and support the exercise the parenting role and becomes a remarkable reminder
that they keep as a permanent connection to the deceased son. By revisiting these memories,
meanings arise influencing their grieving process.
Conclusion/Discussion: The quality of parents’ bond formed with the healthcare providers
is a concrete reminder of the child’s last days and the illness trajectory. Policies in pediatric
palliative care must emphasize directives to enhance the practice allowing families to maintain
the secure bond after the child’s death, helping to prevent complicated grief.
6 - PLACE OF DEATH OF CHILDREN WITH COMPLEX CHRONIC CONDITIONS. A CROSSNATIONAL STUDY IN ELEVEN COUNTRIES (TOP 10)
HAKANSON, Cecilia(1) | ÖHLÉN, Joakim(1) | KREICBERGS, Ulrika(1) | HOUTTEKIER, Dirk(2) |
DELIENS, Luc(2) | COHEN, Joachim(2)
PALLIATIVE RESEARCH CENTRE ERSTA SKÖNDAL UNIVERSITY COLLEGE, STOCKHOLM SWEDEN
(1); END-OF-LIFE CARE RESEARCH GROUP, VRIJE UNIVERSITEIT BRUSSEL AND GHENT
UNIVERSITY, BRUSSELS, BELGIUM (2)
Background: Cross-National understanding of place of death of children with complex chronic
conditions (CCC) is crucial for health service systems in providing efficient and equal access to
pediatric palliative care.
Aims: To examine where children with CCC die, and to investigate associations between place
of death and sex, cause of death and country.
Methods: The study used death certificate data from 2008 of all deceased children 1-17 years
(n=40,624) in 11 European and non-European countries. Data were explored and multivariable
logistic regression performed to determine associations between place of death and other factors.
Results: Between 24.4% (USA) and 75.3% (Spain, Andalusia) of children 1-17 years died of
CCC. Of these between 6.7% (South Korea) and 42.4% (New Zealand) died at home. Among
the children who died from neuromuscular diseases, 12.7% (South Korea) to 48.3% (Mexico)
died at home. In deaths caused by malignancies, home deaths ranged from 1.8% (South
Korea) to 60.8% (Belgium). Deaths from cardiovascular diseases and other CCC occurred less
often at home. Multivariable logistic regression showed variations in associations between place
of death and cause of death, and between place of death and country. Compared to Belgium
children, those in Mexico and New Zealand (OR= 2.18, 95% CI= 1.41-3.59) were more likely to
die at home, whereas children in South Korea (OR= 0.27, 95% CI: 0.18-0.40), Spain (OR=0.45,
95% CI:0.26-0.78) and France (OR=0.52, 95% CI: 0.37-0.73) were significantly less likely to
die at home.
Conclusion/Discussion: Large cross-national variations were found. These variations may
relate to paediatric palliative care accessibility, health infrastructural inequities, healthcare
policies, and differences in cultural values related to place of death in the study countries.This
however, needs further investigation. The patterns in place of death can inform the development
of paediatric palliative care programs internationally.
7 - AN ‘EXCELLENT’ NURSE AND THERAPY LED PAEDIATRIC PALLIATIVE CARE MODEL
DELIVERING HOSPICE AT HOME IN THE UK (TOP 10)
BLEASDALE, Emma | BURTON, Sharon | HENRY, Lisa | HOLDSWORTH, Clair | KRASTINS, Chris
| LYLES, Liz | MARTLAND, Chris | MCKEATING, Catriona
FORGET ME NOT CHILDREN’S HOSPICE
Aims or goal: Paediatric Palliative Care (PPC) in the UK is provided by centrally (government)
funded NHS services often working together in partnership with voluntary hospice care
facilities(1). Across the UK there is no uniform model of hospice care delivery, with different
models of care evolving from local requirements and service availability(1). Community based
PPC, also termed as ‘Hospice at Home’, can ease transition between hospital and home and
improve home based care(2). We describe the development and evaluation of an innovative
model of a Paediatric Nurse and Therapy Led Hospice at Home service in the UK.
Design, methods and approach: A Huddersfield University feasibility study assessed local
paediatric palliative care needs providing overwhelming evidence to support the development
of a Hospice at Home service. The Forget Me Not Children’s Hospice opened in 2011 providing
hospice at home care to children and their families living in the Calderdale and Huddersfield
(Yorkshire). The care team (inclusive of non-medical prescribing nurses) are led by nurse
consultants and lead therapists working alongside sessional doctors and hospice volunteers to
deliver palliative care antenatally, perinatally and throughout childhood. Service development
is continuously driven by regular service evaluation.
Results: In 2015 96% of responding families rated the service provided as ‘Excellent’, and 4%
as ‘Good’. All (100%) of responding families would recommend the hospice service to another
family. Staff attitude was rated as ‘Excellent’. 20% of 93 surveyed professionals responded
(midwives/doctors/nurses/social workers). All (100%) would recommend the hospice service
to families and other professionals. The recent Care Quality Commission (CQC) inspection has
rated care provided as ‘Outstanding’.
Conclusion/Lessons learned: The current services provided by the Forget Me Not nurse and
therapy led hospice at home model are valued by both the families and professionals working
alongside the hospice to provide care to babies, children and young people with life-limiting and
life-threatening illnesses.
8 - TELEMEDICINA LOW COST. UN PROYECTO PILOTO (TOP 10)
NAVARRO-MINGORANCE, Alvaro | MATEO PEREA, Ginés | PEREDA MAS, Arturo | ROMEROGARCIA, Maria | TOVAR-MACHADO, Rocio | ROSIQUE-ANTONELLI, Mirella | TOMAS-GIMENO,
Juan Jose
HOSPITAL UNIVERSITARIO VIRGEN DE LA ARRIXACA
Aims or goal: La telemedicina es una disciplina que cada vez cobra más importancia en
los cuidados paliativos en régimen de hospitalización domiciliaria. No obstante, el precio de
esta tecnología limita su implantación en muchas de las unidades españolas. Se propuso un
ABSTRACTS 47
proyecto piloto a una serie de padres y profesionales para valorar una gráfica de cuidados
que cumplimentaban los padres online y podía ser valorada por los profesionales en todo
momento. Valorar la pertinencia de una comunicación basada en información online en pacientes
ingresados en una Unidad de Hospitalización Domiciliaria Pediátrica a partir de una encuesta
de satisfacción/pertinencia pasada tanto a cuidadores principales de niños ingresados en la
unidad, como a profesionales sanitarios.
Design, methods and approach: Se valoran 180 ítems de una encuesta de pertinencia
pasada a profesionales sanitarios relacionados indirectamente con la Unidad y 108 ítems de
una encuesta de satisfacción a cuidadores principales de niños ingresados.
Results: Cuidadores Principales: 91% de las respuestas valoraron como fácil/muy fácil el
acceso y la comprensión y un 88% valoró como fácil/muy fácil la cumplimentación. A las
preguntas acerca de la utilidad, un 89% contestó útil/muy útil y sólo un 25% respondió que
hubiera preferido otro tipo de gráfica. Respuestas de profesionales: un 84% valoró como fácil/
muy fácil el acceso y la cumplimentación. El lenguaje empleado lo consideró apropiado un
88% de las respuestas. Un 90% valoró como útil/muy útil la herramienta y a la pregunta de si
hubiese preferido otro tipo de gráfica nadie contestó afirmativamente.
Conclusion/Lessons learned: A pesar de que la muestra es pequeña y no existen referencias
previas, con los datos obtenidos se puede pensar que es un sistema de fácil acceso a cuidadores
principales y que facilita el seguimiento de los profesionales implicados, permitiendo una
mejor organización de los cuidados. Debemos aprovechar las facilidades de comunicación que
nos aportan las nuevas tecnologías, aunque no podemos olvidar que siempre se nos puede
presentar un problema de seguridad, por lo que debemos implementar medidas que garanticen
la confidencialidad de los datos.
9 - CARE CONTINUUM: A PEDIATRIC PALLIATIVE CARE INTEGRATIVE MANAGEMENT
IN THE COMMUNITY (TOP 10)
SANCHEZ PLAZAS, Liza | KOMATZ, Kelly C.
DEPARTMENT OF PEDIATRICS, UNIVERSITY OF FLORIDA COLLEGE OF MEDICINE JACKSONVILLE, USA
Aims or goal: 1. Explore the concept of community-based pediatric palliative care (CBPPC).
2. Describe the benefits of integration of a pediatric palliative care (PPC) program, medically
complex clinic and in-patient consult service.
Design, methods and approach: As medicine continues to evolve and advances are made,
numerous children continue to live with chronic medically complex conditions. It is estimated
that approximately 400,000 children in the United States live with a life threatening condition.
Caring for these patients presents challenges for medical staff, the family, and the community.
The concept of CBPPC strives to improve the quality of life of these children and redesign
their care by focusing on in-home care rather than care in the hospital setting. In the city of
Jacksonville, Florida there are several resources available for children with life-threatening
conditions. A PPC program offers services to approximately 170 children in the community at
their homes. Another 280 children benefit from a medical home care provided by the Center
for Medically Complex Children. On average, 100 patients are enrolled in both programs. Both
programs provide 24-hour service 7 days a week from physicians, nurses and a multidisciplinary
team focused on a home-based systems of care.
Results: The dual enrollment these 100 patients have improves their quality of life and helps
their parents feel more comfortable managing their children’s medical condition at home. When
the child needs to be evaluated in the emergency department or hospitalized, both services
work together and communicate important information about the patient and their goals of care.
The ARNP hospital liaison is key to ensure communication between all the service providers.
Conclusion/Lessons learned: The integration of these services decreases the number of
emergency department visits, rates of hospitalization, lengths of stay, and the overall cost of
medical care: all leading to improved quality of life for patients and their families.
10 - EVOLUCIÓN DEL EQUIPO DE TRABAJO DE UNA UNIDAD DE CUIDADOS
PROGRESIVOS EN ARGENTINA: HACIA EL MODELO DE PLANIFICACIÓN CENTRADA
EN LA PERSONA (TOP 10)
URRESTARAZU, Paula | REGUEIRO, Gabriela | URMAN, Gabriela | URMAN, Jorge | GROSMAN,
Arnoldo
HOSPITAL ESPAÑOL DE BUENOS AIRES
Background: La planificación centrada en la persona (PCP) es un proceso que colabora con
el niño y su familia para facilitar el acceso a los apoyos que necesitan para alcanzar la mayor
calidad de vida posible según sus preferencias y valores.
Aims: Describir la evolución en la conformación del equipo de atención de una Unidad de
Cuidados Progresivos en la Argentina que tiene como objetivo principal facilitar la inclusión en
la comunidad de los niños con condiciones limitantes para la vida (grupos 3 y 4) y sus familias
luego de internaciones prolongadas.
Methods: Se analizó retrospectivamente la conformación del equipo de atención entre el
01/06/07 y el 01/06/15. Se analizaron las variables título, años de formación roles y jerarquía
de sus integrantes.
Results: La conformación del equipo ha pasado por tres etapas y estructuras de funcionamiento:
1) Inicio: Centro de weaning prolongado: más anclado al modelo tradicional de cuidado, centrado
en la condición de salud y en la necesidad de apoyos tecnológicos complejos. Estructura:
terapista intensivo, neumonólogo, kinesiólogo respiratorio, enfermería con experiencia en
cuidados críticos. 2) Desarrollo: Modelo del cuidado crónico: centrado en el paciente y su
familia, con énfasis en autocuidado y la educación, plan de cuidado proactivo y centrado en
la prevención. Estructura: pediatra, equipo de rehabilitación, enfermería y profesionales en
formación. 3) Actual: Hacia la PCP: centrado en el desarrollo de planes de futuro familiar
con el foco en la comunidad, con consenso y criterio de realidad e implicando siempre a los
apoyos naturales del niño, procurando el enriquecimiento de la vida familiar y la capacitación en
las competencias necesarias para manejar situaciones cotidianas. Estructura: familia, equipo
interdisciplinario con un profesional de referencia y profesionales en formación.
Conclusion/Discussion: La conformación y estructura del equipo ha evolucionado hacia la
PCP que brinda orientación en un clima familiar y social afectivo positivo en forma temprana.
11 - THE IMPORTANCE OF SIBLING SUPPORT
BICKLEY, Claire
RAINBOW TRUST CHILDREN’S CHARITY
Aims or goal: Rainbow Trust Children’s Charity provides emotional and practical support to
families when their child has a terminal illness. We aim to maintain a sense of normality by
ensuring support is provided not only for the sick child but also for the parents, grandparents
and siblings. The Me Too! Project began in April 2013 piloting two dedicated sibling support
workers working alongside staff in existing family support teams in Manchester and London.
The project was funded through the Big Lottery Fund initially for 2 years, this was extended to
5 years due to its impact
Design, methods and approach: The sibling support worker role is to provide one to one
support, events and activities, group support, therapeutic work and bereavement support to
siblings. The project built networks in each area, working alongside hospice, hospitals and
other agencies to provide a wrap-around support for the children. The siblings support workers
shared skills and knowledge with family support workers throughout the country to upskill the
teams. We assessed a baseline of services available in each area. We surveyed families and
other professionals to identify gaps and the need in support service.
Results: Families felt they were not able to provide enough time to the siblings when the ill
child was in hospital or unwell at home. Siblings felt they needed someone to talk to who would
understand what their family was going through. There were also practical needs such as after
school care, transport to the hospital and understanding their sibling’s illness. Alongside the one
to one support offered to siblings we developed a therapeutic fortnightly after school group and
a monthly bereavement group. We also held quarterly events such as a trip to the aquarium or
museum where the focus was on fun whilst acknowledging why the siblings were there.
Conclusion/Lessons learned: We assessed our outcomes through feedback from siblings,
parents and other professionals. We found that often siblings were less resentful of the ill child
and this gave a more harmonious atmosphere at home. They understood the illness more and
were happy that they had a place to discuss it. For some siblings we were told their teachers
and social workers that attendance and participation in school improved.
Some quotes from the children we work with: “I get excited when I see my Sibling Support
Worker’s car in the driveway as I know she is here just for me” “My mum says I can talk to
you when I get worried about my sister” “I find it really hard sometimes. I don’t get as much
attention from mummy when Jake is in hospital. I like being able to go to the hospital to see her
ABSTRACTS 49
after school” And from the parents: “Collecting Frances from school each day whilst the twins
were in hospital took the stress away from us as a family and enabled both parents to spend as
much time as possible on the neonatal ward.”
12 - PSYCHOMETRIC EVALUATION OF THE TEXAS REVISED INVENTORY OF GRIEF
(TRIG) IN BRAZILIAN PARENTS WHO HAVE LOST A CHILD TO CANCER
BOLDRINI, Erica
HOSPITAL DO CÂNCER INFANTOJUVENIL DE BARRETOS
Aims or goal: Monitoring grief is one of the tasks required during palliative care, yet it is
difficult to measure because no standard approach exists. In Brazil, the only translated and
cross-culturally adapted questionnaire for the assessment of grief is the Texas Revised Inventory
of Grief (TRIG). The objective of this study was to evaluate the psychometric properties of the
TRIG assessment in Brazilian parents who have lost their child to cancer.
Design, methods and approach: We surveyed the parents of children who died from cancer
between the years 2000 and 2010 and who were treated at a single institution in Brazil. The
Hospital Anxiety and Depression Scale (HADS), a scale of symptoms that affect the child’s wellbeing in the last week of life, and the TRIG were used.
Results: Among 250 eligible caregivers, 60 participated during the first mailing and 30 returned
the second questionnaire. The analysis of internal consistency found a Cronbach’s alpha of
0.785 for the first section of the TRIG (TRIG I) and of 0.866 for the second section (TRIG II).
The construct validity of known groups showed no association between grief adjustment and
funeral attendance (p=0.542), standard of health (p=0.318), or disease duration (p=0.184).
The convergent construct validity between the TRIG and the HADS showed a positive correlation.
A simple linear regression showed that the TRIG II had a strong positive correlation with
the TRIG I, the HADS A, and the HADS D and had a negative correlation with the duration
of palliative care. Multiple linear regression identified the TRIG I and HADS D as predictive
factors for present grief. The responsiveness analysis detected no changes over time for the
TRIG I (p=0.437) or the TRIG II (p=0.086). There were no statistically significant associations
between caregivers who presented complicated grief and any characteristics of the caregiver
or patient. Upon analysis of prolonged grief, a statistically significant association was observed
with anxiety and depression.
Conclusion/Lessons learned: The TRIG proved to be reliable and valid for the assessment of
grief resulting from the death of a child from cancer.
13 - BEREAVEMENT SUPPORT FOR CHILDREN IN RURAL ZIMBABWE: WHO CARES?
BOSHA, Mildred Ndamukaneyi
ISLAND HOSPICE AND HEALTHCARE
Aims or goal: To promote positive loss adjustment to bereaved and vulnerable children through
the provision of bereavement support. To help children to identify and express their feelings
and learn to keep memories of their parent/parents. Normalize the grieving process.
Design, methods and approach: Group therapy for orphans and vulnerable children.
Psychosocial support groups for bereaved children through: Assessment of the child’s psychosocial
needs. Develop a plan of action to support these needs Identify and facilitate for provision of
support for the child with regards to their psychosocial needs. The identified psychosocial needs
of the child are met in an age appropriate manner by a Social worker trained in social care skills
for children. Referral to social support networks where the child and their family can access
care beyond that of Island Hospice and Healthcare. Training of community child care workers
and teachers in bereavement support for children in order to promote availability of services
and continuity of care.
Results: Conducive environment for children to openly share their feelings and express
themselves. The support allows the child to behave freely and in a supportive environment They
develop inner strength and ability to deal with a crisis. Bereavement awareness in communities
Availability of support for orphans and vulnerable children in rural areas.
Conclusion/Lessons learned: The needs of orphans go beyond just food, sleep, clothes and
shelter but also the need to express emotions, to cry and to speak.Although many children who
have lost one or both parents are living in the rural areas in Zimbabwe,psychosocial support in
palliative care goes a long way to help them to deal with pain, loss and grief.
14 - THE ROLE OF DRAWINGS TO ENHANCE COMMUNICATION AND ASSESS EMOTIONAL
WELL-BEING IN CHILDREN RECEIVING PEDIATRIC PALLIATIVE CARE
BRITS, Hanneke
UNIVERSITY OF THE FREE STATE, ICPCN
Background: Communication is a cornerstone of palliative care. In children it can be very
challenging, especially when they are ill and from different cultural and language groups.
Drawings are a way to reveal thinking and can reflect emotions difficult to express. In 2014 we
introduced drawings to try and enhance communication and assess emotional status in primary
school children receiving pediatric palliative care (PPC).
Aims: The aim of this study was to evaluate the role of drawings in the assessment of emotional
well-being in children receiving PPC in the South African context.
Methods: Children between the ages of seven and 12 years, admitted for PPC were asked to
draw a human figure according to guidelines of Koppitz. These pictures were assessed with
a standardized emotional indicator scale (EI’s). Pictures were also assessed according to the
criteria set by Skybo et al and focused on the global impression, content analysis, behaviour
during drawing and child’s feedback on the picture. Two people had to interpret each picture and
95% agreeability was accepted. Each picture was discussed with the specific child afterwards
and concerns were addressed.
Results: Twenty children completed at least one human figure drawing (HFD). Nine other
pictures were also assessed. The minority of children draw a child of his/her age or gender, they
mostly drew the doctor. Small figures and the presence of more than two EI’s correlated with
clinical depression.
Conclusion/Discussion: Picture drawing is inexpensive, enjoyable and a tool to assess
emotional well-being. It’s not all play, you must be able to manage the emotions and information
that you get out of the session before you engage in it. Caution must be taken not to just look
at a picture and deduct things from it. The child’s story is more important than the picture itself.
15 - EDDIE AND THE ELEPHANT – DEBRIEFING IN PRACTICE
BRITS, Hanneke
UNIVERSITY OF THE FREE STATE, ICPCN
Aims or goal: Debriefing is a process to elicit facts and feelings after an operation or incident
with the intention to reduce stress and anxiety and learn from the experience. The goal is to
demonstrate the importance of regular debriefing in Paediatric Palliative care (PPC).
Design, methods and approach: A case presentation will be used to demonstrate the process
of debriefing for all involved in the care of Eddie. Eddie was very fond of elephants and we used
the elephant as a role model for debriefing.
Results: Ground rules: Elephants are very structured and follow rules diligently. During initial
group debriefing the ground rules were agreed upon. Team leader: “Among elephants, leadership
is established by the respect gained in showing intelligence and solving problems”. The team
leader was involved in the case for 7 years and had good experience with debriefing. Facts:
Unlike elephants humans can’t remember that well and facts were clarified. Eddie was the
youngest of 6 children. His mother died of HIV when he was 6 years old and his father two years
later. For the past 7 years Eddie was a patient in our PPC programme. He was on home oxygen,
but his condition deteriorated gradually due to structural lung disease, as a complication of
his HIV. Thoughts: Elephants are good listeners and can also use their feet to listen, picking
up rumblings and vibrations in the ground. Listen and watch out for clues as it is difficult to
share emotions. Each person had to use one word to express their emotion, before discussions
followed. Normalization and way forward: Regular small group and individual follow-up sessions
were conducted.
Conclusion/Lessons learned: Debriefing is a process and not a single event. It is an opportunity
for professional as well as personal growth. By following the example from elephants debriefing
can be very rewarding.
ABSTRACTS 51
16 - CUESTIONARIO PARA PADRES DE PACIENTES HOSPITALIZADOS SEGUIDOS POR
UN EQUIPO DE CUIDADOS PALIATIVOS PEDIÁTRICOS
DOUMIC, Lara Penélope | KIMAN, Rut
Background: El trabajo con niños internados derivados a Cuidados Paliativos permite inferir
dificultades en relación a la asimilación de información y adaptación de los padres a la nueva
situación.
Aims: Reconocer sentimientos y/o fantasías en los padres de un niño que padece una enfermedad
amenazante y/o limitante para la vida, a raíz de la situación de vulnerabilidad que conlleva la
hospitalización. Describir aspectos que dificultan y facilitan la capacidad de afrontamiento en
los padres.
Methods: Diseño descriptivo observacional. Se utilizó un cuestionario de 30 preguntas semiestructuradas. Las variables cuantitativas se presentan como medida de tendencia central y
variables categóricas como medidas de frecuencia (porcentajes). Se utilizó Statistical Package
for the Social Sciences (SPSS) version 11.5 (2002).
Results: Se obtuvieron 30 cuestionarios completos de una muestra de 30 padres, sobre un
total de 37 entregados. Correspondieron a una población compuesta por 21 mujeres (70%) y
9 varones (30%), con una mediana de edad de 29 años (18-56), 30% (9/30) con secundaria
completa o estudios terciarios. Los datos obtenidos pertenecen a 21 pacientes menores de 2
años, 90% (17/21) internados en unidades de cuidados intensivos: pediátricos, cardiovascular y
neonatal. 100% de los encuestados manifestó saber lo que tenía su hijo, aunque sólo un 26,6%
(8/30) pudo comprender la información brindada por los médicos. El 63,3% (19/30) evaluó
la comunicación como insatisfactoria. Sin embargo 93,3% (28/30) manifestó confiar en los
profesionales. 53,3% (16/30) expresaron sentimientos de culpa, impotencia, soledad, tristeza,
angustia, dolor y enojo respecto de la situación de enfermedad. 86,6% (26/30) manifestaron
aspectos relacionados con espiritualidad.
Conclusion/Discussion: Se encontraron diferencias significativas entre cuestionarios de
padres de un mismo paciente. Concluimos que las tensiones que se plantean en la comunicación
entre médicos y padres, conlleva a una inacabada comprensión, situaciones de desconfianza,
negación de la trayectoria de enfermedad del paciente y dificultades en la adherencia a los
tratamientos.
17 - GRIEF CONCEPTUALIZATION FOR CHILDREN & FAMILIES
HARRIS, Mekel
THE CHICAGO SCHOOL OF PROFESSIONAL PSYCHOLOGY – LOS ANGELES
Background: The majority of children experience the death of a loved one throughout the
course of their childhood (Harrison & Harrington, 2001). Within the pediatric palliative care
milieu, siblings of children diagnosed with terminal conditions will be faced with the challenge
of grieving the death of their brother/sister. Despite this reality, research suggests that
sibling support is limited, increasing the risk that siblings may experience poor psychosocial
outcomes (Contro, Larson, Scofield, Sourkes, & Cohen, 2002). Given these data, clinicians
must be equipped to engage with children who are grieving, as well as their families. Research
suggests that effective grief intervention has strong potential to offset negative psychosocial
sequelae and improve psychological functioning for grieving children and families (Heath,
Leavy, Hansen, Ryan, Lawrence, & Sonntag, 2008; Perlman, Schwalbe, & Cloitre, 2010). The
current presentation will review the integrated grief therapy for children (IGTC) model, an
evidencebased approach for working with grieving children and families. IGTC’s incorporation
of cognitive-behavioral, family systems, and narrative therapy approaches affords it utility for
this unique population. Throughout the presentation, the presenter will outline the fundamental
assumptions, treatment principles, and phases of treatment within the IGTC model via qualitative
case study methodology. Specifically, the presenter will share results from a 12-month IGTC
intervention with a 14 year-old girl, a sibling of a young pediatric palliative care patient. Results
from the case study will afford participants a working knowledge of the IGTC model, with
detailed emphasis on the assessment, stabilization, and grief work phases of intervention. The
presenter will (a) explore application of the model to clinical practice, (b) denote methodological
limitations, and (c) outline considerations for special populations of children and families who
are grieving. Finally, the presenter will highlight the clinical and research implications of the
IGTC model, particularly as it relates to pediatric palliative care
18 - REAL SUPERVISION FOR PEOPLE WORKING WITH CHILDREN AND FAMILIES:
FROM WORDS TO ACTION
HUNT, Jennifer
SELF EMPLOYED
Aims or goal: To move ‘supervision’ from being a word on a program document towards
effective implementation of supportive skilled support provided to health and care workers to
improve the care of children
Design, methods and approach: A brief overview of the value of supervision, drawn mainly
from psycho social and social work literature will provide the background to this presentation.
The relationship between the concept (included in the majority of palliative care programs as
part fulfilment of care for the carer) and the reality (who receives supervision, by whom and
how often) will be examined using experiences from low-resource settings in Zimbabwe as a
case study. Evolving supervision and mentorship practices from related fields of child care will
be described to assess if lessons can be learned for palliative care.
Results: Recent trends towards embedding effective supervision into social work and psycho
social practice in Zimbabwe suggest a renewed recognition of the value of supportive clinical
supervision in a resource-poor environment to maximise quality of work. The commitment to
regular supervision of some child-focused agencies may pay dividends in staff retention and
satisfaction, and ensure quality of care for patients and families.
Conclusion/Lessons learned: Supervision models from related fields of child care and
support may provide guidelines for how best to implement effective supervision within pediatric
palliative care settings. Rather than justify lack of supervision due to minimal resources, this
presentation suggests that supervision can optimise resources.
19 - HOW LONG IS A PIECE OF STRING? DE GUE TAMANO SE ALCANZA UN PEDAZO DE HILO?
MARTIN, Narelle | HEARN, Sue | CLARK, Sarah | SMITH, Philippa | ARNOTT, Elizabeth | PERRY,
Ann-marie | HO, Gy Wen | CLARKE, Zena
Background: Bear Cottage is the only children’s hospice in NSW and one of only two in Australia.
What matters most at Bear Cottage is that every child and family enjoys their time together
to the fullest and has opportunities to create special memories. As we provide a high level of
clinical care to the child throughout the trajectory of the child’s illness, we find the families,
parents, siblings and grandparents isolated and often the ‘forgotten’ ones.
Aims: No one need ever be alone; Bear Cottage offers an invisible string, reaching out to our
vulnerable families who face the most difficult challenges of their lives. The invisible string can’t
be seen but connects the child and the family with Bear Cottage throughout life, death and
bereavement. Our invisible string of support, underpins our creative and innovative programs.
Through story telling we will share our program designs, our team approach, out outcomes and
what we have learnt.
Methods: Our string encompasses a multidisciplinary approach to care, enabling our family
support team to pull together and provide programs that allow life to be lived once again for
our families. Programs such as in house support camps and health and wellbeing programs
for bereaved and non-bereaved parents. Beyond the walls of the hospice, siblings are given
opportunities to connect. Our ‘Footprints in the Sand’ program brings bereaved families together
by way of family camps, BBQ’s and morning teas. Fun, creativity and facilitating informal
connections underpin our programs.
Results: These programs have resulted in loss of isolation and feelings of being alone, to
friendships and improved health and well-being enabling families to once again laugh and live
life positively. Evaluations have been creative and user friendly to all ages and demographics.
Conclusion/Discussion: This invisible string is also connected to balloons of all colours and
sizes, just like our children. As we watch these balloons drift into the skies we do not see
the empty space left behind, we see the invisible string attached, filled with love and happy
memories for the families. Our string ensures that our families ‘never feel alone’ ( The Invisible
String –Patrice Karst).
ABSTRACTS 53
20 - WALKING ALONGSIDE CHILDREN WITH PROGRESSIVE LIFE SHORTENING ILLNESSES—
EXPERIENCES OF PEDIATRIC ACUTE CARE NURSES: A LITERATURE REVIEW
Background: Children with Progressive Life Shortening Illnesses (PLSIs) are living longer than
previously thought possible, but are frequently in contact with the healthcare system and often
admitted for lengthy stays to general acute care units. While the literature to date suggests
that nurses employed in specialty areas struggle in their work with children with PLSIs, there
is little evidence about nurses who work with children with PLSIs on general acute care units.
Aims: This literature review aimed to explore the experiences of pediatric nurses working with
children with PLSIs.
Methods: Seven electronic databases were searched using key terms related to pediatric nurses
in acute care and children with PLSIs/pediatric palliative care. Peer-reviewed articles published
between 1962 and 2014 were included and incorporated into the narrative synthesis. Following
title and abstract review of 15,724 records, 259 full-text articles were included for full review.
Results: Most articles reviewed focused on nurses working with children with PLSIs in critical
care and oncology. Studies exploring nurses’ experiences suggest that nurses who work in other
acute pediatric settings may struggle with escalating rates of burnout, compassion fatigue,
moral distress, and grief. However, pediatric nurses also experience benefits to their work with
children with PLSIs through meaning making and personal growth.
Conclusion/Discussion: Little is known about the experiences of pediatric nurses caring for
children with PLSIs on general inpatient units. Doctoral research using hermeneutic inquiry
has been completed to develop a deeper understanding of the experiences of pediatric nurses
working with children with PLSIs on general inpatient units.
21 - EL GRUPO DE PADRES COMO RECURSO TERAPÉUTICO Y POTENCIADOR EN LA
CONSTRUCCIÓN DE VÍNCULO ENTRE EQUIPO DE CUIDADOS PALIATIVOS - FAMILIA EN UNA
UNIDAD NEONATOLOGÍA
RUBIO, Andreza | SOUZA, Jussara de Lima | MARINHO, Vanessa Salheb | SANTOS, Laíse Potério
Background: El progreso técnico ha permitido a los recién nacidos con graves y / o incurables
sobreviven y requieren cuidados paliativos que brindan comodidad física, emocional y espiritual
en el curso de sus vidas y sus familias. En este contexto, vínculo y el cuidado de la familia
son de suma importancia, destacandose entre la práctica la psicología en Neonatología la
bienvenida a los padres a través de la escucha, orientación y sensibilización con el medio
ambiente, trabajando con sus ansiedades, fantasías y, sobre todo, el miedo la posibilidad de
pérdida. El grupo de padres se presenta como una propuesta de intervención que ayuda a la
experiencia de hospitalización del niño, no seas traumático y el vínculo entre ellos se construye.
Aims: Describir la experiencia del Grupo de Padres desarrollado el servicio de Neonatología.
Methods: El “Grupo de Padres” se lleva a cabo semanalmente en la Neonatología CAISM /
UNICAMP, con la participación de psicólogos y neonatólogo que proporcionan un espacio en el
que puedan compartir sus experiencias, expresar sus sentimientos y responder a sus preguntas.
Results: De la experiencia de la unidad, se percataron de que la estancia hospitalaria del bebé
es un momento de crisis para los padres y hacer frente a la posibilidad de perder termina
causando desorden. En vista de esto, el grupo proporciona la capacidad de palabra de la
circulación, las dudas, los miedos, la angustia, la culpa, la ansiedad y los sentimientos se
movilizaron este período de riesgo.
Conclusion/Discussion: La actuación del grupo es esencial que los padres tengan un espacio
donde puedan trabajar los sentimientos y emociones que surgen de la admisión de su bebé, así
como reforzar el enlace para facilitar la comunicación con el equipo.
22 - FACEBOOK AND GRIEF: A CASE REPORT
SEOANE, Marcela | BARBOSA, Silvia | SANDY, Natascha | ROMBACH, Sabrina
Background: The loss of a child is one of the most devastating experiences for a parent and
is associated with diverse maladaptive developments. In recent years, social networking via
Orkut, Twitter and Facebook has become increasingly popular as a way to interact with people
virtually and globally. Just as people use Facebook to commemorate life events, people also use
it to memorialize those who have died. Social media is giving people a new way to express grief.
It appears that Facebook allows a continuing space to engage with the deceased in a mediated,
virtual and spiritual space. Thus, it is observed in their personal profiles, that bereaved parents
express their grief and suffering virtually through messages, which are shared and visible to
other users on the network.
Aims: To analyze, through a case report, how bereaved parents use social media to express grief.
Methods: Case Report
Results: A four-year-old boy followed at Children’s Hospital – São Paulo, with Schimke’s immunoosseous dysplasia, a rare autosomal recessive multisystem disorder, witch features include:
short stature associated with spondyloepiphyseal dysplasia (SED), nephrotic syndrome, and
defective cellmediated immunity. We analyzed his mother’s faith and hope during the palliative
phase of his 70-day hospitalization throughout her messages at Facebook. We also observed
how she used social media to grief and communicate her feelings after his death, in posts like
“My little angel, miss you so much...” or “A week without your smile, I wish you could come
back...”
Conclusion/Discussion: These days, Facebook is intertwined with every aspect of life – even
death. Mourning in the past was done in isolation: people often held their emotions in check or
hid their eyes behind dark glasses. Perhaps virtual sites allow for another way for survivors to
heal and move on with their lives.
23 - ASPECTO PSICOSOCIALES DE LA ATENCIÓN INCLUYENDO EL DUELO
SMARIO, Francisca | GARCÍA, Laura | ARTURI, Analia | ALMANZA, Marina | SPINA, Alejandra |
ROSSI BERLUTI, Ana Maria
HOSPITAL MUNICIPAL DEL NIÑO DE SAN JUSTO. LA MATANZA. PROVINCIA DE BUENOS AIRES.
ARGENTINA
Background: Aspecto clínico: niña 7 años, sin antecedentes perinatológicos. Meningoencefalitis
herpética a los 7 meses de vida, secuelar: encefalopatía crónica no evolutiva, hemiparesia
izquierda, síndrome convulsivo, amaurosis, desnutrición, conducta de autoagresión. Múltiples
internaciones: procesos respiratorios, convulsiones, infecciones en piel. Aspecto psicosocial:
madre joven, tabaquista, tatuada, drogas de abuso, abandonó a la niña.Padre ausente.
Cuidadora: abuela materna: > 60 años, primaria incompleta, extrema pobreza, cuida otros nietos.
Red familiar pero ajena a la situación. Aspecto psicológico: abuela con rasgo codependiente,
omnipotente. Dificultad para aceptar alimentación por botón gástrico ( duelo), ya que evidencia
en la misma una involución de una función vital, en detrimento de una mejor calidad de vida.
Aims: Incrementar la calidad de vida abordando el aspecto psicosocial, a fin de evitar la
claudicación de la cuidadora. Consolidar el vinculo abuela-nieta con equipo de salud, para
brindar las herramientas para posibillitar confort, bienestar y alivio de síntomas. Continuar
trabajando en el proceso de aceptación del duelo: pérdida de una función vital cómo es la
alimentación por boca.
Methods: Revisión de historia clínica. Entrevistas por parte del equipo: Trabajadora Social,
Psicóloga, Voluntaria.
Results: Se esta trabajando el contexto familiar. La familia sufre modificaciones por influencia
de su entorno y viceversa. Existe una crisis estructural, la cual hace que persistan las tensiones.
La cuidadora primaria insiste en la alimentación vía oral, no tomando conciencia de la mala
nutrición que conlleva a mayor riesgo de enfermedad. La abuela es responsable del cuidado
de otros nietos, con una sobrecarga biopsicosocial que conduce a la claudicación de la misma.
Conclusion/Discussion: La comunicación paciente - familia, equipo es importante para reducir
incertidumbres, manejar la ansiedad, para la búsqueda compartida de resolución de problemas
a fin de mejorar la calidad de vida, movilizando los propios recursos de su contexto, construyendo
una red familiar.
ABSTRACTS 55
24 - SHARING EXPERTISE AND ORGANISATION SKILLS WITHIN TWO DUTCH ACADEMIC
PEDIATRIC HOSPITALS IMPROVES PROVISION OF PEDIATRIC PALLIATIVE CARE
VAN WALRAVEN, Anne Marie S.M.(1) | BALL, Lynne Margaret(2) | BINDELS-DE HEUS, Karin
G.C.B.(3) | SCHUILING, Meggie(4) | MICHIELS, Erna M.C.(3) | MOLL, Henrietta H.(3)
STICHTING PAL, UTRECHT AND WILLEM ALEXANDER CHILDREN’S HOSPITAL LUMC, LEIDEN,
THE NETHERLANDS (1); WILLEM ALEXANDER CHILDREN’S HOSPITAL, LUMC, LEIDEN, THE
NETHERLANDS (2); ERASMUS SOPHIE CHILDREN’S HOSPITAL, ROTTERDAM, THE NETHERLANDS
(3); STICHTING PAL, UTRECHT, THE NETHERLANDS (4)
Aims or goal: Pediatric palliative care (PPC) in the Netherlands has recently gained momentum.
National guidelines require implementation by individual institutions. We aimed to develop
uniform PPC in two amalgamated Dutch academic pediatric hospitals located in different cities.
Design, methods and approach: A work-group outlined the requirements for PPC and the Dutch
PPC expertise organisation (PAL) developed a funded project. The core group i.e. PAL appointed
project leader (PL), qualified PPC - oncologists and metabolic/ inherited diseases specialists with
subspeciality pediatricians, nurses and multi-disciplinary co-workers participated. Nurse experts
and PL co-ordinated work groups/meetings. The PL established priorities, developed planning,
organised specific sub-groups and inventarisation of shared requirements and guidelines, and
implemented recommendations between centres. Interdisciplinary meetings discussed children
requiring PPC and individual care plan was discussed/formulated. Bi-annual joint meetings
between the two hospital teams facilitated sharing experiences. External training in PPC, funded
by the project was allocated to unit staff increasing awareness of PPC and expertise in each of
the children’s hospitals. Transition of PPC to primary care setting was addressed and common
protocols established, incorporating recent developments in national government requirements
for provision of care-plans for seriously ill children at home.
Results: Comparable PPC was established in both hospitals catering to the requirements of
each centre’s patient population. Sharing expertise significantly reduced the time required to
initiate and develop PPC within a health care region. PL provided an essential co-ordinating role.
Conclusion/Lessons learned: Collaboration between hospitals is possible, leading to uniform
establishment of PPC, guideline facilitation and standardisation of quality-norms, with potential
for future research.
25 - THE NEED TO ADVOCATE FOR CHILDREN’S PALLIATIVE CARE
NKOSI, Busi
ICPCN
Background: There is a great need for CPC however, it still remains inaccessible to many of those
who need it. The reasons for this are varied and include: lack of national policy, lack of trained
professionals, finance and a lack of general awareness by the public or policy makers (C. Knapp
et al). A study that was carried out by ICPCN revealed that the need for generalised palliative
care is 21,2 million children and 8,6 million children for specialized care. Sadly provision is less
than 1% across the world. Most children in need of palliative care are found in Sub-Saharan
Africa and South East Asia.
Approach: Palliative care practitioners should learn various methods of advocating for CPC in
order to identify and make use of every opportunities they come across. They also need to be
well organised and systematic in planning for their projects. Broad aspects of advocacy include
lobbying, campaigning and education. The World Health Organization Resolution 67.19 of 2014
is an important tool to use and all CPC practitioners should have good knowledge of it. Equally
important is to familiarise themselves with the work of the WHO Technical Advisory Group for
implementing the resolution and keep up to date with its developments in order to participate
or influence decisions when their countries become involved.
Conclusion: Advocacy can achieve: An increased awareness of the need for CPC; National
policy development and changes in restrictive regulations e.g. availability of opioids and other
necessary medicines; Increased resources for CPC
26 - INTEGRACIÓN DE CUIDADOS PALIATIVOS EN INTENSIVO
BUSTAMANTE, Linda | RIVAS, Silvia | PAZ, Gabriela | VALVERDE, Patricia
UNIDAD NACIONAL DE ONCOLOGIA PEDIATRICA
Background: Con los avances científicos vividos en los últimos tiempos los servicios de intensivo
han logrado mejorar la sobrevida de los pacientes. Al integrar los Cuidados Paliativos en los
procesos de toma de decisiones se logra ayudar a los intensivista en momentos complejos a
considerar planes de tratamiento enfocados en el bienestar del paciente sin realizar medidas
desproporcionadas según la condición general del paciente.
Aims: Describir el proceso de integración de los Cuidados Paliativos en un servicio de intensivo
oncólogico Pediátrico
Methods: Estudio descriptivo observacional de casos
Results: Descripción de casos de las intervenciones realizadas con las familias juntamente con
los oncólogos e intensivistas en la toma de decisiones de pacientes en intensivo.
Conclusion/Discussion: Se logró por todos los equipos la aceptación de la intervención de
tanto intensivo como cuidados paliativos en el proceso de toma de Decisiones en la limitación
terapéutica en intensivo. Esto ayudaba a todas las partes a aceptar los procesos de cada
paciente y también permitía a las familias integrarse mucho mejor al momento que viven en
intensivo.
27 - IDENTIFYING INDICATORS OF QUALITY PAEDIATRIC PALLIATIVE CARE
DUC, Jacqueline(1) | JOHNSTON, Kelly(2) | RAPOPORT, Adam(2) | SIDEN, Harold(3) | WIDGER,
Kimberley(4)
LADY CILENTO CHILDREN’S HOSPITAL, AUSTRALIA (1); HOSPITAL FOR SICK CHILDREN,
TORONTO, CANADA (2); UNIVERSITY OF BRITISH COLUMBIA, VANCOUVER, CANADA (3);
UNIVERSITY OF TORONTO, CANADA (4)
Background: Pediatric palliative care (PPC) is a relatively new but rapidly expanding specialty
area. No previous research on a systematic identification and validation of quality indicators
specific to PPC has been undertaken, yet it is an essential component integral to the process of
accurately monitoring and assessing the quality of care provided to children with life-threatening
conditions and their families.
Aims: We conducted a systematic review to answer the following questions: 1. What are
the structure, process and outcome indicators of quality palliative care for children with lifethreatening conditions? and, 1. What are the validated tools to measure these indicators>
Methods: We conducted our search using three electronic databases (CINAHL, MEDLINE,
Embase) and a combination of the following key word terms : palliative care, healthcare quality,
and quality assessment / improvement / measurement / metrics or preferred practices. Results
were limited to studies in children, aged 0 - 18 years. Book chapters, theses and conference
abstracts were excluded. Titles and abstracts were reviewed for relevance, followed by full
article review for all retained articles. Two reviewers were involved at each level of review.
Results: After removal of duplicates, 5909 titles and abstracts were screened for relevance.
1322 full articles were reviewed and 232 articles included in the final review. Key indicators
identified for quality pediatric palliative care included : proportion of children suffering from
a variety of symptoms proportion of families with documented discussions of goals of care;
proportion of children dying in their preferred location; availibilty of specialised PPC services
(including bereavement care); and proportion of parents satsified with PPC service provision.
Conclusion/Discussion: There are a number of indicators and associated measures for
assessing the quality of PPC, however further work is required to validate these indcators
and identify additional outcome indicators. Identification of key quality indicators nevertheless
provides a foundation for critical validation work and assessment of the impact of interventions
designed to improve the quality of pediatric palliative care.
28 - THE BELGIAN LIAISON MODEL OF PAEDIATRIC PALLIATIVE CARE: FIRST FINDINGS
OF A RETROSPECTIVE STUDY BASED ON NATIONAL DATABASE (2011-2014)
FRIEDEL, Marie(1) | PR.BRICHARD, Bénédicte(2) | PR.FONTEYNE, Christine(3) | PR.MISSON,
Jean - Paul(4) | PR.RENARD, Marleen(5) | PR.VANDECRUYS, Els(6) | PR.AUJOULAT, Isabelle(1)
INSTITUT DE RECHERCHE SANTÉ ET SOCIÉTÉ, UNIVERSITÉ CATHOLIQUE DE LOUVAIN,
BRUXELLES (1); CLINIQUES UNIVERSITAIRES SAINT-LUC, UNIVERSITÉ CATHOLIQUE
ABSTRACTS 57
DE LOUVAIN, BRUXELLES (2); HOPITAL UNIVERSITAIRE DES ENFANTS REINE FABIOLA,
UNIVERSITÉ LIBRE DE BRUXELLES, BRUXELLES (3); CENTRE HOSPITALIER REGIONAL DE LA
CITADELLE, UNIVERSITE DE LIEGE (4); UNIVERSITAIR ZIEKENHUIS SINT-RAFAEL, KATHOLIEKE
UNIVERSITEIT LEUVEN, LEUVEN (5); UNIVERSITAIR ZIEKENHUIS GHENT (6)
Background: Since the creation of the first PPC team in 1989, currently 5 interdisciplinary
teams are delivering PPC all across Belgium. A Royal Decree issued in 2010 provides the legal
framework that defines the liaison team’s missions in Belgium. Those are funded by the Federal
Ministry of Health (FMH) and the Cancer Plan. The mission is to ensure continuity and quality of
care between hospital and home for children with life-limiting conditions (LLC).
Aims: We aim to describe i) the type of activities that have been delivered by the 5 liaison
teams (LT) since their accreditation in 2010; ii) the characteristics of the children who have
benefitted from these activities.
Methods: We will analyse the quantitative and qualitative data available in a national database
at the FMH. The data have been collected from the 5 LT, through an annual standardised report
since 2011. Interpretation of the results will be discussed with the LT.
Results: More than 700 children from 0 to 21 years of age, with LLC, have been followed
by year by the 5 liaison teams. Among them, less of 45% were suffering of an oncologic
pathology. About 100 children have died on an annual basis during follow-up period. This has
occured at home for half of them.Trends in distribution and evolution of activities and children
characteristics differ between the teams.
Conclusion/Discussion: The results will give insights on Belgian LT activities achieved over
the last 5 years in Belgium, which can lead to improvements in future. Funding: This study is
funded by the Fonds de Soutien Marguerite-Marie Delacroix. Acknowledgments: We are grateful
to Mrs Flore Alix and Dr. Saskia Van den Bogaert from the Cancer Plan at Belgian FMH.
29 - PEDIATRIC PALLIATIVE CARE REFERRAL PRACTICES IN AN ONCOLOGY SETTING:
A RETROSPECTIVE CHART REVIEW
GHOSHAL, Arunangshu | SALINS, Naveen | DEODHAR, Jayita | MUCKADEN, Maryann
Aims or goal: To study pediatric palliative care referral practices in an oncology setting
Design, methods and approach: Study Design: retrospective chart review Setting: OPD and
IPD patients referred for pediatric palliative care Population: Pediatric patients registered with
The Department of Palliative Medicine, TMC and eligible for the study Duration covered: 5 years
[2010-2014] Inclusion Criteria: All pediatric patients <18 years who received palliative care
consultative services between 2010 to 2014 Data Source Data will be obtained from review
of medical charts of patients who had received palliative care consultative services. Variables
The following variables will be abstracted from the records: (1) demographic information (2)
clinical information (3) characteristics of the palliative care assessment (4)Liaison detail and
(5) follow-up information Outcome measures: 1.Demographic and clinical characteristics of
patients who received hospital-based pediatric palliative care (PPC) consultations 2.Reasons
for referral 3.Outcome of consultations 4.Liaison details with other care providers 5.Preferred
place of care Statistical Analysis Using the final compiled master database, descriptive statistics
(proportions, means and SDs, medians, and interquartile ranges as appropriate) will be used
to describe patient characteristics and circumstances at the time of referral. Equivalency of
proportions in contingency tables will be tested using the chi-squared test or Fisher’s exact test
as applicable. Statistical analyses will be performed by using SPSS 20[IBM SPSS Statistics for
Windows, Version 20.0. Armonk, NY: IBM Corp.].
Results: awaited
Conclusion/Lessons learned: Understanding of the referral practices in pediatric palliative care
will help to identify the possible lacunae and will help to formulate a set of criteria based robust
referral system. It will provide an insider look into the demographic and clinical characteristics
of patients who received hospital-based pediatric palliative care (PPC) consultations over the
years. And finally it will bring out the role played by LGP and other care providers in the
outcome of consultations.
30 - DYING IN A TERTIARY CHILDREN´S HOSPITAL (CARE PROTOCOLS)
GONÇALVES, Angelina Maria Freire | GUTIERREZ, Pilar Lecussan | BARBOSA, Silvia Maria de
Macedo | ZOBOLI, Ivete | POLASTRINE, Rita Tiziana Verardo
Aims or goal: Pediatric chronic diseases, severe and long duration determine suffering to
patients, family and professionals involved in their care. Suffering that accompanies the entire
evolution of the disease. Installs with the establishment of the diagnosis, is revived during the
complications and exacerbations and reaches the summit on the death of the patient. This
event is presented as a unique for everyone, even when expected and deserves the attention
of those who participate in the care of patients and their families
Design, methods and approach: Qualitative analysis of the events that followed the death
of two patients with Cystic Fibrosis, admitted to the Nursing Specialties in ICR-FMUSP, from
data recorded of their Medical Records. We intended to identify factors that acted facilitating or
hindering the assistance provided.
Results: The cases described constitute de daily life of the institution and reveal the difficult
issues of management by professionals. These issues lie beyond biological and technological
aspects and require professional communication skills, data organization, decision making,
identification of ethical conflicts and their management, willingness to work in teams. Regarding
ethic conflicts, the analysis of the cases shows that the professionals identify them accurately
but without tackling or management alternatives. Issues related to autonomy of patients/
family, relationship between “benefit/injury”, respect and justice in the allocation of public
resources are not usually included in the discussions held.
Conclusion/Lessons learned: The constitution of the theoretical and practice course known
as Palliative Care can be a way to face these difficulties, since it intends to act incorporating the
clinical resources for better patient care, considering it the main protagonist of these choices.
31 - PPC DEVELOPMENT IN GEORGIA
KIKNADZE, Nino
Aims or goal: The Open Society Georgia Foundation (OSGF) strives to improve PC in Georgia.
From 2013 the OSGF put special emphasis on analyzing the barriers to the provision of effective
PPC and identifying potential solutions. We prepared situational analysis of the PPC in Georgia
and after the results, started to develop PPC services.
Design, methods and approach: Determined: 1. Number of children in Georgia who are in
PC need; 2. Age groups and specific diseases for which is a need of PC; 3. Number of current
practices in relation to children with PC need in Georgia. Both qualitative and quantitative
methods have been used for the research.
Results: The annual number of children with PC needs is 839 per year. (0-18y/o)
Conclusion/Lessons learned: Based on the findings, the OSGF started developing of PPC services
in Georgia. OSGF established NGO “Children’s Hospice” started providing home care services
for children. Research findings, action plan elaborated with and trained personnel created
solid background and eased the communication process with the businesses. In January 2015
Medical Corporation “EVEX” gave us an office for home care for free. Home Care team has
sixteen patients per month. On top of homecare, the Foundation laid the groundwork for setting
up the first Children’s Hospice in Georgia. “EVEX” purchased the land for hospice. Soon after
hearing about the hospice development initiative the President of Georgia expressed the will to
get engaged in process. On top of “EVEX” and President’s office involvement OSGF succeeded
to raise funds from individuals or managing big business. We have donations from individuals
and business sector. On October 10, OSGF, President of Georgia and Corporation “Evex” hosted
the groundbreaking ceremony to celebrate the construction of the first Children’s Hospice in
Georgia.
32 - OCCUPATIONAL THERAPY SCIENTIFIC PRODUCTION IN PEDIATRIC PALLIATIVE
CARE AT THE ANNALS OF THE I OCCUPATIONAL THERAPY IN HOSPITAL CONTEXT
AND PALLIATIVE CARE CONGRESS
KUDO, Aide Mitie(1) | SANTOS, Walkyria(2) | DE CARLO, Marysia(3) | FRIZZO, Heloisa(4) |
FANGEL, Letícia(5) | QUEIROZ, Mônica(6) | PALM, Rosibeth(7)
INSTITUTO DA CRIANÇA DO HOSPITAL DAS CLINICAS DA FACULDADE DE MEDICINA DA
UNIVERSIDADE DE SÃO PAULO (1); GRAAC - UNIVERSIDADE FEDERAL DE SÃO PAULO (2);
FACULDADE DE MEDICINA RIBEIRÃO PRETO USP (3); UNIVERSIDADE FEDERAL DO TRIÂNGULO
ABSTRACTS 59
MINEIRO (4); UNIVERSIDADE DE BRASÍLIA (5); INSTITUTO EMÍLIO RIBAS (6); UNIVERSIDADE
FEDERAL DO PARANÁ (7)
Aims or goal: The Occupational Therapy in Hospital Context and Palliative Care Congress
was realized in 2014, bringing together professionals, researchers, teachers and occupational
therapy students aiming to knowledge enhancement, looking for solutions and evidences for
the development of best practices in occupational therapy in hospital context and palliative
care.
Objectives: To analyze research, education and clinic practice of occupational therapy in
pediatric palliative care, presented at the ATOHosP Congress.
Design, methods and approach: Review the annals of the Congress, looking for studies
in pediatric palliative care, using the keywords “palliative care”, “pediatric palliative care”,
“terminally”, “death”, “end of life”, “grief” and studies in pediatrics using the keywords “pediatrics”,
“infant”, “development”, “games”, “toys”, “playroom”, “newborn”, “ICU neonatology”, described
as key-words or at summary texts.
Results: 119 studies were presented at the Congress, of those 16(13,44%) addressing
palliative care and among them none related to pediatric palliative care and, at the pediatric
field 31(26,05%) were found, however none addressing palliative care.
Conclusion/Lessons learned: The data gathered shows us that beyond the low number
(13,44%) of studies related to palliative care, the absence of the subject pediatric palliative
care at the congress shows us an shortage of professional practice on this field. Within pediatrics
(26,05%) also no study were found related to palliative care, even if the type of the pathology
mentioned require approach related to palliative care. In this sense is eminent to realize thinking
about occupational therapy practices with strategies that incorporate and support the formation,
capacitation of professionals and the organization of pediatric palliative care services.
33 - “A TWENTY YEAR FOOTPATH”. WORKING IN HOSPITAL-BASED CHILDREN
PALLIATIVE CARE
LASCAR, Eulalia | NALLAR, Martín | PICCONE, Samanta | GONZALEZ, Mariana | RODRIGUEZ
GONI, Eugenia
Aims or goal: Share our experience in the implementation, management and updating of a
hospital-based palliative care program in children and adolescents from 1996 to 2016.
Design, methods and approach: The Children’s Hospital, was one of the pioneer at the creation
of a Pediatric Palliative Care Team (PPCT) in Latin America. It ranks fourth in complexity in 2015.
The PPC Programme was approved in 1996, to cover the needs of children and adolescents with
life limited conditions (LLC) and of their families. The Unit receives patients from all the country
and from neighboring countries. PPCT develops activities responding to holistic needs from
diagnosis through advance care and bereavement: • Assessment of needs and application of
different models of care. • Evaluation, measurement and treatment (pharmacological and nonpharmacological) of disturbing symptoms in patients with LLC. • Emotional support to children
and families (including siblings and extended families), across the disease, the advance phase
and bereavement. • Monthly Team Emotional Support and Reflexion Meetings. The PPCT is an
interdisciplinary group with expertise in pediatric palliative care.
Results: Support: Exponential increase in enquiries 150 1st. Time enquiries (52 in 1996)
83% non-oncological cases (50% in 1996) 4030 enquiries (418 in 1996) 273 Phone enquiries
Frequent pain-related consultations Drugs mostly used: non steroids and morphine (39%
patients receiving opioids) More oral route against intravenous route 14% increment in non
pharmacological techniques Death at Hospital 75% Education • Postgrade and Interdisciplinary
Annual PPC Course. • Bi-annual on line Course for health care providers.
Conclusion/Lessons learned: PPCT prioritized patient’s needs over scarce resources Enquiries
increased markedly. Cancer / non-cancer pathology ratio decreased. Increased consumption of
opioid analgesics. Absence of specialized nursing in Argentina A formal PPC continuing education
programme established seven years ago. Advantage of interdisciplinary team and improvement
in care quality.
34 - BENEFITS OF USING MIRRORING IN A PEDIATRIC PALLIATIVE CARE TEAM
LINDSTRÖM, Christina
LILLA ERSTAGÅRDEN CHILDRENS HOSPICE SWEDEN
Aims or goal: As part of the patient safety training for team managers, one task was to
implement a new project at one’s own workplace. I decided to test Mirroring.
Design, methods and approach: Description Mirroring is a leading conversationwhere
everyone who has worked in the team during the day gathers in the parlor. It gives everyone
a moment to tell you about the day. It is important not to interrupt and that one can bring up
what each one feel is important. The interviewer keeps an eye on the time so that everyone
gets equal time to talk. Each one cantalk freely, but if that is difficult, the support questions
can be helpful: What has been good?What has been less good? What could have been done
differently? Did the right person do the right things and did any risks occur?PurposeThe purpose
is to give staff a chance to collect the impressions of the day before going home,and to as far
as possible, release what they have been through during the day. A further aim of the Mirroring
is to create a team spirit in the group and a good interaction that creates a safer working
environment. Method In this project I have been using the PDSA wheel
Results: Results It has been interesting to implement this project. It seems that most of the
staff values this kind of conversation as positive. It is important to react on thoughts and ideas
that come up and that action are taken. It is an easy way to report patient safety risks. In the
long term, the aim is to use Mirroring to measure deviations, get a better climate in the working
group and improve the patient safety. Mirroring may provide safer care for patients and staff.
Conclusion/Lessons learned: Mirroring gives a chans to reflect over the work for staff
working at a hopice for Children.
35 - “THE HILDE UMDASCH HAUS” FIRST PALLIATIVE CARE UNIT FOR CHILDREN AND
YOUNG ADULTS IN AUSTRIA A NEW CONCEPT OF CARE
LOTTERSBERGER, Christopher(1) | LOTTERSBERGER, Natalie(2)
L-M ARCHITECTS (1); MALTESER CARE-RING / MALTESER KINDERHILFE GMBH (2)
Aims or goal: This new concept of care is offering flexible help for children, young adults and
their relatives regarding daily, weekly, monthly or long term care and hospice places to increase
life quality for families and focusses on equal opportunities for parents. The architecture extends
nature into the building and gives spacious views as well as privacy. An interconfessional
seperate meditation room provides spiritual moments.
Design, methods and approach: The project was managed by a case management company
for home care (Malteser -Care-Ring) which started family orientated support in Vienna and lower
Austria. The approach was dominated by bottum up action research to increase social capital
within families of palliative children. The design of the project is accorded by the Austrian health
and social government though the house itself was donated and sponsored by Hilde Umdasch
an Austrian entrepreneur.
Results: Within 9 month the house was built in Amstetten 3300 Austria and a team of 21
professionals was identified. Nurses with different qualifications, teachers and social workers
were employed and started to work in the first days of October 2015. A house mother is also
integrated who has no medical education to look after the well being of staff, parents and
siblings, garden, animals and atmosphere to manage life quality within the house. Meanwhile 7
palliative children and young adults moved into the wonderful building. The service is for free.
Conclusion/Lessons learned: The interdisciplinary work between a) home care, b)case
management, c) palliatice care and d) education is taking place. The community of Amstetten
is integrated in the daily routine and political involvement is given for refinancing the care.
Parents are being relieved and are offered a supporting programm which is as flexible as their
needs. The foundation is developing an excellent example for common economics. Instead of
a clinical character the house offers a normal,comfortable feeling, where life is possible even if
children suffer from life - threatening conditions.
ABSTRACTS 61
36 - DEVELOPMENT AND ORGANISATION OF PAEDIATRIC PALLIATIVE CARE SERVICE
O’SULLIVAN, Helen | HOLTRUP, Melanie
ROYAL BROMPTON & HAREFIELD NHS FOUNDATION TRUST
Aims or goal: To establish a Paediatric Palliative Care Service at The Royal Brompton, with
24/7 access to information and contacts in order to support healthcare workers, patients and
their families which is essential in providing holistic care and improving patient and family
experience.
Design, methods and approach: Benchmarking local Paediatric Palliative Care (PPC)
services and guidelines to gather information and develop professional relationships. Email
communication to the Paediatric Multi-Disciplinary Team (MDT) to create awareness of this
Quality Improvement Project and request members to join a MDT in PPC who will work together
to establish the requirements and provision of the service. This project is in its early stages
and therefore the following have not yet taken place. Using guided discussion at first PCC MDT
meeting to ensure all members have the same focus and that dissemination about the service
is clear and consistent throughout the MDT. Development of audit questionnaires that are
appropriate for both the MDT and the patient/families. Circulation of audit questionnaires at
the start and end of the project to evaluate the PPC service. Using information gathered from
services and guidelines, set up an intranet page with access to summaries, guidelines and links
to services. Providing study sessions to educate staff on PPC and the service we now offer.
Results: Whilst this project is still in progress, we hope to establish an evidence-based service
that staff can access at any time to assist in providing educational support and guidance to
families and children with PPC needs. The current PPC team consists of doctors, nurses, play
specialists, psychology, chaplain and family liaison. We also hope to have occupational therapists
and physiotherapists join.
Conclusion/Lessons learned: We hope to have an established Paediatric Palliative Care
Service that continues to educate and provide support to staff, patients and families.
37 - IMPROVING OUTCOMES AND MITIGATING PATIENT, FAMILY AND CAREGIVER
DISTRESS: APPLICATION OF MEDICAL ERROR REDUCTION THEORY TO PEDIATRIC
PALLIATIVE CARE
OKHUYSEN-CAWLEY, Regina
BAYLOR COLLEGE OF MEDICINE
Background: The care of seriously ill and dying children is extremely challenging given the
complexity of medical issues encountered and the delicate nature of interactions with each
child and family. Errors during palliative care (PC) may lead to significant consequences,
including inadequate symptom control in the patient, and avoidable suffering with complicated
bereavement in family members. In clinicians, regret may contribute to the “Second Victim”
phenomenon of burnout and attrition.
Aims: Medical error reduction framework strategies originating in high-reliability organizations
have been successfully integrated into clinical subspecialties. We investigated whether this has
extended into PC.
Methods: A literature search was performed utilizing the PubMed search engine, incorporating
terms potentially relevant to error reduction in PC and published in the English language.
Results: An emerging body of literature, primarily authored by Isabel Dietz el al suggests an
increasing awareness in regards to clinician error, which professionals recognize as having a
significant negative impact on outcomes. Errors in communication and symptom assessment
may negatively impact quality of life, symptom control, and life expectancy. They most likely
also contribute to distress and regret in surviving family members and healthcare providers.
Conclusion/Discussion: Medical error reduction frameworks as suggested by Croskerry,
Leape and others may be eminently applicable to pediatric palliative care. Interdisciplinary
curriculum development, training in enhanced communication techniques, and institutional
quality improvement initiatives that promote state-of-the-art knowledge in PC assessment
and management skills may improve outcomes for children with life-limiting conditions, their
families, and those who care for them.
38 - COMPARISION BETWEEN TWO PEDIATRIC PALLIAITVE CARE SERVICES IN
BRAZIL
BARBOSA, Silvia Maria de Macedo(1) | POLASTRINI, Rita Tiziana Verardo(1) | ZOBOLI, Ivete(1)
| AMARAL, Tatiana Mattos(2) | VIEIRA FILHO, Joaquim Pinheiro(1) | MARÇOLA, Ligia(1)
UNIVERSIDADE DE SÃO PAULO (1); HOSPITAL DAS CLINICAS UNIVERSIDADE FEDERAL DE
MINAS GERAIS (2)
Aims or goal: The aim of this work is to compare two Pediatrics palliative care services and
see the similarities and diferences
Design, methods and approach: On the same day a cross-section was performed in the
pediatric hospitalizations in two national reference university services where the location of
admission to ICU or ward was researched to know if the patient had a diagnosis belonging to
a list of pediatric palliative diagnosis. It was also asked if the research participant would be
surprised in case the patient died in that hospitalization or within a year, and if there was a
transplant indication for patients.
Results: In both services were found 94 children with palliative conditions, and 10 were in
intensive therapy wards and 84. In 70 hospitalizations (74%) researchers would not be surprised
if death occurred within one year and in 64 patients (68 %) researchers would not be surprised
if death occurred in that hospitalization.
Conclusion/Lessons learned: In recent years an increase in the prevalence of incurable and
disabling diseases has been observed. Medical and technological advances have contributed to
a decrease in infant mortality rates and an increase in survival rates of children and adolescents
with severe and life-threatening diseases that require palliative care. Only a minority of children
with incurable diseases have benefited from palliative care services. The need for pediatric
palliative care is an emerging problem in our society and current solutions are inadequate.
39 - EPIDERMOLYSIS BULLOSA: THE NURSING CARE AND QUALITY OF LIFE.
POLASTRINI, Rita Tiziana Verardo | BARBOSA, Silvia Maria de Macedo | VIEIRA FILHO, Joaquim
Pinheiro | ZOBOLI, Ivete | MARÇOLA, Ligia
Background: The Epidermolysis Bullosa (EB) is a heterogeneous group of genetic disorders
characterized by blistering of the mucocutaneous region after minor trauma as a result of
epithelial fragility. It is an incurable disease that depends on a specialized service and focused on
prevention of complications. The monitoring of these children and adolescents is multidisciplinary
and interdisciplinary. Nursing plays a fundamental role in the care and promotion of health of
the child with EB.
Aims: The aims at describing nursing actions in the care of children with Epidermolysis Bullosa
(EB) and their families.
Methods: This work is a descriptive-exploratory and aims at describing nursing actions in the
care of children with Epidermolysis Bullosa (EB) and their families.
Results: Family participation in the decision-making process for each care provided makes it
possible to find the best way for children with EB, performing a planning and executing the
appropriate form of assistance with rational use of existing resources in health facilities and
community. We believe that recognizing the psycho-emotional and social needs of the family
helps us understand behaviors and attitudes, in addition to providing better quality in nursing
care. The orientation and care facilitated coping with the disease and consequently there was
some improvement in the quality of life of these patients attended at pediatric palliative care
ambulatory.
Conclusion/Discussion: The implementation of these services have reflected with improvement
in the quality of life of children and their families, with a higher treatment compliance, providing
and establishing daily routines, such as, going to school and play. The work also involves
information to the community living with this reality, contributing to the well beng and better
integration of patients with Epidermolysis Bollosa.
ABSTRACTS 63
40 - DEFUNCIÓN EN EL DOMICILIO Y NECROPSIA HOSPITALARIA
PORRAS CANTARERO, Jose Antonio | NAVARRO VILARRUBÍ, Sergi | ROLLAN SERRANO, Eva
Maria | CIPRES ROIG, Silvia | PEREZ DOMINGUEZ, Alumdena | VELEZ DELGADO, Veronica |
PALOMARES, Delgado | GARCIA GARCIA, Juan Jose
HOSPITAL SANT JOAN DE DÉU
Background: Es importante para los niños con enfermedades terminales y sus familias que
puedan decidir dónde quieren vivir los últimos días de su vida. En algunos casos, la realización
de necropsia puede aportar información relevante sobre la enfermedad. Con el objetivo de
respetar y facilitar la realización de necropsias en pacientes fallecidos en su domicilio, el equipo
de cuidados paliativos pediátricos hemos realizado un protocolo para establecer un circuito de
atención en estos casos.
Aims: Estudiar los resultados tras la implementación del protocolo de realización de necropsias
de pacientes fallecidos en el domicilio en los últimos 2 años (2014-2015).
Methods: Análisis descriptivo y observacional de las necropsias realizadas de pacientes fallecidos
en su domicilio.
Results: En nuestra unidad, se han atendido un total de 142 niños durante estos dos años.
Han fallecido 82, de los cuales, 44 niños (53.6%) han fallecido en el domicilio. Desde que se ha
implementado el protocolo, se han realizado un total de 9 necropsias de pacientes fallecidos en
su domicilio. El sexo de los pacientes era: 6 niñas (67%) y 3 niños (33%). La edad media de
los pacientes fallecidos era de 11.4 años. La causa de fallecimiento de los pacientes es 5 por
enfermedades oncológicas (55%) y 4 por enfermedades neurológicas (45%). Siete pacientes
eran de la provincia de Barcelona (77.7%) y 2 de Girona (23%). La distancia media entre el
hospital y el domicilio ha sido de 35.72 km.
Conclusion/Discussion: La realización de necropsias no se restringe solo para pacientes que
mueren en el hospital. Creemos que es importante conocer la existencia de dicho protocolo
para favorecer el cumplimiento de los deseos y del niño en los últimos momentos de su vida.
Presentación del protocolo.
41 - ¿CUALES SON LOS MOTIVOS DE DERIVACIÓN DE LOS NIÑOS CON PATOLOGÍA
ONCOHEMOTOLOGICA A UNA UNIDAD DE CUIDADOS PALIATIVOS PEDIÁTRICOS?
PORRAS CANTARERO, Jose Antonio(1) | ROLLAN SERRANO, Eva Maria(2) | NAVARRO
VILLARRUBI, Sergi(2) | PEREZ DOMINGUEZ, Almudena(2) | CIPRÉS ROIG, Silvia(2) | VÉLEZ
DELGADO, Veronica(1) | FERNANDEZ MORELL, Ester(2) | GARCIA GARCIA, Juan Jose(2)
HOSPITAL SANT JOAN DE DÉU (1); HOSPITAL SANT JOAN DE DÉU (2)
Background: Los pacientes oncológicos constituyen un grupo importante dentro de una
unidad de cuidados paliativos pediátricos. Es importante conocer los motivos de derivación
para establecer un plan terapéutico acorde al momento de la enfermedad del niño y poder
establecer una relación de confianza con el niño y su familia antes de llegar a la fase final.
Por dicho motivo, el estudio de los tumores más frecuentes es necesario para posteriormente
describir los factores de mal pronóstico de dichos tumores.
Aims: Describir los tumores más prevalentes en una unidad de cuidados paliativos y los factores
de mal pronóstico de los pacientes pediátricos con enfermedades oncológicas
Methods: Análisis retrospectivo, descriptivo y observacional de los tumores más prevalentes
en pacientes pediátricos oncológicos en nuestra unidad en los últimos 5 años. Posteriormente,
mediante una búsqueda bibliográfica se realizará un listado de los factores de mal pronóstico
más importantes.
Results: En nuestra unidad se han atendido un total de 254 niños durante estos cinco años.
Han fallecido un total de 198 niños (77.9%). Del total de niños, 125 tenían patología oncológica
(49.21%). En cuanto al sexo, 68 eran niños (56 %) y 56 niñas (44%). La edad media es
6.63 años. En cuanto al diagnostico: tumores SNC 51, neuroblastoma 24, tumores oseos 18,
sarcomas 11, tumores de wilms 3, linfomas 6 y leucemias 6, otros 7 (melanoma 3, tumor seno
endodérmico 1 y adenocarcinoma de colón 1, hepatoblastoma 2). Pendiente de la finalización
de la búsqueda bibliográfica.
Conclusion/Discussion: Es importante conocer la prevalencia de los tumores más frecuentes y
establecer criterios de derivación conjunta entre oncólogos y paliativistas. Trabajo interdisciplinar
para proporcionar los mejores cuidados al niño y su familia.
42 - DEVELOPMENT OF A NEW CHILDREN’S HOSPICE: DESIGN FOR HEALING SPACES.
ROBERTSON, Marli(1) | DASILVA-CURIEL, Kathryn(2)
UNIVERSITY OF CALGARY (1); ALBERTA CHILDREN’S HOSPITAL (2)
Aims or goal: A children’s hospice requires different design features compared with an adult
hospice. A purpose-built 10 bed pediatric hospice was built on the grounds of Alberta Children’s
Hospital with the design of the building and the choice of the interior fittings informed by
research on “healing spaces” as well as input from children and families.
Design, methods and approach: Good environmental design in health care facilities may
have an important impact on well-being and healing. Research suggests that healthcare
environments will support coping with stress if the design is oriented to: fostering a sense
of control, access to privacy, social support, access to and views of nature and other positive
distractions.
Results: Pediatric palliative care may often be provided over months to years, integrated with
other care aimed at prolongation of life or cure. Providing respite to families is a key element
of palliative care for children. Respite at the Hospice supports family resiliency and can be
provided to the child alone or the child and family, including siblings. For this reason, Rotary/
Flames House was designed like a 2 storey home with the bedrooms upstairs (including 2
family suites) and half of the total area designated to the downstairs living /recreational area.
It was designed and equipped to facilitate opportunities for children to play and children and
families to socialize, including: recreation, play and therapeutic arts in a large, well–equipped
rumpus room; a multi-sensory room;dedicated spaces for teens; a family video/game room;and
informal family to family support in warm, comfortable spaces like the open plan communal
kitchen-dining area.
Conclusion/Lessons learned: The carefully designed physical environment of the purposebuilt facility has enabled the delivery of innovative and comprehensive service delivery for
children with life-threatening conditions and their families in an environment that contributes
to physical and emotional well-being.
43 - “ANÁLISIS DE LA MORTALIDAD EN PACIENTES CON CÁNCER AVANZADO
INTERNADOS EN HOSPITAL DE ALTA COMPLEJIDAD” LA ATENCIÓN DE PACIENTES
CON CÁNCER AVANZADO TIENE UNA COMPLEJIDAD CRECIENTE, POR LAS MÚLTIPLES
OPCIONES DE TRATAMIENTO, LAS EXPECTATIVAS QUE ESTOS GENERAN, COMO ASI
TAMBIÉN EL AUMENTO DE LOS SÍNTOMAS EN EL FINAL DE LA VIDA
SASSI PRESTI, Maria Silvina | VERNA, Rodolfo | MANSILLA, Natalin
HOSPITAL DE PEDIATRÍA DR. JUAN P. GARRAHAN
Aims or goal: EL PRESENTE TRABAJO PROPONE DESCRIBIR LAS CARACTERÍSTICAS
TRATAMIENTO EN PACIENTES CON CÁNCER AVANZADO FALLECIDOS EN EL HOSPITAL
GARRAHAN DE ENERO 2013 A AGOSTO 2015
Design, methods and approach: Estudio descriptivo, retrospectivo, observacional, de corte
transversal. los datos fueron recolectados de historia clínica informatizada.
Results: 95 pacientes presentaron cáncer avanzado durante el período descripto. De ellos, 59
fueron de sexo masculino, edad promedio al fallecer fue de 9 años, el promedio de estadía de
la ultima internacion fue de 7 días. 79 pacientes fallecieron en sala. Los diagnósticos: leucemias
y linfomas (n=29), SNC (26), sólidos (31) y otros (9). 71 pacientes fueron evaluados por
Cuidados Paliativos. 37 pacientes recibió quimioterapia paliativa, 8 Radioterapia paliativa, 12
estuvieron en la Unidad de Cuidados Intensivos y 26 recibieron transfusiones durante el ultimo
mes de vida. En cuanto a los síntomas y tratamientos durante las ultimas 48 hs de vida:( n=95)
63 pacientes presentaron sintomas respiratorios, 40 neurologicos y 37 dolor. 39 pacientes
recibieron sedación, 84 pacientes opiodes y 71 oxigeno, 40 pacientes recibieron antibioticos.
Conclusion/Lessons learned: El tiempo de estadía fue corto lo que indirectamente nos
mostraría un adecuado control de síntomas. La mayoría de los pacientes fallecio en sala lo que
implicaría un adecuado proceso de toma de decisiones. Los síntomas predominantes fueron:
respiratorios y dolor. Es elevada la utilización de opiodes. Gran porcentaje de pacientes requirió
sedación. Casi el 40% recibió quimioterapia “paliativa” coincidiendo con la bibliografía que
muestra que el final de la vida sigue siendo un periodo activo que incluye múltiples terapias.
ABSTRACTS 65
44 - DENTAL CARE PROTOCOL FOR PATIENTS WITH EPIDERMOLYSIS BULLOSA IN A
TERTIARY HOSPITAL
VILAS BOAS, Patrícia Domingues(1) | JALES, Sumatra Melo Da Costa Pereira(1) | BARBOSA,
Silvia Maria de Macedo(2) | POLASTRINI, Rita Tiziana Verardo(2) | SOARES JUNIOR, Luiz
Alberto Valente(3)
SCIENTIFIC TECHNICAL CENTER IN PALLIATIVE CARE, HOSPITAL DAS CLÍNICAS, UNIVERSITY
OF SÃO PAULO (1); DEPARTMENT OF PEDIATRICS, CLINICS HOSPITAL, UNIVERSITY OF SÃO
PAULO, SÃO PAULO, BRAZIL (2); DIVISION OF DENTISTRY, CENTRAL INSTITUTE - HOSPITAL
DAS CLÍNICAS, UNIVERSITY OF SÃO PAULO (3)
Aims or goal: To describe the dental care protocol for patients with epidermolysis bullosa
(EB), which is one of the accompanying pathologies of pediatric palliative care, assisted by a
multidisciplinary team at a university public hospital of high complexity.
Design, methods and approach: To describe an oral care protocol for children and adolescents
with EB in palliative care in accordance with the complexity and patient’s needs.
Results: The dental approach should be as early as possible and is integrated into individualized
care plan for each patient. The main goal of oral care is to maintain good oral health through
individualized preventive programs focusing in oral hygiene, diet advice and close follow-up
even in patients with milder oral involvement. Must contemplate the interdisciplinary action
and the decrease of pain episodes, with less bullae formation during manipulation. The dental
care protocol prioritizes the main complaint, removal odontogenic infections, relief of pain and
oral rehabilitation. All patients receive diet guidelines, hydration and oral hygiene, and then
receive elective dental procedures. Used always the most atraumatic technique possible with
the lubrication of instruments that come with contact with mucosas and the patient’s skin. The
frequency returns periodically occurs according to the needs of patients.
Conclusion/Lessons learned: Epidermolysis bullosa affects, besides the skin, oral mucosas
and teeth, and the features and oral involvement vary according to the type and subtype of
disease. Dental treatment is still a challenge, but when performed by experienced professionals
and judiciously, contributes to improved chewing, speech and aesthetics, and gives the patient
the improvement of oral health and quality of life.
45 - CAN A FUNDRAISING CAMPAIGN IMPROVE PUBLIC UNDERSTANDING OF
CHILDREN’S PALLIATIVE CARE?
WELLS James M | BOUGH Gary
EMMS INTERNATIONAL
Aims & Objectives: EMMS International (EMMS) ran a fundraising appeal over Christmas
2014 for palliative care in Malawi. Messages focused on children and on raising essential funds.
The appeal raised more than £1M and the associated communications were viewed over 2
million times. EMMS International also wanted to assess whether the appeal also raised public
understanding of palliative care, and whether personal stories motivated people to support the
appeal.
Method: An online survey was used. An email inviting participants was issued to people who
had given a gift to the Sunday’s Child appeal. 305 invitations were issued with a response rate
of 3.3%. The survey took place in July 2015.
Results: How much Understanding of palliative care did you have before the appeal?
80% knew what palliative care was: 10% little knowledge; 10% detailed knowledge
What Stories that most engaged the target audience? 70% Tadala (a two year old girl with
cancer) 10% Cynthia (a young woman highlighted in a related Sunday Herald feature article);
20% Brenda (a grand mother who was carer for her grandchildren, now care for by her young
grandson)
What motivated you to give to the appeal? “My concern for children having no or limited access
to medical help and pain relief.” “We have so much that we don’t realise that in some countries,
what we take for granted, is almost unheard of - that makes you want to help.”
Most effective way of sharing the story: A doctor from Malawi explaining it. Videos
Factors influencing your decision to give:
Children would benefit (65%) I wanted to help people (65%) Preventing pain (65%) Gift was
being matched (55%).
Had you previously supported palliative care? 100% yes, but only 20% had supported
international work.
Would you support this kind of work again? 35% yes 65% perhaps.
Following the appeal, did you try to find out more about Palliative Care? Yes - 37.5%.
Lessons Learned:
A fundraising appeal can raise funds (>£1million) and public awareness (>2million opportunities to view);
1. People in the UK are more likely to support children;
2. People give to people, not projects or concepts;
3. Pain relief is a motivation that needs further exploration and creative ways of sharing this.
4. Match funding is an amazing motivation.
5. 35% would support again, and remainder were warm – there is an underlying sympathy
towards palliative care and its important to build on the case for support with the public.
6. People are motivated to support Children’s palliative care, but the palliative care community
need to be better at telling empathetic stories about people who need/receive palliative care.
7. Further research is required to further investigate the effectiveness of fundraising campaigns
in raising public awareness and understanding of palliative care, and children’s palliative
care in particular.
DAY 2 - FRIDAY 20 MAY
DÍA 2 - VIERNES 20 DE MAYO
46 - USO DE OPIOIDES EN UN SERVICIO DE CUIDADOS PALIATIVOS PEDIÁTRICOS
(TOP 10)
GONZÁLEZ, Mariana | PICCONE, Samanta | NALLAR, Martín | BLANCO, Florencia | LASCAR,
Eulalia
Background: Según OMS queda en desuso la “escalera analgésica de tres peldaños”. Codeína
plantea problemas de seguridad y eficacia. Tramadol requiere más datos sobre eficacia y
seguridad. Se recomienda Morfina como opioide potente de primera elección en dolor moderado
a intenso.
Aims: Evaluar utilización de opioides en un Servicio de Cuidados Paliativos de un Hospital
Pediátrico de cuarta complejidad.
Methods: Trabajo retrospectivo. Revisión de historias clínicas y estadísticas de pacientes en
seguimiento durante 2014 (253 pacientes). Se comparó el tratamiento analgésico según edad y
patología, oncológica o no oncológica. Se diferenció la utilización de opioides en analgosedación
en UCIP.
Results: 57% del total recibe analgesia con opioides. 35% sin opioide, 8% sin registro. El opioide
más utilizado fue Morfina en 24% de los pacientes (43% de aquellos que reciben opioides).
8.6% de los pacientes recibe metadona, sólo 3.5% como analgésico, siendo mayor su uso en
analgosedación en Cuidados Intensivos. 6% reciben Codeína, todos pacientes no oncológicos.
15% recibe tramadol, 74% con patología no oncológica. Pacientes con Encefalopatía Crónica,
patología no oncológica más prevalente, 46% no reciben opioides, 16% recibe morfina, 22%
codeína, 4% metadona. Pacientes oncológicos con opioides, 63% recibe morfina, 26% tramadol
y 5% metadona. Pacientes de primera vez (95 pacientes): falta registro en 23%, 23% sin
opioides, 21% recibe morfina, 4% fentanilo, 2% codeina, 23% tramadol y 3% metadona.
Conclusion/Discussion: Actualmente se replantea la analgesia escalonada en 3 pasos,
surgiendo el desafío es una estrategia analgésica bifásica. Es necesario mejorar el registro de
datos, particularmente en la primera consulta. Queremos destacar el uso frecuente opioides
débiles, principalmente tramadol, incluso en niños pequeños, desde la recomendación sobre
riesgos de codeína, pese a recomendación de OMS. La metadona es utilizada de forma menos
frecuente como analgésico, su uso principal es el descenso de analgosedación en Unidades de
Cuidados Intensivos.
ABSTRACTS 67
47 - CHILDREN WITH HIV INFECTION VERSUS ANTI-RETROVIRAL TREATMENT (ART)
(TOP 10)
MANG’ANDA, Beatrice
PALLIATIVE CARE SUPPORT TRUST MALAWI
Aims or goal: To explore reasons why children with HIV infection taking Anti-retro viral do not
comply with treatment
Design, methods and approach: Data obtained during counselling process at palliative care
unit. The children are referred for counselling on importance of drug compliance. Fifteen HIV
positive children aged from 8 to 15 of both sex admitted in different wards of Queen Elizabeth
Central Hospital (QECH) for various Aids related conditions from July 2013 to June 2014.
Results: Eleven children out of fifteen were orphans; lost both parents their caregivers were
grandmothers. Four children lost one parent each (father) and their biological mothers were
primary care givers who were also HIV reactive and taking ART. Nine revealed managing ART
drugs alone without being supervised. One child revealed attending ART clinic on his own, his
mother goes out in the morning for business and comes very late as such he was missing some
doses because there was no one to remind him. Five children revealed taking drugs on daily
basis but forget to adhere to time of taking drugs and their care givers monitor them through
their verbal reports. “My care giver chose for me to take drug at 6am and 6pm; because we
don’t have a watch in the home I am not sure that I take the drug on time. I sometimes tell my
care giver that I have taken the drug or not and she is comfortable with me”
Conclusion/Lessons learned: Children with HIV infection take the responsibility of ART drugs
on their own without being supervised or monitored as such they do not adhere to the drugs.
Because of poor drug adherence the children develop Aids symptoms that lead to frequent
hospitalization. Care givers do not show commitment of support.
48 - AN EVALUATION OF PAIN BY CHART DOCUMENTATION AND PARENT REPORT
AMONG CHILDREN WITH PROGRESSIVE, NON-CURABLE CONDITIONS (TOP 10)
POSTIER, Andrea(1) | FRIEDRICHSDORF, Stefan(1) | HAMRE, Karen(1) | ANDREWS, Gail(2) |
STEELE, Rose(3) | SIDEN, Harold(2)
CHILDREN’S HOSPITALS & CLINICS OF MINNESOTA (1); UNIVERSITY OF BRITISH COLUMBIA
(2); YORK UNIVERSITY SCHOOL OF NURSING, TORONTO (3)
Background: Children with progressive, non-curable conditions (PNC) require specialized care
to enhance their quality of life (QOL), a critical component of which includes pain management.
Aims: Describe whether differences in demographics, symptoms, medications, or functional
skills exist between children with pain vs. no pain. Differences are further evaluated per parent
report compared to chart documentation.
Methods: Baseline data from 275 children with PNC from the multisite Charting the Territory
study were examined. Descriptive statistics were computed and compared for each evaluation
using appropriate statistical tests.
Results: 26% (67/258) of children had chart-documented pain compared to 55% (149/270)
per parent report. Children with pain were statistically significantly more likely than children
with no pain to have palliative care (PC) involvement; experience dyspnea and feeding
difficulties; use antacids, laxatives, antispasticity medications, NSAIDs, opioids, corticosteroids,
and adjuvant gabapentin; and have a G/J tube. Children with pain per parent report also had
lower functional skills (p=0.002). When children with chart-documented pain (n=67) were
compared to children with parent-reported pain but no documentation in their chart (n=84),
the former were statistically significantly more likely to have PC team involvement; experience
dypsnea and alertness/interaction changes; and use anxiolytics, antacids, laxatives, NSAIDs,
and opioids. They also used more medications than those with pain per parent report (median
5 vs. 3 medication classes, p<0.001).
Conclusion/Discussion: Pain is common among children with PNC. A large discrepancy in
its management exists between children with chart-documented pain and those with parentreported pain only. A better understanding of the factors contributing to this discrepancy is
needed to promote open communication and provide optimal pain management strategies that
enhance the QOL of these children and their families.
49 - AMITRIPTILINA VS GABAPENTIN PARA EL DOLOR NEUROPÁTICO EN PEDIATRÍA
(TOP 10)
SERLIN, Judith(1) | VERNA, Rodolfo(2) | LAGOMARSINO, Eduardo.A(2)
HOSPITAL NACIONAL ALEJANDRO POSADAS (1); HOSPITAL DE PEDIATRÍA DR. JUAN P.
GARRAHAN (2)
Aims or goal: El dolor neuropático es el “dolor intenso que se produce a lo largo de la
distribución de un nervio periférico o craneal”. Nuestro objetivo fué comparar dos algoritmos
terapéuticos para el alivio del dolor neuropático. Los pacientes atendidos en el consultorio
de la Unidad de Cuidados Paliativos del Hospital Garrahan fueron evaluados según criterios
de inclusión y exclusión para su ingreso al protocolo. El estudio duro 4 semanas. Los puntos
finales analizados fueron: remisión completa definido como desaparición total del dolor. Otras
variables fueron la reducción del dolor en un 40% comparado con el del dolor inicial: remisión
parcial; la aparición del dolor después de una semana de haber sido controlado: recaída. Como
objetivos secundarios se midieron la calidad de vida mediante scores PedsQL y su evolución
durante el estudio, efectos adversos y costos directos de la intervención.
Design, methods and approach: Estudio prospectivo, comparativo observacional de cohortes
Results: Se recolectaron 27 pacientes entre 6 y 16 años, 12 pacientes recibieron Amitriptilina
y 15 pacientes recibieron Gabapentin. De los pacientes que recibieron Amitriptilina el 83%
obtuvieron remisión total, el 17%abandonaron el tratamiento. Como efectos adversos las
primeras 48-72hs 2 pacientes presentaron boca seca y sueño. De los pacientes que recibieron
Gabapentin el 86% presentaron remisión total, 14% remisión parcial.Como efectos adversos
2 pacientes presentaron mareos y sueño las primeras 72 hs. El costo per-cápita por paciente
que recibió Amitriptilina fue $170 y $1254 por paciente que recibió Gabapentin para 28 días
de tratamiento. En los pacientes que recibieron Amitriptilina el resultado del score PedsQL fué
mayor que los PedsQL que recibieron Gabapentin
Conclusion/Lessons learned: El efecto analgésico fue similar en ambas drogas. Los efectos
adversos fueron leves y soportables en ambos grupos. La Amitriptilina es más económica en
términos de costos y por lo tanto más accesible para un tratamiento de dolor neuropático.
Necesitaríamos ampliar el número de pacientes para realizar aportes más concluyentes.
50 - IMPLEMENTING PERINATAL PALLIATIVE CARE FOR FETAL MALFORMATION IN A
DEVELOPING COUNTRY: INITIAL EXPERIENCE - GAI- GROUP OF STUDY ON PERINATAL
PALLIATIVE CARE (TOP 10)
BERNARDES, Lisandra Stein(1) | BENUTE, Glaucia Guerra(2) | GIBELLI, Maria Augusta Bento
Cicaroni(3) | GOMES, Ana Lucia(2) | BARBOSA, Tercilia Virginia Aparecida(4) | NASCIMENTO,
Nathalia Bertolassi(5) | KREBS, Vera Lucia Jornada(3) | FRANCISCO, Rossana P V(1)
BRAZIL (1); DIVISION OF PSYCHOLOGY, CLINICS HOSPITAL, UNIVERSITY OF SÃO PAULO,
SÃO PAULO, BRAZIL (2); DEPARTMENT OF PEDIATRICS, CLINICS HOSPITAL, UNIVERSITY OF
SÃO PAULO, SÃO PAULO, BRAZIL (3); DIVISION OF SOCIAL WORKER, CLINICS HOSPITAL,
UNIVERSITY OF SÃO PAULO (4); NURSE DIVISION, CLINICS HOSPITAL, UNIVERSITY OF SÃO
PAULO (5)
Background: Many pregnancies occur in world regions where medical abortion is not allowed
or where the access to this procedure is tortuous when a potentially lethal malformation is
diagnosed prenatally. Families facing severe fetal malformations need to make choices and cope
with an overwhelming potential number of issues. In this context, services offering perinatal
palliative care are of major importance.
Aims: To describe the follow up of the first 15 patients followed in our perinatal palliative care
service.
Methods: Case series describing the first 15 families followed by our team.
Results: Consultations started in may 2015. Fifteen families were followed. Of those, 10 (66.6%)
had a lethal malformation diagnosed and 5 (33.3%) had a malformation of uncertain prognosis
for which plan was to initially attempt resuscitation. A complete birth plan was constructed
with 53.3% of families. 93.3% of the children died in the prenatal or neonatal period. Families
evaluated the follow up as useful and the description of prenatal and post-natal consultations
is reported, as well as the feedback of the health team on duty.
Conclusion/Discussion: Prenatal palliative care may offer families and health professionals a
ABSTRACTS 69
unique experience when the pregnancy goes until term. The construction of a birth plan allows
health team on duty to understand values and goals of care of families and to make decisions
related to birth and neonatal care. Although long-term impact on families remains to be studied,
is seems as a fundamental approach when, for any reason, the pregnancy is not interrupted.
51 - ARE THERE BENEFITS TO EARLY PERINATAL REFERRAL IN TRISOMY 18 PATIENTS?
(TOP 10)
SANCHEZ PLAZAS, Liza | KOMATZ, Kelly C.
DEPARTMENT OF PEDIATRICS, UNIVERSITY OF FLORIDA COLLEGE OF MEDICINE JACKSONVILLE,
USA
Aims or goal: 1. Discuss the benefits of early referral of Trisomy 18 patients’ to hospice and
palliative care service. 2. Report a case of baby with Trisomy 18 with a postnatal referral to a
hospice program and the outcomes. 3. Recognize the interdisciplinary management and needs
of these patients and their families.
Design, methods and approach: Receiving news of expecting a child can be one of the most
joyful moments in life; however, discovering that your baby will be born with a life limiting
condition can be very challenging and difficult to manage through pregnancy. Trisomy 18 has
very low first year survival rates, yet approximately 50% of these babies live beyond the first
week of life. The emergence of perinatal hospice programs have provided parental support
in navigating through difficult medical decision-making, managing the social, emotional, and
spiritual processes endured, and ensuring comfort and quality care of their babies during their
short life.
Results: A 3-month-old baby girl born term with a prenatal diagnosis of Trisomy 18. Due to
prior counseling by medical staff of poor prognosis, no life-sustaining measures where provided
per request of mother, yet patient became stable. Parents were distressed and unprepared to
take her home due to the expectation of death after delivery. The medical team was unsure
of what next steps to take with the parents maintaining their decision for comfort care only.
Patient was referred to hospice care for assistance with transition to home. She was admitted to
a concurrent care program (combination of hospice and palliative care). Patient was discharged
home successfully and has been followed by a multidisciplinary team at home.
Conclusion/Lessons learned: Patients with Trisomy 18 can greatly benefit from perinatal
referral to hospice care services and their multidisciplinary approach. These services offer an
enhanced personalized care plan and bereavement preparation for the parents and family.
Having a birthing plan or advanced directives in place before birth can help guide the medical
staff and ensure parents’ wishes are honored at the time of birth.
52 - FINAL DE LA VIDA EN UCI NEONATAL: PROCEDIMIENTOS, MEDICAMENTOS Y
CUIDADO (TOP 10)
SOUZA, Jussara | SAMPAIO, Heloisa de Mesquita | SOUZA, Marcele Brito De
HOSPITAL DA MULHER - CAISM/UNICAMP
Background: El objetivo de la atención en la unidad de cuidados intensivos neonatales (UCIN)
es el mantenimiento de la vida y la restauración de la salud. Sin embargo, hay circunstancias en
las que los tratamientos de la salud no están considerados como los mejores intereses del niño.
Los avances tecnológicos proporcionan herramientas para hacer frente a muchas consecuencias
de anomalías congénitas y prematurez, pero las discusiones sobre el inicio y la continuación
del tratamiento en los recién nacidos con enfermedades graves son uno de los aspectos más
difíciles de la práctica neonatal. Aún más difícil son las decisiones con respecto a los recién
nacidos que tienen enfermedades graves o deformidades asociadas con el sufrimiento que no
puede ser aliviado y para los que no hay esperanza de mejora.
Aims: Cuantificar la atención recibida, además de los tratamientos y procedimientos realizados
en los recién nacidos en la Unidad de Cuidados Intensivos Neonatales en los dos últimos días
de la vida.
Methods: Estudio descriptivo retrospectivo, con un análisis cuantitativa, basado en una revisión
de las historias clínicas de los recién nacidos que murieron después de la admisión en la UCIN
durante el período 2010-2015.
Results: Se evaluaron 165 historias clínicas, con una edad gestacional media de 31 semanas (2241) y 1693g de peso (390-4040). El tiempo promedio de vida era de 10,9 días. Del total 44,2%
fueron malformados. 84,2% se sometió a un procedimiento (55,8% intubación y ventilación
mecánica 76,4%) y el 88,5% de los niños fueron tratados (67,9% con analgesia y sedación
en 26,7%). Del total de muertes sólo 23% de los niños fueron sometidos a reanimación, sin
embargo, 139 ya estaban en la ventilación (84,2%) y 103 estaban ya fármacos vasoactivos
(62,4%).
Conclusion/Discussion: En nuestro servicio, pocos niños en el período neonatal murieron
tras una decisión de la suspensión o la retirada del tratamiento.
53 - GOALS OF CARE WITH FAMILIES WITH PRENATAL DIAGNOSIS OF LETHAL
MALFORMATIONS BEFORE AND AFTER PERINATAL PALLIATIVE CARE GROUP. GAIGROUP OF STUDY ON PERINATAL PALLIATIVE CARE (TOP 10)
Stein(3) | BENUTE, Glaucia Guerra(4) | BERTOLASSI, Nathalia(5) | BARBOSA, Tercilia(6) |
BRAZIL (1); 3DIVISION OF PSYCHOLOGY, CLINICS HOSPITAL, UNIVERSITY OF SÃO PAULO, SÃO
PAULO, SÃO PAULO, BRAZIL (3); DIVISION OF PSYCHOLOGY, CLINICS HOSPITAL, UNIVERSITY
OF SÃO PAULO, SÃO PAULO, BRAZIL (4); NURSE DIVISION, CLINICS HOSPITAL, UNIVERSITY
OF SÃO PAULO (5); DIVISION OF SOCIAL WORKER, CLINICS HOSPITAL, UNIVERSITY OF SÃO
PAULO (6)
Background: Medical decisions after diagnosis of lethal malformations should be guided by
parents values and goals of care. Physicians must discuss goals of care with the family in
perinatal palliative care.
Aims: Description of similar cases before and after introduction of Perinatal Palliative Care
Methods: case report
Results: Case 1: KAS was followed in prenatal care unit and gave birth to a newborn with
congenital heart disease, esophageal atresia and large sacral myelomeningocele at 37 weeks,
by C-section. Standard advanced life support was offered. He survived for 50 days and was
submitted to painful procedures, he was apart from his family. When he died, just the professional
staff was present. Case 2: LTFG was referred to our perinatal palliative care unit at 25 weeks of
pregnancy because the fetus had giant omphalocele and extensive encephalocele. We discussed
the impossibility of curative care with the parents. The couple chosed vaginal birth without fetal
monitoring and not to introduce advanced life support and to focus on neonatal comfort. LTFG
gave birth to a dead newborn at term. Parents and the grandmother were supported by the
team while they stayed with the baby in their arms after birth.
Conclusion/Discussion: Perinatal Palliative Care approach for this lethal malformation
allowed the discussion of goals of care with parents, changing the length of stay in the ICU, the
exposure to painful futile treatments. Furthermore, family was allowed to have a more dignified
moment of death.
54 - THE FAMILY MANAGEMENT OF CHILDHOOD CANCER SURVIVORS (TOP 10)
SA, Natalia Nigro | ICHIKAWA, Carolliny Rossi de Faria | BOUSSO, Regina Szylit | MISKO, Maira
Deguer | SANTOS, Maiara Rodrigues | SAMPAIO, Patrícia Stella Silva
Background: The increasing number of cancer survivors has been altering the concern of
health professionals by changing the cancer treatment paradigm and calling for a model of
care focused on these survivors and their families. Knowing how the family adjusts and seeks
normality after cancer treatment is essential to their quality of life.
Aims: This study aims to know the family management of childhood cancer survivors.
Methods: This is a qualitative research, using the Family Management Style Framework as
the theoretical framework and thematic analysis as the methodological one. The family of one
childhood cancer survivor of a support group from an Outpatient Specialty Center participated
in the study.
Results: The family defines their child as special and strong because he/she has experienced
childhood cancer. The family considers it necessary to set goals on how and when to seek help
ABSTRACTS 71
for the child. Management behaviors were described as the need to remain vigilant to identify
a possible resurgence of symptoms. The perceived consequences indicate that the families of
childhood cancer survivors experience fear of a relapse and insecurity and uncertainty about
the future of the child and family.
Conclusion/Discussion: Cancer survival requires that the family re-adapt to the child’s
chronic condition. These children / adolescents and their families need continuous health care,
even after the end of treatment. By understanding the different forms of family management, it
is possible to identify key elements revealed by family responses of childhood cancer survivors
and contribute to interventions that may facilitate the strengthening and better management
of the family to this condition.
55 - USAGE OF TECHNOLOGY ON HEALTH IN PEDIATRIC PALLIATIVE CARE (TOP 10)
RODRIGUES, Bruna | JOSÉ, Sabrina Ayd Pereira
UNIVERSIDADE FEDERAL DO RIO DE JANEIRO
Background: In a palliative environment care, some devices are used as technologic tools, in
order to improve the quality assistance, which is focused to control the symptoms, as well as
the children life quality.
Aims: Quantify and analyses the technology applied in scientific papers related to Pediatric
Palliative Care.
Methods: As subject matter of palliative of pediatric cares and an integrated review: Does
the technology in health is actually applied as part of palliative cares? It was conducted by
searching the scientific works (theses, dissertations and articles) published in the period 2010
to 2014, the Lilacs and Medline databases and database of theses and dissertations from the
CAPES portal through the following official descriptors and not official: technology, biomedical
technology, technology applied to health care, healthcare technology, pediatrics and palliative
care.
Results: The literature search resulted in 10 publications (05 CAPES Portal, 01 Lilacs and 04
Medline) and after detailed analysis of those, 03 productions were selected: 01 of Lilacs, 01
CAPES portal and 01 Medline. The results shows that the scientific production is the lack of
publications regarding the applicability of the health technology focused on palliative care.
However, the qualitative analysis of production, identified the applicability of the technology in
the area of pediatrics generated the phenomenon confidence and change in attitude of society
towards death, however, the scientific evidence regarding the comfort strategies in relation to
control of symptoms in the care environment.
Conclusion/Discussion: It is necessary to update and reflect on how to put together the
technology to oncology treatments, aimed at decreasing the symptoms of children and the
relief of suffering.
56 - “LIVING WITH PAIN – THE LIFE FROM CHILDRENS AND ANDOLESCENTS IN
PALLIATIVE CARE”
BORGHI, Camila Amaral | ROSSATO, Lisabelle Mariano | BOUSSO, Regina Szylit | DAMIÃO,
Elaine Buchhorn Cintra | GUEDES, Danila Maria Batista
Background: Pain is a stressful event for children and adolescents and can have negative
consequences even more when it is accompanied by a chronic disease with no posibility of cure.
The pain it is quite experienced by children and adolescents in situation of chronic disease and
in the end of life. Pediatric Palliative Care is not limited to the end of life care, sometimes it is
necessary since childhood until adulthood. The focus of Palliative Care is to provide the highest
quality of life possible to children and adolescents and their families while minimizing suffering
and pain.
Aims: The main objective it is knowing the daily experience of childrens and adolescents in
palliative care, and the specific goal is knowing how childrens and adolescents in palliative care
manage pain in their daily lives.
Methods: Considering the uniqueness of the experience of children and adolescents in
palliative care, we chose to develop a qualitative study. We used the Theory of Cognitive
Development Piaget as theoretical framework and the Oral History as the methodological one.
These frameworks allow that children and adolescents (from 6 to 17 years 11 months and 29
days), suffering from a chronic disease that caused pain and in palliative care have a voice.
Results: We have interviewed six children and adolescents, all have chronic disease and pain.
We found three themes describing pain; using a variety of alternatives for pain control and;
beeing a normal children and a adolescent despite pain and disease.
Conclusion/Discussion: Despite the difficulty of interviewing childrens and teenagers, we
have realized that they have a lot to say and teach us, especially with regard to how they
deal with pain in their daily lives. Although pain is a limiting factor in the lives of children and
adolescents, we found that they faced their daily pain and still had a life beyond pain and illness.
In addition, we highlight the relevance of nurses understanding that effective management of
pain in children is essential for a normal life and less suffering.
57 - PRESCRIBING PRACTICES IN A PEDIATRIC PALLIATIVE MEDICINE UNIT OF A
TERTIARY CANCER CARE CENTRE: A FIVE-YEAR RETROSPECTIVE SURVEY
DAMANI, Anuja | SALINS, Naveen | MUCKADEN, Ma
Aims or goal: The study aimed to evaluate drug prescribing practices in Pediatric Palliative
Medicine and assess their adherence to WHO recommendations.
Design, methods and approach: Design: Retrospective chart review. Setting: Outpatients
department and inpatient department of Pediatric Palliative Medicine. Population: Pediatric
patients registered with Department of Palliative Medicine. Duration: 1st January 2010- 31st
December 2014. Data source: Medical charts of patients who had received palliative care
consultation. Outcome measures: Measures recorded at each consultation (1) Demographic
and clinical characteristics including weight, height and body surface area (2) ECOG score (3)
Symptoms at presentation and follow-up measured by ESAS (4) Medications at referral, any
known drug allergies, laboratory details (5) Number of drugs prescribed, class, generic, dose
and route of medications prescribed (6) Adverse effects (7) Average cost of medications per
day (8) Comparison of the drug used with standard WHO guidelines for drug dosing. Data
collection and analysis: Data for each patient encounter was entered directly into case record
form specific for this study. Descriptive statistics (proportions, means and SD, medians, and
inter-quartile ranges as appropriate) were used to describe patient characteristics, symptoms,
and details of drug prescribing practices. Equivalency of proportions in contingency tables was
tested using the chi-squared test or Fisher’s exact test as applicable. Paired t-test for ESAS
scores with baseline & follow-up to determine if there was any significant improvement in from
baseline to follow-up. Data analysis was done using SPSS 20.
Results: Results will be presented in form of charts and tables at the conference.
Conclusion/Lessons learned: The study will help to 1. Assess the rationality of current
prescribing practices in Pediatric Palliative Medicine. 2. Establish a baseline data of prevalent
practices and cost of medications per day for this set of population. 3. Provide an insight toward
changing the current prescribing practices.
58 - CUIDADOS PALIATIVOS PEDIÁTRICOS DOMICILIARIOS:
ENFERMEDAD EN FAMILIA, FINAL DE VIDA EN LA PAZ DEL HOGAR
TRANSITAR
LA
GALLO, Javier(1) | MADEMANN, Mónica Vivian(2) | NALLAR, Martín(1)
CAREHOME (1); CAREHOME (2)
Aims or goal: Mostrar los beneficios que los CPP domiciliarios aportan a los pacientes con
enfermedades limitantes para la vida y sus familias, en el ideal de transitar la enfermedad y el
final de vida en el hogar, rodeados de afecto y con un buen control de síntomas.
Design, methods and approach: Se describirá el caso de Alan, con diagnóstico de encefalopatía
crónica no evolutiva. A sus 6 años, su pediatra de internación domiciliaria solicita seguimiento
en domicilio por nuestro equipo de CPP, por dolor e hipertonía de difícil manejo, y progresión
de su enfermedad de base, con reiteradas internaciones en los últimos meses. Sus padres
manifiestan el deseo de priorizar la calidad de vida, las medidas de confort y la permanencia en
el hogar de Alan por sobre el resto de los aspectos del tratamiento. Se comienza el seguimiento
por equipo compuesto por pediatra especialista en Medicina Paliativa y psicóloga de familia,
articulando activamente con el equipo domiciliario preexistente (pediatra, kinesiólogos, terapista
ABSTRACTS 73
ocupacional, estimuladora visual y enfermeras). Se sugiere la incorporación de una reikista
al equipo, con muy buena aceptación de la familia. Se apunta inicialmente al tratamiento
del dolor, logrando el control utilizando morfina. Concomitantemente se trabaja con padres y
hermanos menores los aspectos psicológicos ligados al deterioro y el avance de la enfermedad,
sus implicancias a futuro, la toma de decisiones y la adecuación del esfuerzo terapéutico al
momento actual de la enfermedad. Se trabajó de forma anticipada el momento del fallecimiento,
apuntando a un proceso de duelo favorable.
Results: Alan falleció luego de tres años de seguimiento, en su hogar, acompañado de sus
padres y hermanos, sin internaciones durante ese tiempo, con un buen control de síntomas con
opioides (requirió escalar dosis y rotación a metadona) y benzodiacepinas por vía oral durante
la enfermedad y en final de vida
Conclusion/Lessons learned: El trabajo en equipo interdisciplinario, con la incorporación
activa de la familia, en el rol dual de receptores del cuidado, y a la vez como parte del equipo,
permite cumplir el objetivo de transitar la enfermedad en familia, y un final de vida digno en
el hogar.
59 - NUEVOS ABORDAJES TERAPÉUTICOS: MANDALAS
GONZALEZ, Patricia
Background: Las actividades creadoras son una vía para curar la mente. Mandala: diseño
circular que vuelve la conciencia a la unidad. Para Jung: arquetipo del orden interior que
representa: el esquema de nuestra psiquis.
Aims: Objetivos: 1) Estimular la posibilidad de realizar actividades creadoras. 2) Reforzar el
hecho terapéutico al utilizar esquemas organizadores.
Methods: Método de composición: Círculo: simbología inconsciente del origen, protección e
integridad. Centro: hace que pongamos atención al propio centro. Imagen total: representación
de nuestro propio interior se va ordenando. Es un arquetipo unificador, organizador del caos
interno.
Results: Imágenes visuales: herramientas para la curación. Al integrarle color: generan
estímulos y sensaciones provocan diferentes respuestas químicas cerebrales: a) endorfinas
(placer, relajación, bienestar) B) adrenalina (displacer, huida, estrés) Beneficios del Mandala:
A) Proceso terapéutico asociado a la idea de ORDEN. B) Al ser su forma concéntrica y simétrica,
favorece estados de concentración y organización interna
Conclusion/Discussion: Arte y curación implican la observación de la forma en que
pensamientos, emociones e imágenes pueden cambiar el flujo sanguíneo y el equilibrio
hormonal del cuerpo. Las neuronas se encienden y, como en un alud, se conectan con el cuerpo
de tres maneras: 1) La parte derecha del cerebro envía mensajes a las zonas inferiores que se
conectan con hipotálamo. Las descargas neuronales provienen de: la realización del arte , del
movimiento o del recuerdo de ellos. 2) Se produce un cambio químico como resultado de los
cambios hormonales. La fisiología resultante es igual a una profunda relajación o meditación.
El ritmo cardíaco se enlentece, la presión arterial baja, la respiración es cada vez más pausada,
la sangre va a hacia los intestinos; todo el cuerpo cambia. 3) Las imágenes hacen que zonas
del cerebro liberen endorfinas y otros neurotransmisores que afectan las células del sistema
inmunológico. Los neurotransmisores alivian el dolor y hacen que el sistema inmunológico
funcione con eficiencia...
60 - “HACEMOS LINDA VOZ, TÚ Y YO”: PROCESO MUSICOTERAPÉUTICO CON UNA
PACIENTE PORTADORA DE UN GLIOMA DE ALTO GRADO
HUGO, Mayra(1) | SCHAPIRA, Diego(2)
FUNDACIÓN PÉREZ SCREMINI, MONTEVIDEO , URUGUAY (1); PROGRAMA ADIM (ASISTENCIA,
DESARROLLO E INVESTIGACIÓN EN MUSICOTERAPIA) BS AS, ARGENTINA (2)
Aims or goal: este trabajo describe el acompañamiento y el abordaje musicoterapéutico que,
desde el diagnóstico hasta su fallecimiento, se llevó a cabo con una paciente de 15 años, tratada
por un tumor cerebral. Las intervenciones se realizaron desde tres de los cuatro ejes de acción
del abordaje plurimodal en musicoterapia (apm). Se detallarán las técnicas implementadas y
se destacará el rol que jugó la construcción de una transferencia positiva con la paciente y su
familia. El objetivo es mostrar el aporte que la musicoterapia puede ofrecer, como soporte,
como parte del equipo de salud que atiende a los pacientes oncológicos.
Design, methods and approach: Caso clínico. Se trabajó desde el Abordaje Plurimodal en
Musicoterapia . Se realizaron intervenciones en el Hospital, en Campamento y en domicilio. El
proceso tuvo una duración de un año y medio.
Results: El trabajo con musicoterapia, especialmente con canciones, constituyó, para esta
paciente adolescente con dificultades para acceder al lenguaje simbólico, un soporte y un
acompañamiento fundamental en su tránsito hacia el final de la vida, ya que le permitió expresar
deseos, miedos y emociones que no lograba verbalizar.
Conclusion/Lessons learned: A lo largo del proceso, se pudieron observar las tres funciones
que - según el APM- tiene la música en Musicoterapia: objetivo en sí misma, medio en el que
se desarrollan los procesos terapéuticos y mediadora, de la relación entre la paciente y el
musicoterapeuta, de la paciente con otra paciente, y de su forma de vincularse con la música
en sí. También se evidenció el valor de la intervención y del vínculo terapéutico, ofreciendo a
esta paciente momentos de mucha gratificación y un adecuado tránsito hacia el final de la vida.
61 - EXPERIENCE OF USING MORPHINE IN CHILDREN WITH ONCOHEMATOLOGICAL
MALIGNANCIES IN RUSSIAN RESEARCH CLINICAL CENTRE FOR PEDIATRIC
HEMATOLOGY, ONCOLOGY AND IMMUNOLOGY NAMED AFTER D. ROGACHEV
KUMIROVA, Ella | VIAZOVA, Y | LITVINOV, D | SHTEFANYK, O. | MASCHAN, A.
FEDERAL RESEARCH CLINICAL CENTRE
IMMUNOLOGY NAMED AFTER ROGACHEV
FOR
PEDIATRIC
HEMATOLOGY,ONCOLOGY
&
Background: Treatment of chronic persistent pain is one of the important components of the
maintenance therapy during treatment of oncohematological diseases in children. According
WHO 2012 recommendations the gold standard is the use of morphine for moderate or severe
pain in children. We have analyzed the use of injectable forms of morphine which is allowed for
pediatric patients in Russia. During 2014 and 11 months of 2015 y. 15 726 patients were admitted
to the Federal Research Clinical Center of Pediatric Hematology, Oncology and Immunology
named after Dmitry Rogachev. Morphine was used in 195 children (1,2%). Age of the patients
treated with morphine, was 3 months to 22 years. Morphine has been used in patients with the
following groups of diseases: acute leukemia, aplastic anemia and dyskeratosis, neuroblastoma,
lymphoma, immunodeficiency, hemophagocytic histiocytosis, medulloblastoma, bone tumors.
Since virtually all patients have access to the central vein, the morphine was administered by
extended intravenous infusion. One patient was administered epidural morphine. Technique
of patient-controlled analgesia adapted in the center as well. The main indications for its
application were: pain developed complications due to treatment (167 patients - 86%), pain
at the terminal stage of oncohematological malignancies (28 patients - 14%). Morphine was
administered in accordance with WHO guidelines, 2012 and National Clinical Recommendations,
2014 at a starting dose and increased if necessary in the absence of maximum doses. Total
for the analyzed period was used by 4536 ml of a 1% solution of morphine hydrochloride or
45 361 mg of morphine. We did not observe any serious complications and toxic deaths when
using this drug. Analgesic effect was assessed using the pain scale, depending on the age. In
all cases, hospital doctors administered morphine themselves. Palliative specialist brought to
discussion in cases of manifestations of resistance to standard doses of morphine or for difficult
communications with the patient and parents.
Conclusion/Discussion: The use of morphine at oncohematological pediatric centre is a
routine procedure without any serious complications.
62 - PERSONAL RESUSCITATION PLAN COMPLETION AND USE IN A UK TERTIARY
PAEDIATRIC ONCOLOGY CENTRE
LAWRENCE, Kirsty | COOMBES, Lucy | ANDERSON, Anna-karenia
ROYAL MARSDEN HOSPITAL NHS FOUNDATION TRUST
Background: The use of Personal Resuscitation Plans (PRPs) allows clinicians to document
the wishes of the child and family around multiple aspects of care. Such documentation is
considered good practice within palliative care settings in the UK. The use of PRPs has been
found acceptable to both professionals and parents.
ABSTRACTS 75
Aims: To audit how PRPs were completed and whether they were then followed in a UK tertiary
paediatric oncology centre.
Methods: All PRPs completed during 2013-2015 were audited to examine the reason given for
implementation and what signs and symptoms families were told to expect. Reasons for not
completing a PRP were explored. Individual aspects of care were analysed to see how many
families wanted advanced life support procedures, antibiotic and blood product support and
artificial nutrition/hydration. Finally, whether the plan was followed at end of life was analysed.
Results: Over the audit period 80 eligible patients died. 41 had PRPs completed by the hospital
(in 49% of cases by an oncologist) and 7 were completed elsewhere e.g., local hospital/hospice.
32 children died with no PRP in place, predominantly as discussions were held and documented
elsewhere. The main reason given for completion of a PRP was progressive disease and numerous
signs and symptoms to expect were given. Parents chose to sign paperwork in 39% of cases.
Advanced life support decisions were followed in 88% of cases. Decisions made regarding
antibiotic and blood product support and nutrition/hydration were followed in majority of cases.
Conclusion/Discussion: High professional anxiety exists to ensure PRPs are completed with
families. Although this audit identifies that plans are usually followed once in place, for those
patients without one this did not mean that they consequently received full resuscitation. In
fact, those who did receive full resuscitation had a PRP in place which was not followed.
63 - SÍNTOMAS MÁS FRECUENTES AL FINAL DE LA VIDA EN NIÑOS CON TUMORES
DEL SISTEMA NERVIOSO CENTRAL (SNC)
LIZARRAGA, Fernando José | DI COLA, Estela Haydee | MOSTAJO, Stella | LEGUIZAMON, Cinthya
HOSPITAL DEL NIÑO JESUS TUCUMAN
Background: Los niños con tumores del SNC (independientemente de la estirpe celular y/o de
su localización) pueden presentar una serie de síntomas que podrían predecir la etapa final de
la enfermedad.
Aims: Identificar los síntomas que con mayor frecuencia pueden anticipar la etapa final de la
vida (último mes) de los pacientes con tumores del SNC y así permitir adecuar los cuidados del
paciente y la familia en esta fase.
Methods: Se presentan 8 de pacientes con diagnóstico de tumor del SNC sin opción curativa
(tumores intrínsecos de tronco encefálico, glioblastoma, meduloblastoma y melanoma). Se
realizó un estudio observacional retrospectivo mediante la revisión de las historias clínicas.
Results: Los resultados encontrados muestran que los síntomas que se presentaron con mayor
frecuencia son: retención urinaria (66%), alteración de la conciencia, (44%), constipación
(33%) y broncorrea (33%).
Conclusion/Discussion: Los síntomas que se encontraron con mayor frecuencia fueron la
retención urinaria y la depresión del sensorio. La retención urinaria y la constipación posiblemente
están vinculadas a alteraciones a nivel de la musculatura lisa mientras que la broncorrea se
debe a una alteración del centro respiratorio que determina una mecánica ventilatoria ineficaz.
La detección precoz de estos hallazgos durante la consulta clínica podría facilitar el proceso
de toma de decisiones, el control del síntoma, la adecuación del esfuerzo terapéutico y la
comunicación veraz a la familia para posibilitar una intervención oportuna.
64 - THE GREAT SOLITUDE OF NEONATES, BABIES AND INFANTS IN PAIN NEEDS OUR
NEW ATTITUDE - IN MEMORY OF GIAMPAOLO MAGNANI BORN ON 5TH MARCH 2009
DIED ON 17TH OCTOBER 2010
MAGNANI, Luisella
PROFESSOR LUISELLA MAGNANI - AFFILIATION WITH THE UNIVERSITY OF STUDIES OF
INSUBRIA OF VARESE, ITALY
Background: There is a Great Solitude in Neonates, Babies and Infants when they suffer,
when they are in pain, when they live their pain. They are deeply closed within their pain
and in their solitude, and this solitude is fear, anguish, rage, distress, abandon, they cannot
express verbally. And, they suffer more and more, calling out for being understood, for feeling
understood, millisecondly.
Aims: Their Solitude needs our New Attitude which must contain our Behaviour, Compassion,
Charity-of-Knowledge, Continuous Dialogue and Empathy. These urgent paradigms ask for
being converted into sintagms-of-actions instilling our time inside their life as the Care-of-allCares.
Methods: Children need to be-and-feel understood and in order to create this event of
full understanding, it is necessary to care in the Non-PharmacologicalCare their Insideness
and their Outsideness, that’s why the Atmospheral Behavioural, Cognitive, Compassional,
Communicational, Emotional, Environmental, Sensorial and Situational Care can care these
Children along with the PharmacologicalCare.
Results: Their Solitude is great if there is not a Comprehensive, a Total Care dedicated to
EveryChild. Greater is the Solitude, Greater and Greater is their Pain, Suffering and Distress.
When you speak to a PreverbalChild in Pain, he understands that you are there just for him,
and you become Atmosphere, Behaviour, Cognition, Compassion, Communication, Emotion,
Environment, Sensation, Situation. Just-in-that-moment. It depends on the way you are, you
think, you speak, you act for-and-before him.
Conclusion/Discussion: Considering, studying, interpreting, estimating, valuing, millisecondlyand-continuously, the Insideness as well as the Outsideness belonging to a Newborn, a Baby,
an Infant in Pain helps the Child deeply and he feels respected, understood, cared in his
Individuality, Subjectivity, Unicity and Personality.
65 - “VINCULAR EL DOLOR”
MINDEGUÍA, Martín Ignacio
SANATORIO MATER DEI
Background: Al hacer posible la integración del dolor y la pérdida en oposición a la disociación
o fragmentación, se proporciona significado vívido y dignidad a la vida del paciente, modificando
así la experiencia dolorosa.
Aims: Proponer un modelo de abordaje que permita identificar cómo el paciente estructura su
experiencia frente al dolor, para planificar luego una estrategia terapéutica adecuada.
Methods: Estudio Observacional, Serie: 5 casos. Pacientes con dolor moderado/severo.
Valoración con uso de escalas, y el siguiente modelo teórico: 1) Yo “SOY” dolor: se identifica
plenamente con su dolencia, y pierde contacto con su identidad, reduciéndose a un “ser
doliente”, indiferenciado de la experiencia sensorial desagradable que percibió. Las posibilidades
de contacto y diálogo con el síntoma y con los otros quedan reducidas. 2) Yo “A TRAVES” del
dolor: se identifica con el síntoma, lo reconoce como propio, logra diferenciarse de este, pero
inmediatamente lo traslada a su frontera de contacto. Sus posibilidades de interacción están
restringidas. Prima el interjuego: víctima–victimario / opresor–opresivo. 3) Yo “Y” el dolor: se
identifica con el síntoma, lo reconoce como propio, pero logra diferenciarse de este al afianzarse
en su base y en su estructura de personalidad. Las posibilidades de contacto y diálogo son
exponenciales. Cada paciente recibió tratamiento farmacológico según recomendaciones de
la OMS, y se realizaron intervenciones con enfoque Gestalt según la estructura predominante.
Results: Las creencias y expectativas de los pacientes modificaron su umbral de dolor, afectando
su experiencia, su expresión y su adaptación al dolor. Se constato en 2 casos una reducción de
las dosis de medicación necesaria para controlar el dolor.
Conclusion/Discussion: Conocer cómo el paciente estructura su experiencia dolorosa nos
permite orientar la intervención terapéutica. A través de la ampliación de la consciencia respecto
al síntoma o dolencia, y afianzando las estructuras de Identidad, es posible que el paciente
restablezca el diálogo tanto interno (paciente - síntoma/enfermedad) como externo (paciente
- ambiente), y con ello la restructuración del sí mismo. Para validar este modelo, debería
desarrollarse un estudio de mayor magnitud.
66 - TOLERANCIA A OPIOIDES Y DOLOR REFRACTARIO: UTILIDAD DE METADONA EN
PEDIATRIA.
MINDEGUÍA, Martín Ignacio(1) | STICCO, Nicolas(2) | NALLAR, Martín(3)
SANATORIO MATER DEI, PALCARE (1); PALCARE (2); HOSPITAL DE NIÑOS DR. R. GUTIÉRREZ
(3)
Background: Existe una variabilidad individual frente a la respuesta analgésica, y asimetría
entre la tolerancia analgésica y tóxica de los opioides potentes. La Rotación de Opioides (ROP)
se plantea como una herramienta terapéutica para mejorar la analgesia o reducir los efectos
secundarios en casos con un control analgésico insuficiente.
ABSTRACTS 77
Aims: Presentar el caso de una niña con dolor refractario y rápida tolerancia a la titulación de
dosis opioides sin efectos adversos, con buena respuesta a la ROP (Morfina - Metadona)
Methods: Reporte de un caso.
Results: Niña de 8 años (Hipotiroidismo, Epilepsia, Retraso madurativo) con Sarcoma abdominal
indiferenciado con Metástasis pulmonares con dolor abdominal severo. Se realiza un abordaje
interdisciplinario. Tratamiento farmacológico inicial: Morfina + Ibuprofeno + Gabapentin.
Evolucionó torpidamente debido a su estado clínico y al rápido crecimiento tumoral, requiriendo
ascensos progresivos de Morfina, con escasa respuesta analgésica. Ante la presencia de dolor
refractario, asumido por progresión de enfermedad y desarrollo de tolerancia, se decidió realizar
ROP. Se calculó la dosis de Metadona (MTD) según ratios de conversión de la OMS (10:1
Morfina:MTD para dosis de Morfina › 300 mg), y se aplicó una disminución inicial de un 20%
de la dosis calculada. Se comenzó con la dosis calculada de MTD c/ 8 hs (SNG) y se realizó
un descenso progresivo de la Morfina (EV) en 48 hs (50% de la dosis/día). Se constató buena
tolerancia a la ROP y excelente respuesta terapéutica (control del dolor basal). Persistió con
dolor irruptivo: espontáneo e incidental, con buena respuesta analgésica a los rescates con
Morfina (EV) + medidas no farmacológicas.
Conclusion/Discussion: Frente al desarrollo de tolerancia y/o dolor refractario la ROP es una
herramienta útil y eficaz. Dado que las tablas equianalgésicas aún no están adaptadas a la
población pediátrica, y a que la Metadona presenta características farmacocinéticas variables,
resulta imprescindible monitorizar estrictamente el proceso hasta conseguir dosis estables.
Consideramos necesario, además del tratamiento farmacológico, un abordaje interdiscilplinario.
67 - SEDATION AT THE END OF LIFE CARE IN A CHILDREN’S CANCER TREATMENT INSTITUTION
MORAES, Carlota | KASA, Carolina
INSTITUTO DE ONCOLOGIA PEDIATRICA -IOP/GRAACC/UNIVERSIDADE FEDERAL DE SÃO
PAULO
Background: Sedation at the end of life care in a children s cancer treatment institution
control, palliative sedation is a treatment option. Literature data show that the prevalence of
palliative sedation varies between 16% and 52%. In the study of Fainsinger et al, in Canada, a
unit of Palliative Care, found a prevalence of 16% of sedation, in hospices, Morita et al., Japan,
described 48% of sedation, in Brazil, in the infirmary of Palliative Care the State Civil Servant
Hospital of São Paulo (HSPE / SP), Ferreira et al found a prevalence of palliative sedation 36.7%.
Aims: It is intended in this study through medical record review describe the indication of
palliative sedation, refractory symptoms in pediatric patients with cancer diagnosis at the end
of life in pediatric oncology institute first of October 2013 to early October 2015.
Methods: this study through medical record review describe the indication of palliative sedation,
refractory symptoms in pediatric patients with cancer diagnosis at the end of life in pediatric
oncology institute first of October 2013 to early October 2015.
Results: During this period, 68 patients following with the team of pediatric palliative care
died, aged 1 year and 21 years of age, these patients, 27.9% received palliative sedation
because they have refractory symptoms. the symptoms are respiratory failure 10 patients.
1 patient developed respiratory failure and bleeding, pain, 5 patients, 2 patients confusion,
seizure 1 patient.The drug of choice for all patients to achieve sedation was midazolam,,
received analgesia with morphine 17 patients, one patient with fentanyl and one with ketamine
and morphine. All families received information about sedation and agreed to the procedure,
the average sedation time was 24 hours.
Conclusion/Discussion: The development and implementation of institutional-based
guidelines with clear stance on the discussed variances is necessary for consistency in practice.
Data on provision of palliative sedation after implementation of guidelines needs to be collected
and disseminated for a better understanding of the current practice.
68 - OPIOIDE INDUCED HYPERALGESIA
AMARAL, Tatiana Mattos | LIMA, Sara H | MOTA, Joaquim Antonio César | RODRIGUES, Karla
Emilia Sá
HOSPITAL DAS CLÍNICAS / UNIVERSIDADE FEDERAL DE MINAS GERAIS
Background: Diagnosis and treatment of pain in children with cancer constitutes big challenge
to health professionals. Pain is the most common discomfort experienced by these children and
occurs in 89% of patients with advanced stage disease.
Aims: Objective: To present and discuss opioide induced hyperalgesia, a difficult diagnosis that
negatively affects the treatment of pain. Method: A case report from a patient admitted to an
University Hospital, diagnosed with Askin’ tumor, that evolved with progression of the disease
and was admitted to pain control.
Results: Case: The patient presented with severe chest pain (VAS 10), constant, burning,
triggered by touch, contact with clothing and palpation in places adjacent to resection of
the primary tumor. At this time, the patient was already receiving gabapentin, amitriptyline,
dexamethasone and oral morphine 0.1 mg / kg / dose (6 times a day), and rescue doses on
demand. Tailoring doses were progressively reached to the following: gabapentin (900 mg /
day), amitriptyline (50 mg / day), morphine (0.3mg / kg / dose, 6 times/day orally), dipyrone
20mg / kg / dose, 4 times). By increasing the morphine doses there was a change in pain
characteristics with exacerbation of pain, burning and stuck by the light touches on other areas
of the body (abdomen and limbs), in addition to increased pain in response to painful stimuli.
The diagnosis of opioid-induced hyperalgesia was made and gradual reduction of morphine was
initiated with subsequent rotation to methadone that reached a progressive pain control.
Conclusion/Discussion: CONCLUSION: Opioids related hyperalgesia must be considered in
cases of pain control failure and increasing dose for the analgesic effect causes pain exacerbation.
69 - TRABAJO COLABORATIVO ENTRE CUIDADOS PALIATIVOS Y TERAPIA INTENSIVA
PEDIATRICA: ANALGESIA Y SEDACIÓN EN UNA UCIP
NALLAR, Martín | BERRONDO, Claudia | TERAN, Eugenia | MEZZENZANI, Mariana | POLOP,
Virginia | ARIAS LÓPEZ, María Pilar | LASCAR, Eulalia
Background: La inadecuada analgesia y sedación en UCIP impacta en la calidad de vida de los
pacientes, asociándose a más días de ARM e internación. Su protocolización mejora la atención
de los niños.
Aims: Describir la implementación de una mejora en analgesia y sedación, en colaboración
entre los Servicios de Cuidados Paliativos y Terapia Intensiva.
Methods: Diseño prospectivo, cuasi experimental. UCIP médico-quirúrgica en hospital pediátrico.
Año 2014. Intervención: reuniones multidisciplinarias evaluativas. Revisión de evidencia
bibliográfica. Se define normativa: separar infusión de analgésicos y sedantes, optimizar dosis y
rescates, evaluar mediante escalas, restricción de hidrato de cloral, ketamina y levomepromacina.
Difusión: ateneos, enfermería y mail. Dos cortes mensuales de prevalencia: inicial y al cuarto
mes, registrándose: número, dosis y días de drogas. Estadística descriptiva, frecuencias y
porcentajes (variables categóricas), mediana y DS (variables continuas). Comparación con test
no paramétricos y chi2 según corresponda.
Results: Cortes 1 y 2: 17 y 14 pacientes respectivamente. Sin diferencias estadísticamente
significativas en población, días de AVM y de UCI. Cumplimiento de infusión separada (sedantes
y analgésicos): 100%. Dosis máxima de fentanilo y midazolam (mcg y mg/kg/h) fueron 6 y 0.3
en período 1 vs 5 y 0.2 en período 2 (p:0.5/0.22). Hidrato de cloral: 11 pacientes (64.7%) en
el 1 vs 5 (36.7%) en el 2 (p: 0.10). Ketamina: ninguno usó en período 2. Levomepromazina:
4 pacientes (23.5%) en el 1 vs 2 (14.3%) en el 2 (p: 0.51). Dexmedetomidina: 3 pacientes
(17.6%) en período 1 vs 8 (57.1%) en período 2 (p: 0.02). Mediana de días de metadona y
lorazepan, 9.5/11.1 en período 1 y 6/6.1 en período 2.
Conclusion/Discussion: Cumplimiento del 100% en separación de infusiones y rescates
diferenciados en período 2. Disminuyó la dosis media y máxima de fentanilo y midazolam y los
días de metadona y lorazepan. Descendió el uso de hidrato de cloral y de levomepromacina. No
se indicó ketamina y aumentó el uso de dexmedetomedina.
70 - CORDOTOMIA. UNA ALTERNATIVA PARA EL TRATAMIENTO DEL DOLOR
REFRACTARIO EN NIÑOS
NAVARRO-MINGORANCE, Alvaro(1) | MATEO-PEREA, Ginés(1) | ORTIZ-SAN ROMÁN, Lucia
Belen(2) | GARCÍA-MARTINEZ, Silvia(1) | ROMERO, Maria(1) | TOVAR-MACHADO, Rocio(1) |
TOMAS-GIMENO, Juan Jose(1) | REYES-DOMINGUEZ, Susana-beatriz(1)
HOSPITAL CLÍNICO UNIVERSITARIO VIRGEN DE LA ARRIXACA (1); HOSPITAL UNIVERSITARIO
ABSTRACTS 79
NIÑO JESÚS (2)
Aims or goal: La ablación del haz espino-talámico lateral (AHET) es una técnica invasiva
utilizada para el control del dolor refractario actualmente en desuso.
Design, methods and approach: Presentamos un caso en el que la AHET fue la única medida
eficaz para controlar el dolor
Results: Mujer, 13 años, Neurofibromatosis tipo1 (NF1), hamartomas múltiples en sistema
nervioso central. Múltiples neurofibromas plexiformes dolorosos. Fijación dorsolumbar con 9
años. En RMN de control se detecta gran masa pélvica presacra y retrorectal que se extirpa
parcialmente. La anatomía patológica muestra tumor maligno de la vaina nerviosa. Se detectan
metástasis pulmonares en suelta de globos. La paciente presenta dolor de difícil control a
pesar de optimización de tratamiento analgésico y tratamiento adyuvante. Se coloca catéter
epidural con PCA sin control del dolor. Se realiza AHET (Nivel C1-C2) bajo control radiológico
y potenciales somatosensoriales. La intervención se realiza bajo anestesia general por poca
colaboración. Tras la intervención se observa disminución significativa de las puntuaciones
medias en la escala de dolor y de calidad de vida (EVA medio 7 ± 1,7 vs 4 ± 2,6 (p<0,001));
(Lansky Performance Scale 18,75±1.9 vs 29,44 ±2,8; p=0,004). Se pudo disminuir las dosis
de analgesia sistémica (60%). Como efecto indeseable se observó disestesia. A los 20 días de
la intervención presenta dolor en la pierna contralateral de muy difícil control por expansión
de la masa e insuficiencia respiratoria secundaria a metástasis. Se inicia sedación paliativa y
fallece en su domicilio a las 72 horas.
Conclusion/Lessons learned: La ablación del haz espinotalámico bajo control radiológico y
con potenciales somatosensoriales se presenta como una alternativa segura y eficaz para el
tratamiento del dolor refractario en pacientes pediátricos. El efecto indeseable más frecuente
descrito es la aparición de disestesia. No se han documentado lesiones de los haces motores
realizando la técnica bajo control radiológico.
71 - ACOMPAÑAMIENTO ESPIRITUAL CON TÉCNICAS NO FARMACOLÓGICAS EN JOVEN
PORTADORA DE SIDA AVANZADO
OREJAS DEL VALLE, Aurora | FRUMENTO, Graciela B. | STEED, Sonia Maria | LASCAR, Eulalia
EQUIPO DE CUIDADOS PALIATIVOS HOSPITAL DE NIÑOS DR. R. GUTIERREZ, CIUDAD DE
BUENOS AIRES. ARGENTINA.
Aims or goal: Compartir la experiencia de un modelo de acompañamiento espiritual a través
de la utilización de Técnicas No Farmacológicas.
Design, methods and approach: Se evaluaron 17 sesiones de TNF, a paciente femenina
(M), 21 años, con diagnostico de SIDA C3, transmisión vertical. Frecuentes internaciones hacia
el final de la vida Desnutrición. Severa falta de adherencia al tratamiento. NBI. Conflictos
familiares y sociales. Rol de cuidadora principal en la familia. Huérfana, conviviendo con tres
hermanos. Analfabeta. Difícil transición. Técnicas aplicadas: Visualización guiada Reiki Cuencos
Tibetanos, Masaje sonoro Diapasón Campana de Cuarzo Vibración de la voz.
Results: M. se mostró muy receptiva a cualquier tipo de técnica. La demanda de atensión surgía
de ella misma. Siempre expresaba agradecimiento. Enojo ante la interrupción de la sesión,
llegando incluso a “echar” al intruso. Expresaba luego de las intervenciones: “Me hace muy
bien...., mejor que los medicamentos” “me relaja y me ayuda a pensar” “Se siente lindo! Como
una caricia...” “No pienso cosas feas...me relajo y me alivia” Siempre mostró preocupación por
sus hermanos. Fracaso de transición. Las TNF facilitaron la expresión de sus sentimientos y
preguntarse sobre el futuro. Expresó su deseo de morir en el hospital, que era como su casa y
que allí nada le faltaba. No refirió miedo a la muerte, aunque siempre temía dejar desamparados
a sus hermanos. Se evidenció su eolución espiritual, a través de la aparición de valores como
agradecimiento, el deseo de cuidar a su entorno, y una inmensa generosidad.
Conclusion/Lessons learned: La aplicacción de TNF: Produjo bienestar y alivio. Demostró
alta adherencia. Facilitó la expresión de sentimientos, deseos y elecciones. Este modelo de
acompañamiento espiritual podría resultar muy beneficioso en enfermedades crónicas y
avanzadas, aunque más resultados son necesarios.
72 - PERFIL DEMOGRÁFICO SOCIOCULTURAL Y CLÍNICO DE NIÑOS Y ADOLESCENTES
EN ASISTENCIA DOMICILIARIA PALIATIVA ONCOLÓGICA
SANDRA ALVES, Sandra Alves Do Carmo(1) | GOMES, Glauciene Cavalcante(2) | OLIVEIRA,
Isabel Cristina Dos Santos(1) | JOSE, Sabrina Ayd Pereira(1) | NORONHA, Roberta Dantas Breia
De(2) | GOIS, Jakcilane Rosendo(2) | SOUSA, Luana Pinheiro(3)
UNIVERSIDADE FEDERAL DO RIO DE JANEIRO (1); INSTITUTO NACIONAL DE CÂNCER (2);
HOSPITAL DAS CLÍNICAS DE PERNAMBUCO (3)
Background: El cáncer infanto-juvenil, según el Instituto Nacional do Câncer (INCA/
Brasil), es considerado raro si comparado al total de casos registrados en adultos. Asimismo, el
cáncer infanto-juvenil presenta todavía alto índice de incidencia y mortalidad, constituyéndose
como la principal causa de muerte en niños con edad inferior a 15 años, alcanzando 10 en
cada 1.000.000 niños por ano en todo el mundo. A lo largo de este camino, se ha inserido
otro reto en la implementación de cuidados paliativos en la oncología pediátrica, la asistencia
domiciliaria, estrategia elegida por garantizar al paciente la asistencia en el ambiente familiar,
junto a amigos y objetos personales. Una buena estrategia relatada en la literatura científica
es la asistencia domiciliaria.
Aims: Describir el perfil demográfico sociocultural y clínico de niños y adolescentes con cáncer
en cuidados paliativos atendidos en domicilio
Methods: Método: Estudio descriptivo, retrospectivo, de naturaleza cuantitativa, realizado a
través de análisis documental entre mayo de 2011 y mayo de 2015.
Results: Fueron analizados 44 prontuarios médicos de pacientes pediátricos en asistencia
domiciliaria. El periodo de cuidados paliativos en domicilio variaba entre dos y cuatro años. El
Tumor de Tronco y Osteosarcoma fueron los diagnósticos relatados, no siendo observado en la
muestra ningún tumor hematológico. La edad de los pacientes varió entre 03 y 19 años, siendo la
promedia de 11 años. Los pacientes residían en su totalidad en barrios periféricos del municipio
de Rio de Janeiro – RJ/Brasil. La renta domiciliaria per cápita era inferior a dos salarios mínimos.
De esta muestra, emergieron los siguientes síntomas: fatiga; dolor; ansiedad; tristeza. La
fatiga ha sido controlada, siendo los demás síntomas solucionados, incluso la tristeza.
Conclusion/Discussion: El resultado observado confronta la literatura científica. Niños
y adolescentes han se sentido bien acogidos cuando próximos de sus objetos personales
estimados, amigos y familiares.
73 - CUIDADOS DE ENFERMERÍA PARA LOS SÍNTOMAS FÍSICOS, PSICOLÓGICOS
Y SOCIALES EN NIÑOS CON CÁNCER EN CUIDADOS PALIATIVOS: REVISIÓN
INTEGRADORA DE LA LITERATURA
SANDRA ALVES, Sandra Alves Do Carmo
INSTITUTO NACIONAL DE CÂNCER
Aims or goal: describir la producción científica en la evaluación de la enfermería y la gestión
de los síntomas más comunes que presentan los niños con cáncer en cuidados paliativos,
analizar el desempeño de la enfermería en la evaluación y el control de los síntomas.
Design, methods and approach: La metodología utilizada fue la revisión integradora de la
literatura. Para recoger la recolección de datos se realizó búsqueda electrónica, se seleccionaron
diez estudios.
Results: Los resultados indicaron que los principales síntomas físicos que surgieron de los
estudios fueron dolor, disnea, fatiga, estreñimiento y, síntomas como estudios psicológicos citar
la ansiedad y la depresión; enfatizar síntomas sociales, la supresión del entorno social debido
a las hospitalizaciones.
Conclusion/Lessons learned: Llegamos a la conclusión de que los niños con cáncer que
están asociados con la progresión de la enfermedad y se encuentran en cuidados paliativos,
es posible presentar varios síntomas que requieren atención de enfermería especializada para
identificar, intervenir, desarrollar de forma autónoma o en equipo, junto con el niño y su cuidado
sistemático de planificación familiar, proporcionando una mejor calidad de vida y una muerte
digna resultante.
74 - DREZOTOMIA: ALTERNATIVA PARA EL ALIVIO DEL DOLOR ONCOLOGICO DE
DIFÍCIL TRATAMIENTO EN PEDIATRÍA
GERM, Rosa | MANTESE, Beatriz | MENDEZ, Mercedes | NUÑEZ, Gabriela | PAGLIA, Marcela |
SASSI PRESTI, Maria Silvina | SCRIGNI, Adriana | VERNA, Rodolfo
ABSTRACTS 81
Background: EN PACIENTES CON ENFERMEDAD ONCOLOGICA TERMINAL, EL DOLOR ES EL
SÍNTOMA MÁS FRECUENTE, MUCHES VECES PUEDE SER CONTROLADO CON TRATAMIENTOS
INSTITUIDOS PARA SU ENFERMEDAD DE BASE Y CON FARMACOS PROPUESTOS POR LA OMS
(ANTIINFLAMATORIOS, OPIODES, ADYUVANTES). EL DOLOR NEUROPÁTICO PUEDE REQUERIR
PARA SU CONTROL DE MÉTODOS MÍNIMAMENTE INVASIVOS.
Aims: Mostrar a través de un caso clínico el alivio del dolor neuropático severo con la técnica
neuroquirúrgica “Drezotomía”, consiste en seccionar las raíces a nivel de la unión radiculomedular
e intramedular, interrumpiendo de las fibras nociceptivas y preservando las fibras táctiles
mediales y kinestésicas.
Methods: Paciente de 5 años con diagnóstico a los 6 meses de vida de Sarcoma de Ewing
lumbosacro paravertebral localizado con compromiso intrarraquídeo que requirió cirugía
descompresiva, quedando como secuela vejiga neurogénica y paresia de miembro inferior
derecho. Multiples recaidas locales. Progresión tumoral sin metástasis con incremento de dolor
que respondieron a QMT, RDT paliativa y medicación analgésica. Diciembre 2013 presenta
plexopatía lumbosacra con dolor severo, 2 a 3 crisis dolorosas por hora. Al no contar con
tratamiento curativo, recibir el mejor esquema analgésico posible sin alivio del dolor (escala de
caras modificada 10/10), se decide con neurocirugía realizar Drezotomía
Results: Externado a los 4 días del procedimiento quirúrgico, alivio del dolor de (ECM 2/10)
hasta su fallecimiento que ocurrió 2 meses posteriores sin nuevas secuelas neurológicas.
Conclusion/Discussion: La Drezotomía fue efectiva para el tratamiento del dolor neuropático
constituyendo un excelente recurso paliativo. Importante contemplar todas las opciones
terapéuticas para el alivio del dolor severo en estos pacientes e imprescindible un abordaje
interdisciplinario para resolver estas situaciones excepcionales.
75 - NURSING CARE FOR PAIN CONTROL IN CHILDREN WITH CANCER
ICHIKAWA, Carolliny Rossi de Faria(1) | CARVALHO, Andressa Fernandes Da Silva(2) | SILVA
SAMPAIO, Patricia Stella(1) | GUEDES, Adriana Cecel(2)
UNIVERSIDADE DE SÃO PAULO (1); UNIVERSIDADE PAULISTA - UNIP (2)
Aims or goal: The aim of this study is to identify scientific evidence related to nursing care in
pain management in a children with cancer.
Design, methods and approach: The methodology used was a study of integrative review
of scientific literature.To develop the study, 49 items available were found from 2002 to 2015.
Among them, 8 articles in full were selected and out of these 8 articles, Five corresponded to
the inclusion requirementes demanded by this study.
Results: These 5 articles report the pain scale and pharmacological measures as main ways
to control the child’s pain. Others methods were highlighted as emotional support and relief of
physical-emotional symptoms.
Conclusion/Lessons learned: Despite the scientific advances in understanding the
phenomenon of pain, nurses still have difficulties to incorporate in practice the pain assessment
and management in a systematic and continuous way. So, their body of knowledge in still in
construction process.
76 - BLENDING OFCBD/THC OIL IN PAIN &SYMPTOM MANAGEMENT IN PEDIATRIC
PALLIATIVE CARE
SINE, David
CPH & HINDS HOPSICE
Aims or goal: We will outline how we have utilized CBD & THC Blended Oils in Pain & Symptom
Management of Pediatric Palliative Care Pâtients. We will give examples where these oils can
Work alongside traditional medicines. We will also give examples where blended Oils have
allowed us to decrease and in some Cases eliminate the need for narcotics and Other traditional
medications (example anti- Convulsants).
Design, methods and approach: This will be a descriptive study based on the Use in 2 home
hospice programs as well As attempts to allow adjuvant therapy In the hospital setting. It will
describe the consult process and Manner in which we make it legal and safe on All levels with
coordination of care between Patient/family physician/pediatric pharmacist And home palliative
nurse case manager. It will describe actual cases with incorporation Of patient /parent accouts
as well as videos of Pre and post blend use age. The goal of this study is to expand non-narcotic
Options for treatment of pain & symptoms in the Pediatric Population & explore its potential use
In Developing Countries where narcotic and traditional Seizure medications may have limited
availability.
Results: The study is still active but we already have Clear evidence of various blends ability to
Treat pain and symptoms in the Pediatric palliative population. We have recently begun working
with Chemists in Colorado where there is more active research due to less legislative restrictions.
We are expecting to expand the use of blends and gain more insight into its effectiveness for
various symptoms including but not limited to Pain Nausea Insomnia Contractures Anorexia
Anxiety Seizures
Conclusion/Lessons learned: As stated we feel that CBD/THC blends have an actual and
an even greater potential use in treatment of Pain and various symptoms in children with life
limiting or Life threatening illnesses. We will propose a model from assessment of pain and
symptoms through to use of blends in a legal format.
77 - CONOCIENDO EL MANEJO DEL DOLOR EN UN SERVICIO DE PEDIATRIA; UN PUNTO
DE PARTIDA
URMAN, Gabriela(1) | URRESTARAZU, Paula(2) | BALLESTAS, Sandra Lucia(1) | DIAZ
RODRIGUEZ, Diana(1) | SUAREZ, Laura(1) | URMAN, Eduardo Jorge(3) | GROSMAN, Arnoldo(4)
UNIVERSIDAD MAIMONIDES- BUENOS AIRES (1); HOSPITAL ESPAÑOL DE BUENOS AIRES (2);
UNIVERSIDAD MAIMONIDES- HOSPITAL ESPAÑOL DE BUENOS AIRES (3); UNIVERSIDAD
MAIMONIDES- HOSPITAL ESPAÑOL DE BUENOS AIRES (4)
Background: El control del dolor representa calidad de atención.
Aims: Caracterizar el uso de analgesia postoperatoria y las creencias sobre el dolor en general
en un servicio de pediatría de un hospital de comunidad de la Ciudad de Buenos Aires.
Methods: Estudio transversal mediante encuestas a personal de salud del servicio y padres de
niños sanos, menores de 15 años operados en forma programada por primera vez. Se analizaron
las historias clínicas (HC) de internación de dichos pacientes y las indicaciones al alta.
Results: Se encuestaron 50 padres inmediatamente antes de la cirugía y 48 horas después
del alta. Sobre cómo reconocer el dolor, 84% indicó por el llanto y 76% por relato del niño.
Sólo el 38% estuvo en desacuerdo con que los niños suelen exagerar el dolor. Un 54% creía
que los analgésicos causan adicción. Del 80% que recibió indicaciones de analgesia al alta, un
50% la administró incorrectamente (fallas en dosis o intervalo). 76% pensaba que los niños
experimentarían dolor moderado a severo. 75 integrantes del equipo de salud respondieron la
encuesta. Se caracterizó por profesión, edad, sexo, años de ejercicio. Se encontró conocimiento
de las escalas de valoración con subutilizacíon. El 60,3% afirmó que los niños utilizan el dolor
para obtener compensaciones, 31% sostuvo que debe evitarse la morfina por su rápida tolerancia
y 69% aseveró que hay dolores que no pueden controlarse efectivamente. Un 25,3% nunca
ha usado métodos no farmacológicos. De las 78 HC, 20 no mencionaban “dolor” en primer día
postoperatorio, 42 referían “buen manejo” o “tolerancia” del dolor y en 16 se caracterizaba
según intensidad. 65% de los pacientes recibieron analgesia con dipirona sola o en asociación.
Conclusion/Discussion: El estudio evidenció errores conceptuales. La sumatoria de miradas
sobre padres, profesionales e HC permitió asumir un punto de partida para implementar una
nueva política institucional de manejo del dolor.
78 - THE DIAGNOSIS OF LETHAL FETAL MALFORMATION AND TERM PREGNANCY:
IMPLEMENTATION OF PALLIATIVE CARE SERVICE IN FETAL MEDICINE AND PROPOSAL
OF A MODEL FOR FOLLOW UP. GAI- GROUP OF STUDY ON PERINATAL PALLIATIVE
CARE
BERNARDES, Lisandra Stein(1) | BENUTE, Glaucia Rosana Guerra(2) | GIBELLI, Maria
Augusta Bento Cicaroni(3) | NASCIMENTO, Nathalia Bertolassi(4) | BARBOSA, Tercilia Virginia
Aparecida(5) | GOMES, Ana Lucia(2) | KREBS, Vera(3) | FRANCISCO, Rossana P V(1)
PAULO, BRAZIL (2); DEPARTMENT OF PEDIATRICS, CLINICS HOSPITAL, UNIVERSITY OF SÃO
ABSTRACTS 83
Background: There is a lack in literature describing specialized services in fetal medicine
palliative care.
Aims: To describe the implementation of palliative care in fetal medicine service and to propose
an integrative final model of follow up.
Methods: Multiprofessional team in obstetric and neonatology was formed. All members had at
least 3 years of experience with fetal medicine and neonatology (minimal 3 years – maximal 20
years). Initially, literature review in PubMed, Lilacs, Medline, Psychoinfo was performed. Eight
meetings were held, once a week, to discuss the initial program format. Fifteen families were
initially followed using this format. After that, nominal group technique was used to propose a
semi-standardized final model of follow up.
Results: We included in the program families whose mothers were diagnosed with lethal and
high-mortality fetal malformation. All consultations were performed by at least two members
of the team. Consultations started on may 2015. The final model of follow up proposes four
prenatal consultations with the identification of suffering causes, discussion of values, goals of
care, family and religiosity with the shared construction of a birth plan. The specific objectives
of each consultation in the final model are described.
Conclusion/Discussion: The implementation was successful. The final model proposed may
allow prenatal palliative care teams to better approach families with lethal or high-mortality
fetal malformations.
79 - MULTIDIMENSIONAL EVALUATION OF SUFFERING IN PRENATAL PALLIATIVE
CARE – THE PERSPECTIVE OF HEALTH PROFESSIONALS FROM A MULTIDISCIPLINARY
TEAM. GAI - GROUP OF STUDY ON PERINATAL PALLIATIVE CARE
BERNARDES, Lisandra Stein(1) | BENUTE, Glaucia Rosana Guerra(2) | GIBELLI, Maria Augusta
Bento Cicaroni(3) | NASCIMENTO, Nathalia Bertolassi(4) | BARBOSA, Tercilia Virginia Aprecida(5)
| GOMES, Ana Lucia(2) | KREBS, Vera Lucia Jornada(3) | FRANCISCO, Rossana P V(1)
Background: Multidimensional evaluation of suffering is a key concept of palliative care. The
diagnosis of a potentially lethal fetal malformation lead families through a long path of different
suffering causes, and there are few articles describing such causes.
Aims: Describe the health professionals’ perspectives on the multidimensional evaluation of
suffering causes of families carrying a baby with prenatal diagnosis of a potentially lethal
malformation.
Methods: A group of six health professionals with different backgrounds and with a large
experience(3 to 20 years) in working with women and families with fetal malformation met three
times aiming to discuss possible suffering causes in women and families in this situation. The
nominal group technique was used to construct a final multidimensional diagram of suffering in
the four different aspects: physical, social/familiar, psychological and spiritual.
Results: The main suffering causes identified by the team were discussed and a final diagram
was proposed, with who the patient (the pregnant women and the family) is, the main suffering
causes identified and the actions the team may propose in order to minimize it. The team
perception was counterposed with the suffering causes of the first two patients followed by our
perinatal palliative care service.
Conclusion/Discussion: It was possible to construct a multidimensional diagram of suffering
causes. This diagram may help health professionals working with perinatal palliative care to
better identify suffering in those families.
80 - PREGNANCY, DIAGNOSIS OF FETAL LETHALITY AND BOND CONSTRUCTION: CASE
STUDY. GAI - GROUP OF STUDY ON PERINATAL PALLIATIVE CARE
BENUTE, Glaucia Rosana Guerra(1) | BERNARDES, Lisandra Stein(2) | ANDRESA, Vilhegas(1) |
MARJORI, Fantin(1) | GIBELLI, Maria Augusta Bento Cicaroni(3) | KREBS, Vera Lucia Jornada(3)
| LUCIA, Mara Cristina Souza De(1) | FRANCISCO, Rossana P V(2)
DIVISION OF PSYCHOLOGY, CLINICS HOSPITAL, UNIVERSITY OF SÃO PAULO, SÃO PAULO,
BRAZIL (1); DEPARTMENT OF OBSTETRICS AND GYNECOLOGY, UNIVERSITY OF SÃO PAULO,
SÃO PAULO, BRAZIL (2); DEPARTMENT OF PEDIATRICS, CLINICS HOSPITAL, UNIVERSITY OF
SÃO PAULO, SÃO PAULO, BRAZIL (3)
Background: After the diagnosis of lethal fetal malformation it is natural the appearance of
defense mechanisms that makes difficult to form bond due the fear of the suffering for the baby
loss.
Aims: Describe the experience of a couple who participated in Fetal Medicine Palliative Care
Group.
Methods: Case study, which had nine appointments conducted during pregnancy and ten on
postpartum.
Results: Initially the difficulty to accept the diagnosis of lethality aroused feelings of inadequacy,
low self-esteem and loss of future perspective. During the appointments, the couple reflected
on the limited possibilities of the maternity/paternity process in fatality situations. The grieving
process of the healthy son was initiated and acceptance of the begotten started to take shape.
With the sadness of the finitude the couple realized that they would be father and mother during
the time that this relationship would exist. Decision to formalize birth plan and desires to take
the baby in the arms after birth, even if he was death, took shape. Striking balance between
understanding the diagnosis and bond was observed, since the couple did not buy furniture or
personal objects to the fetus, but talked with the son in the womb, named and talked to him
about the disease, the sadness of losing him at the same time the joy to be able to share a few
moments of their lives with him. After birth, they cried and suffered the loss, but contemplated
the greatness of motherhood and fatherhood.
Conclusion/Discussion: Bond can be established and experienced with generated son. The
finitude is a natural process of life, and that allows the complete experience of some situations
ranging from birth, pass through the love and end at death.
81 - MULTISDISCIPLINARY TEAM PROGNOSTICATION IN PRENATAL PALLIATIVE
CARE: CASE REPORT AND REVIEW OF LITERATURE. GAI - GROUP OF STUDY ON
PERINATAL PALLIATIVE CARE
OLIVEIRA, Fernanda Figueiredo De(1) | BERNARDES, Lisandra Stein(1) | BENUTE, Glaucia Rosana
Guerra(2) | GIBELLI, Maria Augusta Bento Cicaroni(3) | NASCIMENTO, Nathalia Bertolassi(4) |
BARBOSA, Tercilia Virginia Aparecida(5) | KREBS, Vera Lucia Jornada(3) | FRANCISCO, Rossana
P V(1)
Background: Adequate prognostication is essential in palliative care.
Aims: To describe a case in which a multidisciplinary approach allowed a better prognostication
in our prenatal palliative care group.
Methods: Case report.
Results: A primigravida was referred to our center due to fetal hydrops at 27 gestational
weeks. Tricuspid atresia with intense heart failure (huhtah score 2/10) and trisomy 21 were
diagnosed, which does not justify abortion in our country. Since heart failure was intense there
was a high risk of intra-uterine death (IUD). Since parents’ goals of care were to try c-section
and ICU to see neonatal response, the timing of birth considering neonatal versus intra-uterine
risks needed to be evaluated. Multidisciplinary discussion (pediatrics, cardiology, cardio surgery
and obstetrics) estimated neonatal mortality near 100% at that time. A flow chart for medical
decision concerning this case was constructed by the team, which included to consider birth
only if the fetus went through 34 weeks alive. Medical perceptions were discussed with parents,
which agreed not to perform fetal monitoring until 34 weeks. At 34 weeks fetal monitoring was
started and fetal heart showed patterns of fetal distress. A c-section was performed with initital
reanimation. There was no neonatal response, but parents had the opportunity to stay with
their baby throughout the process of death.
Conclusion/Discussion: In this case multidisciplinary team prognostication allowed the health
ABSTRACTS 85
care team to better counsel the family.
82 - CONJOINED TWINS UNITED BY THE HEART: CASE REPORT OF A PERINATAL
PALLIATIVE CARE APPROACH. GAI- GROUP OF STUDY ON PERINATAL PALLIATIVE CARE
Stein(3) | BENUTE, Glaucia Guerra(4) | BARBOSA, Tercilia(5) | BERTOLASSI, Nathalia(6) |
PAULO, SÃO PAULO, BRAZIL (3); 3DIVISION OF PSYCHOLOGY, CLINICS HOSPITAL, UNIVERSITY
OF SÃO PAULO, SÃO PAULO, BRAZIL (4); DIVISION OF SOCIAL WORKER, CLINICS HOSPITAL,
UNIVERSITY OF SÃO PAULO (5); NURSE DIVISION, CLINICS HOSPITAL, UNIVERSITY OF SÃO
PAULO (6)
Background: The diagnosis of conjoined twins united by the heart is a lethal situation.
Sometimes, for personal beliefs or legal impossibility to interrupt the pregnancy, parents have
to cope with a longer pregnancy and give birth near term. Perinatal palliative care may help
parents to make active decisions on the time they spend with their baby.
Aims: To describe the care offered to a patient pregnant with conjoined twins united by heart
that came to our Perinatal Palliative Care group with 26 weeks of gestational age.
Methods: case report
Results: A pregnant women with conjoined twins united by the heart had 4 prenatal appointments.
We discussed the poor prognosis of the children. A birth plan including the obstetrical indication
of the way of delivery, memory creation, religious aspects, important persons to be present at
birth was created with the family. In the conferences, the death of the babies was discussed,
and she wanted to hold the children until the last moment. She was catholic so she asked for
the baptism of the girls. The chaplain was present with the family in the birth room, which
allowed the baptism to be performed minutes after birth. The babies lived for about an hour and
died in their parents’ arms. In the post-natal conference she declared that“everything occurred
in the best way and she was glad to have had the chance of saying goodbye”.
Conclusion/Discussion: All the prenatal care offered to the family before the birth allowed
them to cope with the mourning and grief and also to create a “box of memories” about this
moment in their lives.
83 - CARING FOR FAMILY WHEN A NEWBORN DIES: A REFLECTION FROM THE
PERSPECTIVE OF THE COMPLEXITY THEORY
ICHIKAWA, Carolliny Rossi de Faria | SA, Natalia Nigro | SAMPAIO, Patrícia Stella Silva | MISKO,
Maira Deguer | SALIM, Natália Rejane | BOUSSO, Regina Szylit
Background: Caring for the family at the newborn’s end of life stage is configured in a delicate
context of extreme sensitivity and requires specific skills of health care professionals.
Aims: This theoretical and philosophical essay aimed to reflect on the care given to the family
before the neonatal loss.
Methods: Edgar Morin´s Complexity Theory was used as basis for this reflection.
Results: To take care of the family that experienced a neonatal loss requires breaking with
simplified ways of viewing reality in order to search for a more complex understanding.
Therefore, this theoretical and philosophical reflection approaches the practice of family care
suffering a neonatal loss to the assumptions of the complexity of Edgar Morin. To articulate
the complexity and neonatal loss is necessary to understand the care as something that goes
beyond, offered fully, steeped in scientific knowledge and accepting the influences suffered by
the family, through their relationships with others and within its members. It is a care without
prejudices and judgments in order to understand the individual / family as a unique, complete
and complex.
Conclusion/Discussion: Caring for the family at the newborn’s end of life stage is configured in
a delicate context of extreme sensitivity and requires specific skills of health care professionals.
The neonatal loss phenomenon involves multiple dimensions in family life that goes through
this experience. Thus, the improvement of care aims to contribute to better understanding of
this moment in family life and consequently encourage the development of actions with which
health professionals can assist the care to these families. The issues examined in this essay may
support the reflection and practice of health professionals, seeking for better understanding
of the family system as a whole without fragmenting reality experienced by these families,
breaking with the simplified view and allowing a closer understanding of this reality.
84 - PREVENTION OF COMPLICATED GRIEF: UNDERSTANDING THE EXPERIENCE OF
PARENTS OF NEWBORNS IN RELATION TO CARE AT END OF LIFE SITUATION
SALIM, Natália | SILVA SAMPAIO, Patrícia Stella | NAVARRO SILVA, Isabella | MISKO, Maira
Deguer | SZYLIT, Regina
UNIVERSITY OF SÃO PAULO
Background: The birth is an event that marks the threshold of a new time in the course of
life of society and initiates the construction of a new history. It is surrounded by expectations,
projects, desires and plans. However, death is a fact that can happen in early life. Because of
that, it is important to bring to the care scene, both in theoretical and practical spheres, factors
and complexities that are involved in the grieving process at this stage.
Aims: To understand the parents’ experiences of hospitalized babies in Neonatal Intensive Care
Unit (NICU) in relation to care in situations of end of life.
Methods: This is a qualitative study that is in progress and has as theoretical reference: Symbolic
Interaction and as methodological reference: Grounded Theory. Six families of newborns at the
end of life attended in the study. The semi-open interviews and observation are being used as
techniques of data collection.
Results: Preliminary results show parents’ preferences in relation to child care; forms of
parental participation in the decision-making process and the relationship with the health team.
Conclusion/Discussion: Daily, parents are confronted with challenges in the exercise of their
roles in face of the sick baby and the relationship with professionals. The decision-making
process is complex and the possibility of parents’ participation is restricted. It is essential
to listen to the parents who have their babies admitted to NICU to understand the process
of care at the end of life. It is very important to know how the relationships with healthcare
professionals happen, which meanings the family gives to the interactions that occur during this
process, as well as their preferences, can strengthen basic concepts and be used in different
theories and work to prevent complicated grief with the family.
85 - THE NEONATAL INTENSIVE CARE NURSE AND THE NEWBORN´S CARE IN END OF
LIFE: AN INTEGRATIVE REVIEW
SILVA SAMPAIO, Patricia Stella(1) | MISKO, Maira Deguer(2) | SALIM, Natália Rejane(1) |
ICHIKAWA, Carolliny Rossi de Faria(1) | SA, Natalia Nigro(1) | BOUSSO, Regina Szylit(1) |
SILVA, Isabella Navarro(1) | BRAZ, Stefanie de Brito(3)
UNIVERSIDADE DE SÃO PAULO (1); UNIVERSIDADE FEDERAL DE SÃO CARLOS (2);
UNIVERSIDADE FEDERAL DE SÃO CARLOS (3)
Aims or goal: To seek for scientific evidence in literature that address the work of nurses in a
neonatal intensive care unit with the newborn in the end of life stage.
Design, methods and approach: This integrative review of literature was conducted in the
databases of PubMed, CINAHL and Scopus, within the period from 2005 to 2015, with the
crossing of the descriptors: Nursing - Family - End of life - Neonatal ICU. The inclusion criteria
were: provision of full text, english, portuguese and spanish. The search has identified 19
articles and after successive readings, sixteen were selected by correspond to the theme.
Results: The analysis of 16 studies allowed the construction of four themes: Fluctuating between
life and death; Recognizing the difficulties in the process of taking care of the newborn in end
of life; Living with moral suffering; Needing to take care of the bereaved families. The literature
points out that the nurses reported unpreparedness, suffering and impotence to deal with the
newborn in end of life and its family. The continuity or indication of treatments characterized
as prolonged, aggressive and even futile was one of the causes for the moral suffering placed
in these nurses.
ABSTRACTS 87
Conclusion/Lessons learned: Thus, it is perceived that, even death being an event very
common in daily nursing, there is difficulty of professionals, not only to accept, but also on
how to handle the situation regarding end of life of newborn and its family. This review points
out the importance of thinking and proposing nursing training models which include objectives
and contents aiming to enable nurses to integral care of newborns in the end of life and their
families.
DAY 3 - SATURDAY 21 MAY
DÍA 3 - 21 SÁBADO DE MAYO
86 - INTENSIVE CARE UNITS OF PEDIATRIC NURSES: EXPERIENCING MORAL DISTRESS
IN SITUATIONS OF END OF LIFE (TOP 10)
BALIZA, Michelle | BOUSSO, Regina | SANTOS, Maiara | MISKO, Maira | SAMPAIO, Patricia |
ICHIKAWA, Carolliny | BORGHI, Camila | SÁ, Natália
Background: The moral suffering can be represented as a consequence of the process of
monitoring the patient and the family in situations of end of life. The influence of different
cultural and moral values of each professional leads to differences in decision-making and can
cause distress. Suffering repeated experiences of moral distress due to applications of futility
reflects on family care negatively and increases the nurses´ burnout.
Aims: To understand the moral distress of the pediatrics ICU nurses in end-of-life situations.
Methods: Qualitative health research and interpretive descriptive study. Data were collected
using semi-structured interviews with 10 nurses from the ICU pediatrics from São Paulo. This
study used thematic analysis with an inductive approach. This analysis is a method for identifying
themes and developing codes and patterns linked to the data. This method is suitable for
researchers without a theoretical framework for deductive analysis.
Results: The inductive thematic analysis made it possible to identify six main themes: The
process of ethical decision-making in end-of-life situations; futile therapy; blurring of palliative
care/uncertainties prognostic; suffering with the family; not knowing how to deal with family
members who have a child in end-of-life situation and conflict between the teams.
Conclusion/Discussion: The moral distress can be represented as a consequence of the
process of monitoring the children and their families in situations of end-of-life. The influence
of different cultural and moral values of each professional leads to differences in decisionmaking and may cause anguish. There are barriers to this care, which in turn contributes to
their frustrations. These obstacles include lack of involvement in the care plan; the potential
conflict between the medical staff and nursing educational models; cases of futile therapy and
unnecessary suffering that lead to moral distress of these professionals.
87 - CUANDO LOS PADRES NO ACUERDAN CON LA DECISIÓN DE ADECUACIÓN DE
ESFUERZO TERAPÉUTICO (AET) (TOP 10)
CHACON, Maria Sandra | JOSOVIC, Gabriela Silvia
HOSPITAL PROVINCIAL NEUQUEN
Background: Las situaciones de muerte intervenida en los niños nos genera interrogantes en
cuanto al proceso de toma de decisiones con las familias. Esto nos llevó a analizar las causas
de rechazo de AET
Aims: Determinar, en los casos en que no se acepto la AET, los factores de riesgo de esta
negativa. Se evalúan las medidas ofrecidas en cada caso, edad, género y grupo del paciente
según la ACT Asociation for Children with Life trheatening Terminal Conditions
Methods: Análisis retrospectivo de datos de estadísticas en Excell 2010, de 50 pacientes
fallecidos, en que se planteo la necesidad de adecuación de esfuerzo terapéutico, en el periodo
2011 al 2015 inclusive.
Results: El 20% de los fallecidos (10 casos), no acepto la AET. Se observa que de estos,
50% (5 niños) pertenece a instituciones privadas o a mas de 400 km, donde carecen de
personal capacitado en Cuidados Paliativos. En estos, el contacto era telefónico con el médico
de cabecera. El otro 50% (5 niños) eran asistidos por nuestro equipo, ya sea en consultorio,
internación o domicilio, por un tiempo variable (de 1 semana a 2 años de seguimiento) El 50%
de los niños y las familias tienen intervenciones judiciales. En 3 de los casos no se pudo trabajar
adecuadamente con la familia ya que en un caso los padres rechazaron los cuidados paliativos,
en otro el contacto solo fue telefónico con el médico de cabecera y en otro fue una derivación
muy tardía. En el resto la familia consensuo en las entrevistas pero luego cambiaron de opinión.
Fallecieron en la terapia intensiva en ARM, o se les realizaron maniobras de reanimación en
guardia al 80% de los pacientes.
Conclusion/Discussion: En nuestra unidad, se observan dos factores que podrían considerarse
influyentes para la no aceptación de AET, los casos que son intervenidos judicialmente y aquellos
que no tenían seguimiento por un equipo de cuidados paliativos.
88 - HERRAMIENTAS PARA EL ABORDAJE DE DUELO EN LA ESCUELA (TOP 10)
COLOMBO PAZ, Guadalupe | GUARESTI, Germán | NESPRAL, Alejandro
HOSPITAL ZONAL BARILOCHE
Aims or goal: Las experiencias de duelo en el ámbito escolar son frecuentes. Estas situaciones
pueden impactar potencialmente en toda la comunidad educativa (niños, docentes, directivos y
familias). Las escuelas, en general, no cuentan con dispositivos los suficientemente capacitados
para dar respuesta a esta necesidad. Los objetivos de este taller fue brindar herramientas para
el abordaje de situaciones de duelo en el marco escolar a docentes de nivel primario, favorecer
la inclusión del tema duelo/muerte como eje temático y generar un dispositivo interdisciplinario
de abordaje de estas situaciones.
Design, methods and approach: Se realizaron talleres de capacitación en escuelas públicas
de nivel primario en la Ciudad de Bariloche de abordaje de situaciones de duelo en el ámbito
escolar.
Results: Participaron 122 docentes (10 escuelas). Se realizó una encuesta pre y post taller.
La encuesta pre taller mostró que el 79% asignó una importancia moderada/alta a estar
capacitado en el tema y que el 5% dijo haber recibido capacitación previa. El 42% percibió las
situaciones de duelo como de relativo a bastante frecuente. El 74% considera que el abordaje
de estas situaciones correspondería a la escuela. El 46% dijo estar poco o nada seguro de
poder dar respuesta a una situación así. En cuanto al taller se indagó (escala 1-10) cantidad
de herramientas recibidas (8,8) y valoración general del taller (9,6). El 27% detectó barreras
para la implementación de herramientas y conocimientos adquiridos. El 19% aceptó haber
modificado uno o más mitos en relación al tema. Una amplia mayoría (99%) dijo que luego
del taller podrían modificar su práctica laboral. Se recibieron consultas de 6 escuelas para el
abordaje en terreno de situaciones de duelo durante el período 2015.
Conclusion/Lessons learned: La prevalencia de situaciones de duelo en la escuela es alta. La
formación específica en el tema por parte de las escuelas es insuficiente y el interés por recibir
capacitación es alto. Acompañar a un niño en duelo puede convertirse en una oportunidad
preventiva, asistencial y/o educativa.
La prevalencia de situaciones de duelo en la escuela es alta. La formación específica en el tema
por parte de las escuelas es insuficiente y el interés por recibir capacitación es alto. Acompañar
a un niño en duelo puede convertirse en una oportunidad preventiva, asistencial y/o educativa.
89 - NEEDS OF THE PAEDIATRIC HEALTH CARE PROFESSIONALS IN TERMINAL WEANING
(TOP 10)
JAN, Kai-ling
TAINAN, TAIWAN. NATIONAL CHENG KUNG UNIVERSITY (NCKU) HOSPITAL
Aims or goal: To describe the needs of paediatric health care professionals in providing terminal
weaning to dying children.
Design, methods and approach: Case Study
Results: The dying child is a 16 y/o girl, just diagnosis anaplastic ependymoma (WHO grade
III) in June 2015. After in-hospital cardiac arrest due to obstructive hydrocephalus, her brain
is dead. PICU health care professionals call for help in end-of-life life-sustaining treatment
decision making. The palliative team was consulted. We provided terminal illness confirmed
by 2 physicians, care plan about avoid inappropriate interventions, predict life expectancy,
parent’s informed consent and bereavement care. Parents focused on the relief of suffering. We
provided pre, during and after extubation medication to avoid child suffering. When weaning
day’s morning (October 11), her parents saw the girl’s birthday photograph (before IHCA 3
ABSTRACTS 89
weeks ago) prepare by nurses, life review about the girl told by her parents. The kindness
girl love each one, help her classmate in order to escape bullying. All of this was told by her
classmate, remind us how short her life is, but meaningful she was. The girl died after 26 minutes
of life-sustaining treatment cessation with peace. 2 weeks later, in PICU nurse’s bereavement
groups they shared about end-of-life life sustaining intervention decisions making still lack of
experience, worry about how to do a good care, especially in ethics and the law issue. They
need a multidisciplinary team work with. The families’ grief support is a challenge too.
Conclusion/Lessons learned: Children’s terminal weaning decision is a challenge in achieving
quality of dying (good death), need multidisciplinary cooperation to honor patient best interest.
The results of this patient suggest refine the curriculum for health care professionals in making
end-of-life decisions, and make recommendations to develop specific policies in the medical
team.
90 - ROLE OF SPEECH- LANGUAGE PATHOLOGIST IN NON-CANCER PATIENTS OF
BONFIM, Danielle | BARBOSA, Silvia | NASCIMENTO, Andréa | POLASTRINI, Rita | BEFI-LOPES,
Débora
Background: In a high complexity pediatric hospital, the ambulatory of Pain and Palliative
Care attends rares pathologies like Epidermolysis Bullosa, Fibromyalgia, Ichthyosis and others,
with multi-professional team. A few studies have shown about the work of SLP with non-cancer
patients.
Aims: Describes the demand of evaluation and intervention of speech - language pathologist
(SLP) with non-cancer patients of a palliative care ambulatory.
Methods: Retrospective and observational study, including patients with medical care provided
from April to October 2015, aged 6 months to 17 years. The data included: number of patients
with demand for evaluation and intervention of SLP, before medical request; main route of
feeding and complaints or swallowing alterations in those patients.
Results: 256 medical attendances were performed in 128 patients during the period under
review. Of these, 40% (51) are carriers of EB and 60% (77) have other distinct changes.
Detected SLP demand related to food complaints and changes in orofacial myofunctional system
in 84% (43) of patients with EB and 45% (35) of the patients classified in other pathologies.
Main supply route found: oral intake 100% (51) patients with EB and 80% (62) in the other
pathologies. Of these, 20% (15) have gastrostomy.
Conclusion/Discussion: Considering the changes in EB patients like esophageal strictures
and changes of orofacial myofunctional system, SLP and Nutritionist can provide adaptation of
diet with adequate consistency, for oropharyngeal safety and better acceptance of food. The
literature indicates SLP demand for cancer patients, making the palliative care’s focus to this
population. With the findings of this study, we can conclude that there is demand related to
feeding and orofacial myofunctional system also in non-cancer population, making SLP essential
in this area and encouraging new research about it.
91 - DECISION MAKING PROCESS OF CHILDREN´S PARENTS IN PALLIATIVE CARE
(TOP 10)
MISKO, Maira Deguer(1) | BOUSSO, Regina Szylit(2) | SANTOS, Maiara Rodrigues(3) | SILVA,
Lucía(2) | SAMPAIO, Patrícia Stella Silva(2) | SALIM, Natalia Rejane(2) | ICHIKAWA, Carolliny
Rossi de Faria(2) | BALIZA, Michelle Freire(4)
UNIVERSIDADE FEDERAL DE SÃO CARLOS (1); UNIVERSIDADE DE SÃO PAULO (2);
UNIVERSIDADE DE SÃO PAULO (3); UNIVERSIDADE DE SÃO PAULO (4)
Background: Changes related to the decision making of parents with children in palliative
care at the hospital have been reported in the literature, emphasizing the active role of parents
and professionals in sharing information. Professionals are unprepared to deal with the dying
process and parental involvement in decisions is important for the care provided and for the
family´s future.
Aims: This study aimed to understand the experience of parents with children in palliative care
about the decision making process in the hospital.
Methods: This is a qualitative study using Symbolic Interactionism and Grounded Theory as
theoretical and methodological framework. Data collection was performed in a pediatric hospital
in Sao Paulo, through active observation, hospital records and semi-structured interviews with
12 parents who had their children hospitalized during the data collection period in palliative care.
The interviews were recorded and transcribed. Data was analyzed following the procedures of
the Grounded Theory.
Results: After the theoretical saturation has been reached, it was proposed a theoretical model
to explain the decision making process of parents with children in palliative care by the core
category: Being good for my son is being good to me, and the following categories: being scary,
recognizing that everything is being done for the child, needing information, deciding about
the participation in decision-making, having faith and hope, valuing a relationship of trust with
health providers.
Conclusion/Discussion: The results indicate that parents’ experience in decision-making is
related to individual preferences and the relationship with the health care team, allowing them
to trust some decisions to physicians and to play an active role as child’s advocate. Ensuring
family care, from what parents consider good for their child, allows nurses to guarantee the
active role of parents in the decision-making process.
92 - UN ADOLESCENTE CON CÁNCER. DUELOS EN LA SALUD Y EN LA ENFERMEDAD. A
PROPÓSITO DE UN CASO (TOP 10)
PALUMBO, Carolina | SASSI PRESTI, Silvina | VERNA, Rodolfo | LATELLA, Antonio | SAMPOR,
Claudia | SALVIA, Lucia | ENF. MENDEZ, Mercedes | LIC. NUÑEZ, Gabriela
Aims or goal: La atención de pacientes adolescentes con enfermedad oncológica avanzada
supone un gran desafío para el equipo de salud. El abordaje de los aspectos físicos, psicológicos,
sociales y espirituales durante esta etapa del desarrollo se dificulta por la presencia de una
enfermedad limitante para la vida.
Design, methods and approach: Paciente de 15 años, sexo masculino, con diagnóstico de
tumor maligno de la vaina nerviosa (Schwannoma Maligno) de localización sacra, con progresión
local y posterior diseminación leptome-níngea. Permaneció internado durante la mayor parte de
la trayectoria de la enfermedad, desde el diagnóstico hasta su muerte. La morbilidad producida
por la propia enfermedad y sus tratamientos generó la pérdida de la indepen-dencia, cambios
en la imagen corporal, en las creencias religiosas, afectación de la relación con sus pares y
sufri-miento espiritual. El equipo tratante integrado por los Servicios de Clínica Pediátrica,
Oncología, Cuidados Paliativos y Salud Mental debió trabajar de manera interdisciplinaria, con
la utilización de terapias farmacológicas y no farmaco-lógicas, adaptándose a los desafíos que
fueron surgiendo a lo largo de la atención.
Results: El trabajo interdisciplinario favoreció la mirada integral del paciente. Se logró un
adecuado control de los síntomas, se facilitó la comunicación con su familia y se atenuó el
sufrimiento espiritual.
Conclusion/Lessons learned: La complejidad de la atención de un adolescente con enfermedad
oncológica avan-zada demanda al equipo de salud conocer las características particulares de
esta etapa y de qué manera se ven afectadas por la enfermedad. El abordaje interdisciplinario
es una herramienta fundamental de la atención integral del paciente que permite dar respuesta
a algunas de sus necesidades.
La complejidad de la atención de un adolescente con enfermedad oncológica avanzada demanda
al equipo de salud conocer las características particulares de esta etapa y de qué manera se ven
afectadas por la enfermedad. El abordaje interdisciplinario es una herramienta fundamental de
la atención integral del paciente que permite dar res-puesta a algunas de sus necesidades.
93 - “FAMILY CAMPS”. AN INTERDISCIPLINARY INITIATIVE IN CHILDREN’S
BROWN, Anna | HARTNETT, Michelle
LAURALYNN CHILDREN’S HOSPICE
Aims or goal: Lauralynn, Ireland’s only children’s hospice supports children with life limiting
ABSTRACTS 91
and palliative care needs nationally. These children and their families can be excluded from
social, play and holiday activities due to the fluctuating and complex symptoms the children
present with. Most are dependent on medical equipment and require 24 hour nursing support.
Opportunity for family memory making is often limited to care based tasks and social isolation is
a reported difficulty, particularly for those from rural communities. This led to the development
of “family camps”. Camps formulated in conjunction with the individual families, to allow for a
variety of activities on site, that enable parents, children and siblings to be together as brother,
sister, son, daughter and friend, without medical constraints.
Design, methods and approach: An occupational therapist and play specialist with facilitation
from nursing and the multi-disciplinary team ran 6 family camp programs of 3 days in duration,
in a children’s hospice setting. A total of twenty families availed of this service over a two
year period. Camps followed a schedule of parent, sibling, child and family workshops that
were individualized to each family unit and included therapeutic sessions. Qualitative data was
collected using a post camp family survey.
Results: Survey feedback was received from 100% of participants. All acknowledged the
value of “normal family experiences”, such as a holiday. They reported the camp provided the
opportunity for social network development and play and interaction with each other that is
inclusive. Camp also enabled positive memory curation exclusive of care based tasks. Support
from nursing and MDT is essential.
Conclusion/Lessons learned: Family camps have a positive impact on the family unit.
Opportunity for play and social activities that encompass the whole
94 - TECNOLOGÍA COMO HERRAMIENTA FACILITADORA DE LA COMUNICACIÓN EN EL
PROCESO DE CUIDADOS PALIATIVOS ONCOLÓGICO-PEDIÁTRICOS EN LA ATENCIÓN
DOMICILIARIA (TOP 10)
JOSÉ, Sabrina Ayd Pereira(1) | CARMO, Sandra Alves Do(2) | OLIVEIRA, Isabel Cristina Dos
Santos(1) | SILVA, Ítalo Rodolfo(1) | NAZARETH, Ísis Vanessa(1) | GOIS, Jakcilane Rosendo(2)
| NORONHA, Roberta Dantas Breia De(2)
UNIVERSIDADE FEDERAL DO RIO DE JANEIRO (1); INSTITUTO NACIONAL DE CÂNCER (2)
Aims or goal: A partir de la evolución científico-tecnológica, dispositivos tecnológicos de
comunicación fueron incorporados a los servicios de atención domiciliaria, fortificando las
relaciones entre los profesionales, los niños y sus familias. Objetivo: Describir la experiencia de la
utilización de dispositivos tecnológicos de comunicación entre padres, cuidadores y profesionales
en el contexto de la atención al niño que necesita de cuidados paliativos oncológicos.
Design, methods and approach: Estudio descriptivo, del tipo relato de experiencia, realizado
en una Unidad de Cuidados Paliativos Oncológicos de un hospital público federal del municipio
de Rio de Janeiro entre enero de 2013 y mayo de 2015. Fueron desarrolladas orientaciones
educativas y clínicas para los padres y cuidadores para promover la mejoría de las condiciones
de vida del niño con cáncer avanzado, manteniendo al paciente en su ambiente domiciliar.
Results: En el modelo de asistencia domiciliaria pediátrica para la atención paliativa oncológica,
presentase como herramienta facilitadora de la comunicación los dispositivos móviles
denominados Aplicativo Asistencial de Mensajes Web. Orientaciones para la administración
de medicinas, técnicas de procedimientos en domicilio, dieta nutricional y estado clínico del
paciente fueron identificados como preguntas frecuentes a los profesionales con el fin de
solucionar dudas y auxiliar los padres y cuidadores en la solución de problemas en domicilio.
Conclusion/Lessons learned: La presencia o difusión de tecnologías de la información son
componentes-clave para garantizar la calidad de los cuidados de salud, una vez son creadas
relaciones de confianza entre padres y cuidadores y los profesionales de salud, fortalecidas a
través de la escucha activa y del manejo de síntomas mediante el abordaje profesional de la
asistencia paliativa.
95 - EXPERIENCIA DE FAMILIARES Y DE PROFESIONALES PARA OFRECER LA MEJOR
ATENCIÓN A NIÑOS Y ADOLESCENTES EN SITUACIÓN DE FINAL DE VIDA
BOUSSO, Regina Szylit | SANTOS, Maiara Rodrigues Dos | BALIZA, Michelle Freire | MISKO,
Maira Deguer | SÁ, Natália Nigro De | BOSSO, Letícia | SILVA, Lucía
Background: La enfermedad y la muerte de un hijo son los procesos más difíciles que una
familia puede enfrentar.
Aims: El objetivo de este estudio cualitativo fue identificar, desde la perspectiva de los padres
y de los profesionales de da salud, las estrategias que ayudaron a ofrecer la mejor atención a
niños y adolescentes con cáncer en situación de final de vida.
Methods: Para ello, hemos utilizado la interacción simbólica y la Teoría Fundamentada. Los
datos han sido recogidos por historia clínica, observación participante y entrevistas realizadas
con catorce participantes: 10 profesionales y 4 familiares de niños y adolescentes con câncer,
hospitalizados, en situación de final de vida.
Results: Para los padres es importante recibir informaciones claras, quedarse con el niño y
tener la seguridad de que lo mejor se está haciendo. No refieren mucho acerca de los procesos
de toma de decisiones, dejando que los profesionales se queden con esta responsabilidad.
Los profesionales entienden que la familia también debe ser atendida, pero reconocen que
tienen pocas habilidades para hacerlo. Para garantizar mejor atención para el niño/adolescente
y la familia, los profesionales buscan establecer relaciones con cuidado y compasión, que
involucra estar disponible, ofrecer confort, responder a las necesidades del momento, permitir
el desarrollo de la fe y de la espiritualidad y mostrar que no dejaran de ofrecer atención al niño/
adolescente y a la familia.
Conclusion/Discussion: Este estudio permitió conocer las potencialidades y las limitaciones de
los padres y de los profesionales para cuidar al niño o adolescente con cáncer. Existe la necesidad
de discusiones más frecuentes entre los padres, niños o adolescentes y los profesionales sobre
el pronóstico y el objetivo del tratamiento en todo el curso de la enfermedad, para garantizar
la mejor atención en situación de final de vida.
96 - ADECUACION DEL ESFUERZO TERAPEUTICO (AET): CUANDO HACER MÁS ES LO
CORRECTO. REPORTE DE UNA SERIE DE CASOS
LIZÁRRAGA, Fernando | MOSTAJO, Stella Maris | DI COLA, Estela Haydee
HOSPITAL DEL NIÑO JESUS TUCUMAN
Aims: Mostrar como en algunos casos la AET requiere estrategias activas para mejorar la
calidad de vida y evitar graves problemas potenciales
Methods: Se utilizó un método cualitativo observacional analizando retrospectivamente tres
casos clínicos, en los cuales se decidió realizar medidas activas, para obtener un mayor beneficio
en la calidad de vida
Results: En los 3 casos analizados se realizaron conductas médicas activas, pese al momento
clínico del paciente con buena evolución y con mejor calidad de vida posterior
Conclusion/Discussion: Adecuar el Esfuerzo Terapéutico es un término más apropiado
que limitar ya que se deben elegir las medidas de acuerdo a los objetivos terapéuticos del
momento teniendo presente los fines de nuestras actuaciones. Aplicamos el modelo bioético
de: beneficencia, autonomía, justicia y no maleficencia, con una información adecuada para
los padres y los niños, según sus capacidades y grado de desarrollo. Ellos deben recibir los
mejores tratamientos existentes al momento, considerando lo bueno, lo propio y lo justo para
él, centrándonos en sus mejores intereses y proporcionando un procedimiento que evite un
sufrimiento innecesario a posteriori.
96(B) - ANENCEPHALY NON-LETHAL
AMARAL, Tatiana Mattos Do | LIMA, Sara H. | MOTA, Joaquim Antonio César | RODRIGUES,
Karla Emilia Sa
HOSPITAL DAS CLÍNICAS - UNIVERSIDADE FEDERAL DE MINAS GERAIS
Background: What is meant when referring to congenital malformation as lethal? Lethal
(from the Latin letalis) meaning deadly and relates in Greek to lethe, oblivion. This question
was prompted by the case report of an anencephalic child diagnosed in the neonatal period
who survived for six years without advanced life support. Anencephaly was once considered a
congenital malformation incompatible with life. It aims to ethical discussion on this subject. To
name a problem as lethal there is no risk of implying that should be forgotten to be mortal?
Those destined to have problems incompatible with a life considered “normal” and “worth
living” should be upheld or abandoned? The legal authorization for abortion these fetuses
ABSTRACTS 93
would not be built the concept of quality of life? The health professional should seek to clarify,
within the limits of prognostic certainty, some aspects: what is the diagnosis, and what degree
of accuracy? What is the chance of survival of malformed child if all treatments, including
intensive therapies are provided? If the infant survives, what health problems and sufferings
will be subject to experience? What are the possible emotional, psychological and financial
implications for the family? To the health professional, the anencephalic are human beings with
no future perspective in which it should not make aggressive investments to their mothers they
are often sick children who need care and their extremely valuable lives for them. Doctors have
a duty to be honest with themselves and with patients and their families about the uncertainty
and limits of knowledge. We conclude that the decision to forward an anencephalic child is the
responsibility of all professionals involved in health care, which must provide the information to
the exercise of family decision-making autonomy.
97 - THE LEGAL AND BUREAUCRATIC DIFFICULTIES TO PRESCRIBE OPIOIDS FOR
CHILDREN IN BRAZIL
A M CALÔNEGO, Marco(1) | SILVA, Matheus(2) | A L FERREIRA, Esther(2) | A P CAMPOS,
Guilherme(3) | S CAVALCANTE, Rodney(1) | VITRAL, Lucas(2) | M GANEM, Eliana(1) | A M
BARROS, Guilherme(1)
UNIVERSIDADE ESTADUAL PAULISTA JÚLIO DE MESQUITA FILHO (1); UNIVERSIDADE FEDERAL
DE SÃO CARLOS (2); SANTA CASA DA MISERICÓRDIA DE SÃO CARLOS (3)
Background: The pain can be defined as the moral or physical suffering that affects the human
being (oposite of pleasure).Since the isolation of opium’s alkaloids and with the development of
parenteral administration techniques for those substancies, an increase of medical community’s
interest in those substancies was observed.From that, the social consequences from the opium’s
abusive prescription has been identified.Also, the stigmatization in its prescription and the
“opiophobia”, the exaggerated and irrational fear associated to the administration of opium’s
derivatives, mainly related to children, has been identified.Those drugs constitute the main
therapy for pain treatment in its many different presentations.Those facts raises an investigation
of low prescription and administration of opioids by health providers main reasons.
Aims: To discuss the Opiophobia and its impacts in childrens healthcare.
Methods: Analysis of the current Brazilian law focusing on the Constitution , Brazilian Civil
Code, Law 11.343 / 06 , Decree 344/98MS , Decree 1.083/ 12ms
Results: With the legal analysis, low incentive policies to raise awareness of skilled professionals
for the use of opioids, that have low cost, has been identified. There are also excess of
bureaucracy involved in emission of specific prescription ( Recipes A) , caused by an overly
strict and/or deficient legislation.
Conclusion/Discussion: Preconception in the use of opium derivatives for fear of eventual
addiction to its users-patients , especially the parents fear in their children addiction possibility.
Through the history of mankind, the religious and cultural conflicts can be considered obstacles
to legislative discussions to facilitate access to these drugs. It is necessary that the legislature
in communion with the Federal Council of Medicine revise the current legislation in order to
facilitate awareness , enlightenment and the use of opioids for medical professionals , preserving
the right and dignity of patients , avoiding unnecessary suffering.
98 - LA IMPORTANCIA DE LA FORMACIÓN EN LA COMUNICACIÓN DE MALAS NOTICIAS
A LOS PADRES
LUIZ FERREIRA, Esther Angélica(1) | CAMPOS, Guilherme Augusto Ponte(2) | NASSIF, Damaris
Souza(1) | BAPTISTA, Flávia Hashizume(1) | GRAMASCO, Hendrick Henrique Fernandes(1) |
BARROS, Guilherme Antonio Moreira(3)
UNIVERSIDADE FEDERAL DE SÃO CARLOS (1); IRMANDADE DA SANTA CASA DE MISERICÓRDIA
DE SÃO CARLOS (2); UNIVERSIDADE ESTADUAL PAULISTA JÚLIO DE MESQUITA FILHO (3)
Background: La comunicación de malas noticias es una parte esencial de la formación del
médico, pero aún existen dificultades. Históricamente, los médicos no se sentían confortables
al anunciar las enfermedades severas a los pacientes, pues entendían que esto podría estar
asociado a un mal pronóstico. Después de este periodo, ocurrió lo opuesto: las noticias
comenzaron a ser dadas sin criterios, lo que también no trajo un buen resultado. De esta
forma, se ha iniciado la educación en malas noticias, con el auxilio de protocolos, dejando los
profesionales más seguros para estas situaciones.
Aims: Demonstrar la importancia de la capacitación y desarrollo de las competencias del
profesional de salud en comunicar malas noticias.
Methods: Analice del perfil de profesionales del área de la salud, con respecto a la educación
en comunicación de malas noticias, basado en un relato de caso.
Results: Recién nacido originario de una madre que, durante la gestación, hizo terapia completa
para sífilis, considerada inadecuada, ya que su esposo no fue tratado concomitantemente.
Después del protocolo de investigación, fue identificada la necesidad del tratamiento para la
sífilis congénita con penicilina por 10 días. Un primer profesional comunicó a la familia sobre
la enfermedad, el tratamiento y las posibles séquelas, pero esta se mostró resistente a lo
que le había sido propuesto. Después, un segundo profesional, que fue preparado durante
su graduación en comunicación de malas noticias, utilizó los pasos del EPEC (Education for
Physicians on End-of-life Care), en una nueva conversación con los padres, lo que resultó en la
adhesión al tratamiento; además de la satisfacción con los esclarecimientos, conclusión de la
terapia y en el establecimiento de un acompañamiento médico.
Conclusion/Discussion: La adhesión al tratamiento después de la orientación oportuna,
refuerza la importancia del entrenamiento de los profesionales en la comunicación de malas
noticias. El material expuesto no se presentó en ningún otro evento.
99 - PHYSICIAN AND PARENTS: THE JUDICIALIZATION OF MEDICAL DECISIONS FOR
CONFLICT RESOLUTION IN BRAZIL
A M CALÔNEGO, Marco(1) | NASSIF, Damaris(2) | A L FERREIRA, Esther(2) | A P CAMPOS,
Guilherme A P Campos(3) | S CAVALCANTE, Rodney(1) | GONÇALVES, João Victor(2) | M
GANEM, Eliana(1) | A M BARROS, Guilherme(1)
UNIVERSIDADE ESTADUAL PAULISTA JÚLIO DE MESQUITA FILHO (1); UNIVERSIDADE FEDERAL
DE SÃO CARLOS (2); SANTA CASA DE MISERICÓRDIA DE SÃO CARLOS (3)
Background: Parents are the real representative of their underage children, this way, they are
responsible for taking decisions in their names. The situation of children who are at hospitals for
restoration of their health or for relief of the pain that they can feel is extremely delicate, since
those who are more emotionally involved, in other words, the parents, are also the responsibles
for taking decisions relevant to their health. It is not rare cases in which the parents don’t
agree or homologate doctor’s decisions. A classical example is the disagreement between the
parts concerning blood transfusion motivated for religious questions. In these cases, the last
alternative is to take the questions to the judiciary for the resolution of the conflict.
Aims: to discuss the conflicts between parents and health providers regarding children care.
Methods: Analysis of the current Brazilian law with a focus on the Constitution, Civil Code, Law
No. 8.069 / 90 and Jurisprudence.
Results: With the legal and jurisprudential analysis it is found that in case of any controversy
about the adopted medical procedures or physician disagreement about position adopted by
parents remain as a last alternative to resolving the issue through the intervention of the
judiciary means.
Conclusion/Discussion: Despite being a form of conflict resolution , the judiciary should not
become the main sphere of resolution of these controversies , anyway , as current jurisprudence
is clear that , regardless of the reasons that lead parents to taking any decision , the judicial
finding any conflict between them and the right to health and life, who are above any other
right or will, always will meet based medical decisions and the will of the parents should be
replaced by court order. It is standard practice by health professionals to decision-making in
favor of health and life despite the conviction of parents.
100 - NIÑOS ASISTIDOS POR LA UNIDAD DE CUIDADOS PALIATIVOS PEDIÁTRICOS
DEL CENTRO HOSPITALARIO PEREIRA ROSSELL CON DIRECTIVAS DE “ADECUACIÓN
DEL ESFUERZO TERAPÉUTICO” 2009-2015
KOZIOL ANTMANN, Silvia | MAUVEZIN ROSSENBLATT, Joaquín | PEREIRA PEREYRA, Inés |
NOTEJANE IGLESIAS, Martín | BERNADÁ SCARRONE, Mercedes
UNIDAD DE CUIDADOS PALIATIVOS
OSPITALARIO PEREIRA ROSSELL
PEDIÁTRICOS,
HOSPITAL
PEDIÁTRICO-
CENTRO
ABSTRACTS 95
Background: en las últimas décadas ha aumentado la sobrevida de niños con enfermedades
que amenazan sus vidas. En ellos, las directivas de adecuación del esfuerzo terapéutico (DAET)
son una herramienta importante para alinear las medidas terapéuticas a los “objetivos de
cuidado” del paciente y su familia.
Aims: describir las características de los niños asistidos por una unidad de cuidados paliativos
pediátricos (UCPP) con DAET y su proceso.
Methods: estudio descriptivo, retrospectivo (revisión de historias clínicas), 1/1/200931/10/2015. Población: niños asistidos por la UCPP con DAET. Variables: edad, patología,
participantes en la toma de decisiones, forma de registro, medidas “A REALIZAR” y “NO
REALIZAR” (limitar), tiempo entre: captación por UCPP/DAET, fallecimiento, tiempo entre DAET/
fallecimiento.
Results: durante el periodo analizado 11% (65/601), de los pacientes asistidos tuvieron DAET,
edad mediana: 4,7 años (rango 28 días - 17 años), 78,4% portadores de afectación neurológica
severa. Participantes en la toma de decisiones: equipo de salud y cuidador principal 94%.
Registro en documento específico en historia clínica: 57%. Las DAET incluyeron: “REALIZAR”:
analgesia y cuidados de confort: 100%, ingreso a cuidados moderados: 85%, oxigenoterapia
no invasiva: 88%, y “NO REALIZAR”: reanimación cardiopulmonar: 100%, ingreso a terapia
intensiva: 86%, asistencia ventilatoria mecánica 83%. Tiempo entre captación UCPP/DAET:
mediana: 1,6 meses (rango 0- 54). Falleció 55,3% (36/65), tiempo entre DAET/fallecimiento:
mediana: 32 días (0- 927).
Conclusion/Discussion: sólo 11% de los niños asistidos por la UCPP tenían DAET. En su
mayoría el proceso fue compartido con los padres. Sería importante evaluar el impacto de un
documento específico de DAET en la forma de morir estos niños; también su repercusión para
los padres y el equipo de salud.
101 - LA AUTONOMÍA DEL ADOLESCENTE SOBRE LA DECISIÓN DEL TRATAMIENTO:
RELATO DE EXPERIENCIA
SANDRA ALVES, Sandra Alves Do Carmo(1) | OLIVEIRA, Sandra Silva De(1) | SANTOS, Lucia
Helena Alves Dos(1) | JOSÉ, Sabrina Ayd Pereira(2) | NORONHA, Roberta Dantas Breia De(1)
| FERNANDES, Taisa Guedes(1) | CARNEIRO, Dayse Mary de Souza(1)
INSTITUTO NACIONAL DE CÂNCER (1); UNIVERSIDADE FEDERAL DO RIO DE JANEIRO (2)
Background: Introducción: La muerte, según Heidegger, es la posibilidad de “no más estar
allá”, la posibilidad de la imposibilidad. Es decir, la muerte es la posibilidad más propia del
sujeto. ¿Qué va a decir entonces un adolescente que empieza a vivenciar cambios físicos,
sociales y de mentalidad y siéntense amenazado por ella?
Aims: Relatar la experiencia con un adolescente con cáncer y su decisión sobre el tratamiento.
Metodología: Estudio descriptivo, de abordaje cualitativa, desarrollado en forma de relato de
experiencia.
Methods: Estudio descriptivo, de abordaje cualitativa, desarrollado en forma de relato de
experiencia.
Results: Descripción de la experiencia: J.L.P., 16 años, ha sido diagnosticado con osteosarcoma
metastático y optado por no desarticular el miembro afectado a pesar de saber de las
complicaciones de la enfermedad. Cuestionado por varios profesionales sobre la posibilidad de
llevar a cabo la cirugía, el adolescente ha indagado: ¿Amputaría a su pierna? ¿Está seguro de
que quiere convencerme? Los profesionales le preguntaron: ¿Qué es más importante para ti,
la vida o una pierna? Mismo con una pierna, aún podrás ir donde quieras, tener sus proyectos,
que dependen exclusivamente de ti. Después que le esclarecieron que la muerte no sería breve,
habiendo tiempo para concretizar muchos planes en su vida, el joven contestó: ¿Todavía podré
estudiar, aunque desde mi casa? Los profesionales han explicado que sí. Se ha percibido en este
momento que deberían ser respectados los deseos del adolescente, es decir, su autonomía.
Conclusion/Discussion: La escucha activa y el acogimiento son herramientas importantes
para la asistencia. Después que el adolescente explicó sus sentimientos, se concluyó que el
respecto a su autonomía le daría al joven más calidad de vida que el simple prolongamiento de
ella contra la voluntad de él. El adolescente optó por la asistencia domiciliaria paliativa y sus
últimos días le permitieron realizaciones que no le serían posibles si él no hubiera permitido a
si mismo vivir con calidad.
102 - CUIDADOS PALIATIVOS EN PEDIATRÍA CRÍTICA
SFORZA, Jesica | ZABALEGUI, Florencia | ISRRAILEVICH, Gustavo
HOSPITAL DE NIÑOS DR O ALASSIA
OBJETIVOS: Describir la población de pacientes con criterios paliativos internados en Unidad
de Cuidados Críticos en un Hospital donde no se cuenta con Servicio de Cuidados Paliativos ni
Comité de Ética Médica.
MATERIALES Y METODOS: Estudio observacional descriptivo de pacientes en condición
paliativa que debido a su enfermedad de base, a su injuria aguda o a la combinación de ambas
fueron internados en Cuidados Intensivos Pediátricos entre el periodo de Octubre de 2014 y
Septiembre de 2015. Se registraron sexo, edad, días de internación, diagnósticos y grupo al
que cada uno de los niños pertenece, así como también su evolución.
RESULTADOS: Del total de pacientes internados en dicho periodo (408), 21,5% (88) fueron
niños en condición paliativa. De estos 40,9 % de sexo femenino y 59,1 % masculino. El mayor
número de pacientes (38%) fueron menores de un año. Según el diagnostico de base: Grupo
I: 24%, Grupo II: 16%, Grupo III: 8% y Grupo IV: 46%. Siendo la ECNE el diagnostico
predominante dentro de los fallecidos (44% de Pacientes Paliativos).
CONCLUSIONES: Las Unidades de Cuidados Intensivos Pediátricos son aéreas para pacientes
con posibilidades de recuperación, en las cuales se lleva a cabo el máximo esfuerzo para evitar
la muerte del niño, demorarla o lograr la mínima morbilidad posible. Aunque la mortalidad
ha descendido, la prevalencia de enfermedades incurables y la discapacidad ha aumentado,
dando lugar a un gran número de niños en condición paliativa. Estos últimos presentan escasa
probabilidad de recuperarse o beneficiarse con los cuidados intensivos haciéndose difícil definir
el objetivo terapéutico final.
103 - THE AUTONOMY OF THE PEDIATRIC PATIENT: A DIFICULT MATTER IN PALLIATIVE CARE
A L FERREIRA, Esther(1) | VITRAL, Lucas(1) | A M CALÔNEGO, Marco(2) | A P CAMPOS,
Guilherme(3) | H BAPTISTA, Flávia(1) | H F GRAMASCO, Hendrick(1) | J D SILVA, Matheus(1)
| A M BARROS, Guilherme(2)
UNIVERSIDADE FEDERAL DE SÃO CARLOS (1); UNIVERSIDADE ESTADUAL PAULISTA JÚLIO DE
MESQUITA FILHO (2); SANTA CASA DE MISERICÓRDIA DE SÃO CARLOS (3)
Background: Parents are trully representants of their children´s interests, and therefore ought
to make decisions on behalf of their name. In some cases, children in palliative care show the
desire to be home cared, but their parents oppose to it, for many reasons, from personal and
religious causes to fears. At the same time, children have the liberty and autonomy to decide
where and with whom to be at when in palliative care, enjoying their home, their families and
friends, which the hospital environment does not allow. The health care providers must be
trained to dialogue with the parts, understanding difficults and proposing solutions, without
loss for both.
Aims: To alert to the needs on health care provider education about the autonomy of pediatric
patient, aware of their parents’ fearness over home care.
Methods: Analysis about the present Brasilian Law focusing in the Federal Constitution, Civil
Code, Law nº 8.069/90, Jurisprudence and Medical Ethical Code.
Results: Based on legal and ethical decisions, health care providers ought to guide accordingly
patients and parents regarding treatment decisions, but the final decision belongs to the parents,
although children’s autonomy must be respected. The child has his opinions and should be
listened. As opinions sometimes diverge, the health care provider must mediate the decisions,
which must be made with all family.
Conclusion/Discussion: Parents will should be respected, and the child’s opinion must be
considered, so that, along with health providers, a better ambient could be architected during
the disease’s care. Health providers must be organized, to afford a secure base, when doubts
and fears arise.
104 - #YODECIDO
MARTÍNEZ, Emilia | GONZALEZ, Patricia | MAJDALANI, Ana | MARTÍNEZ, Graciela | SANTOS,
Gisella Estela | YAZDE PULEIO, María L | GOMEZ, Karina
ABSTRACTS 97
Background: La adolescencia es un proceso de cambio biológico y psicosocial; una elaboración
subjetiva y singular. Etapa de descubrimiento de la propia identidad y autonomía. Desde la
Bioética implica, garantizar la toma de decisiones conforme los valores y principios del paciente.
Los cuidados paliativos en adolescentes pueden suponer un dilema, el control de síntomas y
los cuidados de soporte, así como el proceso de toma de decisiones adquieren características
particulares hacia el final de la vida.
Aims: Describir las dificultades del equipo de salud para respetar la autonomía del paciente
adolescente.
Methods: Adolescente de 14 años con diagnóstico de Carcinoma Mucoepidermoide metastásico,
seguida por Cuidados Paliativos desde el diagnóstico hasta su muerte. El motivo de consulta
inicial fue dolor. Intervenida quirúrgicamente, luego el tratamiento fue paliativo. Durante el
seguimiento abordamos: síntomas físicos; aspectos sociales (favoreciendo sus aspectos sanos),
psicológico (preocupación por su imagen corporal, aspectos de la comunicación), espiritual
(religiosidad, búsqueda del sentido) y dilemas éticos hacia el final de vida vinculados al respeto
de su autonomía. En progresión de enfermedad presentó síntomas de difícil manejo: dolor
y disnea, titulación de medicación sin adecuado alivio sintomático; hipercalcemia maligna y
convulsiones. Requirió internación en los últimos días de vida. Acompañada por sus padres,
con ejercicio pleno de su autonomía, abordamos cuestiones referentes al control sintomático
y sedación paliativa; ella la rechaza, vivió conectada y rodeada de sus afectos hasta su
fallecimiento.
Conclusion/Discussion: Este caso representó un reto para todo el equipo de salud, más allá
de lo profesional, un desafí o en lo humano y personal a nuestra capacidad de ejercer una
escucha tan activa como la autonomía de un adolescente lo requiera. Una decisión atraviesa
a una persona en particular, con una circunstancia vital, familiar, social y cultural única e
intransferible. El equipo de salud se enfrenta a las dificultades ofrecidas por las tensiones que
esto implica en el paternalismo médico, al confrontar con la autonomía del adolescente.
105 - EDUCANDO EN LA SALUD Y EN LA ENFERMEDAD PRESENCIAS POSITIVAS. EL
MAESTRO EN EL EQUIPO DE CPP
DOMÍNGUEZ, Jorge Omar(1) | LAMAGRANDE, Javier(2)
ESC. 2-034 DR. RICARDO GUTIÉRREZ EDUCACIÓN HOSPITALARIA Y DOMICILIARIA (1); ESC.
2-034 DR. RICARDO GUTIÉRREZ EDUCACIÓN DOMICILIARIA Y HOSPITALARIA (2)
Background: Basándonos en la Pedagogía Hospitalaria y Domiciliaria y en el trabajo de
Intersección entre los ámbitos de salud y docencia. La visión del docente sobre el niño que
transita un proceso de enfermedad, es una mirada integral y amplia. Es el maestro el que
por naturaleza acompaña el desarrollo evolutivo. Hablar de Educación y Salud es un campo
relativamente nuevo. Hablar de Docencia y Cuidados Paliativos más aún. Este es un camino
nuevo que trae aparejado un sinnúmero de desafíos por parte de todos lo que estamos en esta
tarea. Aunque desearíamos un aula plena de niños sanos, es innegable que muchos de ellos
enferman y que algunos pueden incluso llegar al final de sus días debido a una enfermedad
limitante para la vida. La tarea docente dentro de un equipo transdisciplinario está orientada
a una mejor atención y menor padecimiento. El niño tiene deseos, gustos, su propia opinión
y todos los que participamos en su acompañamiento debemos proveerle cuidado y atención a
sus necesidades físicas, emocionales, culturales y espirituales a fin de potenciar sus aspectos
resilientes.
Aims: Brindar herramientas desde la pedagogía hospitalaria y domiciliaria a docentes a fin
de disminuir el padecimiento ayudando al alumno-paciente a des dramatizar el proceso de
enfermedad.
Methods: Intervenir desde el área de educación en la vida del niño en situación de enfermedad
para garantizar los derechos a la escolarización (Ley Nac. de Ed. 26206, art. 60 y 61). A través
de la formación de pedagogos hospitalarios domiciliarios.
Results: Docentes formados poseen estrategias de auto cuidado y abordaje que les permiten
brindar apoyo y contención al niño enfermo y su familia.
Conclusion/Discussion: Las habilidades del docente para conectar al niño con el mundo
sano, desdramatizando el proceso de enfermedad y aportando elementos de juego, distracción,
entretenimiento y estudio, ayudan a que el niño se sienta bien, logrando una mejor y mayor
calidad de vida para él y su familia.
106 - HERRAMIENTAS PARA LA ELABORACIÓN DE LOS DUELOS EN LA ESCUELA
DOMÍNGUEZ, Jorge Omar | LAMAGRANDE, Javier
ESC. 2-034 DR. RICARDO GUTIERREZ. ESCUELA DOMICILIARIA Y HOSPITALARIA.
Background: Desde un abordaje transdisciplinario, en el área de intersección entre CPP y
docencia domiciliaria y hospitalaria, se hace necesario el abordaje de los “Duelos”, tanto en el
sentido estricto que se refiere a una pérdida física, como en lo que respecta a los innumerables
cambios y transformaciones que son desencadenados por los procesos de enfermedad. Desde el
principio de los tiempos vida-muerte ha sido algo con lo que los hombres estamos en contacto.
Nuestra educación se ha centrado en la vida, en sus etapas. Por temores o por no saber
bien como hablar del tema, la muerte fue dejada de lado, negada, ocultada y muchas veces
padecida como algo terrible o malo. Una familia con un niño en situación de enfermedad, más
aún de tratarse de una enfermedad limitante para la vida, es un grupo humano que tenderá a
ser aislado del orden social por miedo o desconocimiento.
Aims: A través de la formación docente, esta intervención desde el área de educación, está
orientada a brindar una mayor atención y disminuir con ello el grado de padecimiento que la
enfermedad implica.
Methods: Cursos y talleres motivados a partir de la experiencia concreta en ámbitos educativos,
donde se observaba que la escuela no poseía las herramientas para el acompañamiento en
los procesos de duelo, dejando al niño en situación de enfermedad, a sus compañeros y a
sus familias, doblemente impactados e imposibilitados para una adaptación al nuevo campo
social determinado por la enfermedad, y su tratamiento. Además de tener que lidiar con una
presunción de muerte.
Results: Un miembro de la comunidad educativa o familiar preparado para afrontar el desafío
de las pérdidas, no sólo es alguien que puede cuidar y acompañar al niño, sino que también es
alguien con las herramientas adecuadas puede cuidar de sí mismo y ejercer su rol de educador
con mayor eficacia.
Conclusion/Discussion: La presencia del docente formado logra disminuir el grado de
padecimiento que la enfermedad implica y refuerza las capacidades resilientes del niño y su
familia.
107 - LA FIGURA DEL DOCENTE DOMICILIARIO/HOSPITALARIO EN EL EQUIPO DE
CUIDADOS PALIATIVOS PEDIÁTRICOS
LAMAGRANDE, Javier | DOMÍNGUEZ, Jorge Omar | TORRES, Viviana | TORRECILLA, Estela
María | SALDEÑA, Jimena | PAEZ, Ruth
HOSPITAL DR. HUMBERTO NOTTI.
Background: Hablar de Educación y Salud es un campo relativamente nuevo. Hablar de
Docencia y Cuidados Paliativos más aún. Es un camino nuevo que trae aparejado un sin número
de desafíos por parte de todos lo que estamos en esta tarea. Es innegable que muchos de los
niños que transitan su escolaridad llegan al final de sus días siendo la causa una enfermedad
limitante para la vida. La tarea docente dentro de un equipo de CPP está orientada a una mejor
atención y menor padecimiento. Un docente permite ampliar la mirada sobre el niño en su
totalidad. Es el maestro el que por naturaleza acompaña el desarrollo evolutivo.
Aims: Las habilidades del docente para conectar al niño con el mundo sano, desdramatizando
el hecho hospitalario y aportando elementos de juego, distracción, entretenimiento y estudio,
ayudando a que el niño se sienta bien y apuntando básicamente a lograr una mejor y mayor
calidad de vida.
Methods: El equipo de CPP del Hospital Notti tomó este desafío como propio y desde el 2010
incorporó a un docente al grupo. La formación en CPP del docente permitió que luego de 1 año se
trabajara en permanente colaboración con la escuela domiciliaria y hospitalaria conjuntamente
,desde el inicio de la enfermedad (en el caso de los niños oncohematológicos) y en el final de
la vida con otras patotogìas
Results: La tarea que proponemos es fortalecer los roles dentro de un equipo transdisciplinario,
para ello se ha capacitado en el trascurso de 4 años :cuatro nuevos docentes (una de nivel
inicial y tres de enseñanza común).Esto ha permitido que en el 2014 , los niños atendidos por
la escuela domiciliaria/hospitalaria derivados por el equipo se multiplique ,atendiéndose 179
pacientes ,10 de los cuales fueron de cpp,3 con reinserción paulatina y 2 con acompañamiento
domiciliario hasta el final de la vida .
ABSTRACTS 99
Conclusion/Discussion: La idea de esta intersección es parafraseando a Cicely Saunders
…”No podemos evitar la dura realidad que vive (el alumno-paciente), pero podemos ayudar a
que la carga se reduzca a proporciones manejables”.
108 - SEMINARIO DE CUIDADOS PALIATIVOS EN LA FACULTAD DE MEDICINA UNCO
EXPERIENCIAS COMPARTIDAS DE 10 AÑOS
CHACON, Maria Sandra(1) | JURY, Graciela(2)
HOSPITAL PROVINCIAL NEUQUEN (1); HOSPITAL BOUQUET ROLDAN (2)
Aims or goal: El objetivo es optimizar la educación de CP en el pregrado de la Facultad
de Medicina integrando profesionales de los equipos de adultos y pediatría. Los alumnos
adquiririeron herramientas básicas en comunicación de malas noticias, y una visión holística
del paciente con enfermedad crónica avanzada, en base al trabajo en equipo interdisciplinario
Design, methods and approach: Análisis retrospectivo de los seminarios dictados durante 10
años
Results: En el periodo 2004 al 2007 el Seminario de CP fue pediátrico, optativo. El cupo de
alumnos era de 30.Debian tener el ciclo clínico aprobado. Desde el año 2008 hasta la actualidad
continua siendo optativo, la actividad docente se ha enriquecido ampliando la visión holística
sobre el niño y el adulto. Durante 2 años no pudimos desarrollarlo por cambio de reglamento
y autoridades universitarias. En el 2015 a pedido de las mismas se modifico el requisito de
admisión siendo el mismo que tengan aprobada Atención Primaria de la Salud por lo que el
cupo se amplió a 50.En el 2016 se exigirá el ciclo clínico cursado
Conclusion/Lessons learned: En estos 10 años hemos desarrollado el seminario con un
total de 250 alumnos, de los cuales un 50% han rotado en nuestros servicios y participado
de las visitas domiciliarias. En las encuestas de satisfacción destacan la importancia que el
mismo debería ser obligatorio. El hecho de integrar los CP Adultos y Pediátrico en la formación
de pregrado influirá en la oportunidad que tengan los pacientes y sus familias de acceder a la
medicina paliativa cuando lo requieran y esto redundara, tanto, en su calidad de vida como de
muerte.
109 - “SHE WAS MADE PALLIATIVE THAT DAY”: PEDIATRIC ACUTE CARE NURSES’
UNDERSTANDING OF THE CARE PHILOSOPHY OF CHILDREN’S PALLIATIVE CARE
Background: The number of children with Progressive Life Shortening Illnesses (PLSIs)
worldwide has been steadily increasing from advances in medical science and a growing number
of healthcare professionals who are dedicated to caring for this population and their families.
Accordingly, pediatric nurses on general hospital units care for children with PLSIs more often
and are also intensely engaged in controlling pain and managing complex symptoms such
as respiratory support, feeding issues, and seizure management. This care is delivered in a
practice setting based on cure rather than on the tenets of palliative care.
Aims: The intent of this doctoral study was to better understand the experiences of pediatric
acute care nurses in managing pain and symptoms of children with PLSIs on a general unit in
a large Canadian pediatric hospital.
Methods: Qualitative data was collected through individual interviews with eight pediatric acute
care nurses, the transcripts of which were analyzed according to the tradition of Gadamer’s
philosophical hermeneutics.
Results: Participants avoided using the language of palliative care in their conversations
regarding their work with children with PLSIs. Furthermore, when they did talk about palliative
care, they did in the sense of end-of-life: “she was quite palliative by that point.” Participants
admitted to feeling “scared of palliative” and deferred to the palliative care consult team when
asked about how they understood the role of palliative care in their practice.
Conclusion/Discussion: Nurses caring for children with PLSIs and their families over months
and years could benefit from education on the care philosophy of palliative care, as well as
benefit from support and empowerment in their work through an integrative approach with the
palliative care consult team.
110 - CONCEPTUAL AND METHODOLOGICAL ISSUES IN END-OF-LIFE RESEARCH WITH
CHILDREN’S FAMILIES
BOUSSO, Regina Szylit | SANTOS, Maiara Rodrigues Dos | SILVA, Lucía | MISKO, Maira Deguer
Background: One of the most painful processes that a family can endure is the death of the
child. Improving our ability to prevent and diminish suffering is dependent on the completion
of high quality, end-of-life studies.
Aims: To describe an experience of assisting researchers conducting end-of-life research with
children and their families and to provide an overview and practical examples of approaches for
use when conducting pediatric end-of-life research.
Methods: It was explored in the literature the most relevant studies with children’s families in
end-of-life.
Results: It was provided an overview of state of science research of families as informs end of
life research, the meaning of death for families across the lifespan, conceptual and theoretical
perspectives guiding end-of-life research with families, as well as, challenges and opportunities
for transition of a research study to a family intervention in end-of-situation.
Conclusion/Discussion: There is a need to disseminate tested strategies for end-of-life
research with these vulnerable families. These sensitive investigations are needed for evidencebased care to children’s families in end-of-life.
111 - MANAGEMENT OF THE FAMILY WHO HAS CHILDREN WITH MULTIPLE DISABILITY
SILVA, Priscila Selma Tavares(1) | SILVA SAMPAIO, Patricia Stella(2) | ICHIKAWA, Carolliny
Rossi de Faria(2) | GUEDES, Adriana Cecel(1)
UNIVERSIDADE PAULISTA - UNIP (1); UNIVERSIDADE DE SÃO PAULO (2)
Background: Family with chronic children are subjected to factors of internal conflicts, social
and overload in family dynamics, and have to balance the time between caring and monitoring
of multiple handicapped child. It is relevant to know about subjectivity and management of
this core and thus achieve that health professionals begin to assign different behaviors and
actions and appropriate health needs and lives of families and children who experience multiple
disabilities.
Aims: To understand how the family experiences the child’s multiple disabilities in their day-byday, to understand how families see child’s disability and understand the perception of family
facing conflict situations for multiple disabilities.
Methods: The quantitative descriptive approach was used to meet the objectives of the study
and data collection was carried out through the instrument of Family Management Measure the
dimensions identity of the child, family difficulties and mutuality of parents.
Results: All the 35 families interviewed the following outcomes were found: In the dimension
identity of the child: 69% were mothers, from the closed diagnostics 43.48 has cerebral palsy
and hydrocephalus 29.17, 68.57 are in the second childhood stage, with limited child interaction
in the social and educational environment. The dimensions difficulty of the family and parents’
mutual societies on the child’s disabilities were identified, parental sbrecarga in mothers,
emotional imbalance of parents, doubts regarding the quality of life of the child and position in
society, difficulty in sharing of care, mother’s abdication in social life, leading the family to have
insufficient income (62.86%) after child birth.
Conclusion/Discussion: Based upon this study, new populations of families with children with
chronic diseases should be included in order to know how they handle their lives as families on
a daily basis and thus a care plan that is suited to your needs.
112 - ENSURING THE QUALITY OF LIFE OF CHILDREN WITH INCURABLE DISEASES.
TRAINING ON PROVISION OF PALLIATIVE CARE FOR CHILDREN
ANRDIISHYN, Luidmila(1) | SHAPOVAL-DEINEGA, Kseniia(2) | MEL’NYK, Roman(3)
IVANO-FRANKIVSK TRAINING CENTER, CHIEF DOCTOR OF THE HOME CARE TEAM FOR ADULTS
AND CHILDREN (1); INTERNATIONAL RENAISSANCE FOUNDATION (2); IVANO-FRANKIVSK
NATIONAL MEDICAL UNIVERSITY (3)
ABSTRACTS 101
Aims or goal: To emphasize the importance of training on palliative care for children for
specialists regardless of their profile.
Design, methods and approach: Comprehensive palliative care for children can improve
the quality of life for young patients no matter where they are: at home, in the specialized
medical hospital, a hospice, or a specialized orphanage for children with disabilities. Palliative
care for children in Ukraine has just started to develop, regulations on pediatric palliative
care do not yet exist, only one inpatient children’s hospice in Ivano-Frankivsk and 4 visiting
multidisciplinary teams to help children at home exists. Ivano-Frankivsk Training Center for
Palliative Care supported by the International Renaissance Foundation conducted two phases
of the research. First phase, training of trainers was carried out in the Belarusian children’s
hospice; team participated in Ist and IInd congress on pediatric palliative care in Rome;
disseminated information from Congress; WHO Guidelines on treatment resistant pain in
children with medical conditions were translated into Ukrainian and disseminated, all materials
were adapted to training programs. During the second phase carried out in 2014-2015 staff
of Nadvirna children’s hospice, staff of 8 home care PC teams, medical and social workers
of specialized orphanages; children’s oncologists and neurologists, pediatricians and family
doctors were trained.
Results: More than 500 different specialists received special knowledge and skills on provision
of palliative care to terminally ill children. They use this knowledge and skills in their practical
work with children.
Conclusion/Lessons learned: Quality of life for children with incurable and serious diseases
can and must be achieved not only in specialized palliative care institutions, but also in any other
places of residence or treatment. The team of the Ivano-Frankivsk training center developed
the list of recommendations to theMoH, how to improve the quality of educational programs for
doctors around Ukraine.
113 - “CUIDADOS PALIATIVOS PEDIÁTRICOS: DISPENSACIÓN DE CUIDADOS DE
ENFERMERÍA Y SU MARCO REGULATIVO EN LA REPÚBLICA ARGENTINA”
ABTT, Gabriela Noemi | ENRIQUEZ, Gabriela | JACOBS, Edith Marcela
Background: En la República Argentina los Cuidados Paliativos Pediátricos (CPP), tiene sus
comienzos en 1985, con una médica pediatra como integrante de la Fundación Prager- Bild:
la Dra. Rosa María Germ. En la actualidad, existen 14 equipos en 8 provincias (de los cuales 6
son de 1 o 2 personas) y 5 equipos en la capital federal y alrededores (C.A.B.A. y G.B.A.). El
Ministerio de Salud de la Nación aprobó en 2010 el título de especialista en enfermería paliativa.
En líneas generales, el marco legal hace referencia al reconocimiento de los cuidados paliativos
como parte de los derechos humanos, a la autonomía de decisión revocable, a la limitación
del tratamiento médico, a suprimir intervenciones extraordinarias o desproporcionadas y a los
cuidados mínimos (alimentación, hidratación, aire sin apoyo invasivo, tratar y aliviar el dolor).
Aims: • Promover la incorporación del concepto de cuidados paliativos pediátricos en el personal
de enfermería. • Favorecer la accesibilidad al conocimiento del marco regulativo argentino
para la dispensación de cuidados paliativos pediátricos. • Fomentar la autorreflexión sobre los
cuidados paliativos pediátricos.
Methods: Se realizó una revisión sistemática del inicio y proceso histórico de los cuidados
paliativos pediátricos y del marco regulativo sobre estos cuidados en la República Argentina.
Results: La revisión bibliográfica fue extensa al igual que su análisis. El concepto y el campo
de los cuidados paliativos son relativamente nuevos y continúan en desarrollo. El material
regulativo y formativo es muy amplio, pero requiere de mayor difusión.
Conclusion/Discussion: Es importante y necesario que nos capacitemos y actualicemos
respecto de los cuidados paliativos, desde su concepto, alcance, pacientes pasibles de ser
incluidos y aspectos que integran estos cuidados. En pediatría hay muchas enfermedades
congénitas y adquiridas no curables y/o difícilmente tratables cuyo número supera quizás al de
los pacientes con cáncer. El desafío es grande, los mitos y las falsas creencias a modificar son
numerosas.
114 - NURSING PROCESS IN BREAST MILK DONATION BY MOTHERS WHO HAD
PERINATAL/NEONATAL LOSS
ESQUILLARO, Larissa Nakabayashi Kraemer(1) | LAGONEGRO, Nicole(2) | SILVA SAMPAIO,
Patricia Stella(3) | ICHIKAWA, Carolliny Rossi de Faria(3) | GUEDES, Adriana Cecel(2)
UNIVERSIDADE PAULISTA- UNIP (1); UNIVERSIDADE PAULISTA - UNIP (2); UNIVERSITY OF
SÃO PAULO (3)
Aims or goal: Find scientific evidence about breast milk donation after perinatal or neonatal
loss, verify if this donation helps in the grieving process and develop a nursing process in this
context.
Design, methods and approach: This is a nursing process in breast milk donation after
perinatal or neonatal loss developed according to a hypothetical situation and after a systematic
literature research on the subject.
Results: According to the diagnoses found, Deficient Knowledge for breast milk donation,
Readiness for enhanced resilience and Readiness for Enhanced Decision-Making, this last was
the principal, which has as interventions Decision-Making Support, Grief Work Facilitation:
perinatal death, Emotional Support and Active Listening aiming the Decision-Making, Grief
Resolution and Personal Autonomy and Resiliency as outcomes.
Conclusion/Lessons learned: The nursing process at the moment of the loss will facilitate
the grief process and healthcare profisssionals play a fundamental role in helping the decisionmaking for breast milk donation, guiding for breast care and the mourning process. Studies
have shown that breast milk donation can help in the grieving process specially when finding
meaning in her loss by helping other babies in critical situation. However, it is not yet a proven
fact that milk donation in this situation really helps in the grieving process, therefore more
research is needed in this area.
115 - INTERVENTION OF THE OCCUPATIONAL THERAPIST WITH A CHILD WITH
GRAFT-VERSUS-HOST DISEASE FROM THE PERSPECTIVE OF PALLIATIVE CARE: A
CASE STUDY
BAGIO, Priscila | KUDO, Aide Mitie | SOUZA, Fernanda Degani Alves | FRANCO, Mariana de
Paiva | AMARO, Jéssica Moscatelli | ANNUNCIATO, Bruna Gabriela Pascarelli | BULLARA, Paula
| BITTENCOURT, Renata Sloboda
Aims or goal: Chronic granulomatous disease (CGD) is an immunodeficiency characterized by
severe recurrent infections by the formation of granulomas. Affects mainly the skin, respiratory
and digestive system, glands and liver. The groundwork of treatment is early diagnosis of
infections and the immediate use of antibiotics, and the hematopoietic stem cell transplant
(HSCT) is the curative treatment of CGD. One of the possible complications of allogeneic HSCT
is Graft-Versus-Host Disease (GVHD), in severe cases is associated with high mortality. In
this context and in the context of palliative care, the role of the occupational therapist can
contribute to the comprehensive care to patients and family.
Design, methods and approach: To describe the intervention of the occupational therapist
focusing on Palliative Care with a 3-year-old patient, male, carrying DGC submitted to HSCT on
26/06/2014, with clinical development for chronic GVHD, hospitalized for six months and there
about three months ended therapeutic possibilities of cure.
Results: Report of occupational therapy intervention with a child with GVHD, held from April
to October 2015, based on regular visits, documentary analysis of medical records, clinical
supervision, in a public hospital in Sao Paulo - Brazil.
Conclusion/Lessons learned: With the progression of GVHD was observed maternal attitude
with contact deprivation and isolation of the patient due to the worsening of the clinical condition.
The reorganization of daily life activities and expansion of playful repertoire of the patient using
recreational activities, artistic and socialization took place. The patient presented significant
gains: improvement of language; acquisition of complex dialogues; evolution of games starting
symbolic play; gait recovery after months bedridden and expansion of the relational network.
The intervention of the occupational therapist, the promotion of autonomy, reorganizing the
daily life and expansion of playful repertoire is fundamental for the integral development and
improvement of quality of life of the patients in palliative care.
ABSTRACTS 103
116 - ‘HAVING A REMARKABLE MEMORY OF MY CHILD’: PARENTS AND PROFESSIONALS’
RELATIONSHIP DURING THE CHILD’S DYING PROCESS IN ONCOLOGY
RODRIGUES SANTOS, Maiara(1) | BOUSSO, Regina Szylit(1) | MISKO, Maira Deguer(2) | SILVA,
Lucía(1) | ICHIKAWA, Carolliny Rossi de Faria(1) | SAMPAIO, Patricia Stella Silva Sampaio(1) |
SA, Natalia Nigro(1) | BALIZA, Michelle Freire(1)
UNIVERSIDADE DE SÃO PAULO (1); UNIVERSIDADE FEDERAL DE SÃO CARLOS (2)
Background: The relationship between healthcare providers, parents and children during an
end-of-life situation is complex and multidimensional. There are few evidences exploring how
these relationships during the child’s last hospitalization influence parental adaptation after the
child’s death.
Aims: To understand parents’ experience in their relationships with healthcare providers during
the dying process of children with cancer at the hospital.
Methods: This is a qualitative study and the philosophical hermeneutic was used. Family
members were interviewed at least 6 months after the child’s death from cancer at the hospital. A
search in pediatric hospital’s obituary helped to identify families. Each interview was audiotaped
and transcribed. For the analysis, units of meaning and clusters were identified, then categories
were inductively determined guided by an interpretation process.
Results: The most relevant aspects emerged in parents’ experience regarding the relationship
established with healthcare providers were communication, bond, care access, competence,
values and beliefs. The presence of these elements influences the way parents perceive their
role while they live the unexpected experience of losing a child. During the child’s end-of-life,
this relationship serves as the basis to strengthen and support the parenting role and becomes
a remarkable reminder that they keep as a permanent connection to the deceased son. By
revisiting these memories, meanings arise influencing their grieving process.
Conclusion/Discussion: The quality of parents’ bond formed with the healthcare providers is
a concrete reminder of the child’s trajectory. Policies in pediatric palliative care must emphasize
directives to enhance the practice allowing families to maintain a secure bond to be reminded
even after the child’s death, helping to prevent complicated grief.
117 - SYSTEMATIZATION OF ASSISTANCE AND NUTRITION CARE IN CHILDREN AND
ADOLESCENTS WITH EPIDERMOLYSIS BULLOSA
NASCIMENTO, Andréa | FREITAS, Elaine | POLASTRINI, Rita Tiziana Verardo | ZOBOLI, Ivete |
BARBOSA, Silvia Maria Macedo
Aims or goal: To describe the systematization of assistance and nutritional care of EB patients
were followed up in the clinic of a university children’s hospital of high complexity in Sao Paulo.
Design, methods and approach: A literature review from 2000 to 2012 was conducted
including papers in Portuguese, English and Spanish from SCIELO and PUBMED databases. The
key words used were: EB, nutritional assessment, nutritional care, nutrition, supplementation,
children and adolescents. The systematization protocol and its application in clinical practice
were formatted.
Results: The systematization of assistance was divided into 7 steps: social and nutritional
screening, nutritional degree of assistance, assessment of nutritional status, nutritional diagnosis,
conducts and plans. Nutritional conducts were defined according to the individual needs of
patients, respecting their likes and dislikes regarding their diets, emotional, socio-cultural
and economic conditions. 38 patients were treated, of which all were marked malnutrition,
according to WHO classification, and 42 % (16) ware instructed to make use of nutritional
supplementation. After the in introduction of food supplementation, although not having gained
considerable weight, it was noted that patients had a lessening in skin lesion and better skin
cicatrization.
Conclusion/Lessons learned: Patients with EB must receive high calorie and high protein
diet, adapted in consistency and temperature, with also a needed nutritional supplementation
to replace losses and obtain the adequate nutritional value diet. After assessment, patients
show a better response to treatment with a lower appearance of infections and better quality
of life.
118 - CREATION OF A GUIDE FOR PATIENTS WITH ONCO-HEMATOLOGIC DISEASES
BITTENCOURT, Renata | FRANCO, Mariana | BULLARA, Paula | DEGANI, Fernanda | KUDO, Aide
| BARROS, Priscila
Background: The support to the patient during the understanding of his illness can several
times be a starting point for awareness, acceptance, adaptation and collaboration with the
treatment of a disease that normally implies on significant changes on his daily routine and is
potentially fatal, like cancer. Based on that, a guide for the patient is an important therapeutic
resource at hospitals to be used by the multi-professional team under the scope of palliative
care.
Aims: To describe the process of the creation of an educative and ludic guide, aimed for
children/teenagers with onco-hematologic diseases hospitalized at a pediatric infirmary of a
hospital of high complexity in São Paulo – Brazil, linked with a educational institution.
Methods: A quick literature review about the occupational therapy performance with the
involved population was realized, highlighting the main care and restrictions of the oncohematologic treatment process and was adapted to the reality of this service. This project was
developed by the Occupational Therapy Service in partnership with the association linked with
the referred hospital.
Results: The guide for the hospitalized patients with onco-hematologic disease includes the
process of diagnostic investigation, main exams, treatment types, adverse reactions and cares
needed intra and extra hospital. The guide is interactive and didactic containing graphic and
ludic activities related to the illness process and the treatment, being illustrated with the mascot
of the hospital, seeking to approximate this resource with the daily experience of the patient
in this context.
Conclusion/Discussion: The utilization of the guide under the orientation of the occupational
therapist can help the patient to empower the illness process and the treatment, ensuring the
right to information even for the pediatric patients, following the precepts of palliative care. And
the patient understanding his health condition can keep his significant activities in a coherent
way aligned with his clinic situation until death.
119 - NECESSITY OF DIFFERENTIATION BETWEEN CHILDREN WITH ONCOLOGICAL
AND NON-ONCOLOGICAL CONDITIONS
BALDEGGER, Claudia(1) | DR. SCHLUEER, Anna Barbara(2) | PROF. DR. FRINGER, André(1)
FHS ST.GALLEN, UNIVERSITY OF APPLIED SCIENCES, ST. GALLEN, SWITZERLAND (1);
UNIVERSITY HOSPITAL ZURICH, ZURICH, SWITZERLAND (2)
Background: In Switzerland 3’689 children were affected by a life-limiting illness in 2011
(BFS, 2013). Twohundredfourty of them died in the same year. The leading causes of death
were malformations, leukaemia and neurological diseases. In a tertiary pediatric hospital 20
children die every year, only one of them due to cancer (Greiner, 2014). According to the
classification Together for Short Lives (Widdas, 2013), children with life-limiting conditions can
be attributed to diagnosis group three (progressive conditions without curative possibilities) and
four (irreversible, non-progressive conditions with risk of complication and premature death).
These Children suffer from various complex problems (Bergsträsser, 2010) which demands in
intensiv medical care.
Aims: This study investigated how health professionals assess the importance of palliative
care in children with non-oncological conditions. Additionally, it was examined which structural,
institutional and staffing conditions are necessary to meet the high complexity of care for the
affected children and to further develop palliative care.
Methods: Eleven guideline-based interviews were performed and evaluated using qualitative
content analysis.
Results: The analysis revealed the necessity to differentiate between children with oncological
and non-oncological conditions in order to sensitize for individual needs of tailored support for
affected families to ensure quality of life.
Conclusion/Discussion: The study indicates an ongoing professionalization of pediatric
palliative care in Switzerland. However, politics and institutions are requested to implement
the concept of the Federation with the aim to establish the required structures and to provide
ABSTRACTS 105
resources (BAG, 2012). For health professionals, specific further training on all educational
levels is necessary. Additionally, a common understanding of palliative care provides the basis
for networking and cooperation in multidisciplinary teams.
120 - THE RESIGNIFICATION OF THE CHILDREN AND TEENAGERS DAILY ROUTINE IN
PALLIATIVE CARE AT HOSPTIALS: OCUPATIONAL THERAPIST PERSPECTIVE
FRANCO, Mariana | BITTENCOURT, Renata | BULLARA, Paula | KUDO, Aide | BARROS, Priscila
| DEGANI, Fernanda
Background: Children/teenager in palliative care (PC) need constantly the in-hospital support
and could die during the hospitalization. The multidisciplinary team, which the occupational
therapist is part of, is key for the care of those patients and relatives.
Aims: To describe the resources used by occupational therapist in attendances in PC
at the Onco/Hematologic Infirmary of a tertiary hospital in São Paulo – Brazil.
Methods: Occupational therapist intervention research related to past attendances of patients
in palliative care, during last phase of life, during October/2014 to October/2015 under the
principles of PC.
Results: 28 patients were attended, adding up 398 interventions aiming to increase of life
quality and resignification of daily routine during those final moments of life. The resources
contemplated the interest and potentialities of those individuals, actions aiming to ludic scope,
artistic, social and/or functional, considering the presented needs, to the clinic decline and
disease progression. Are types of those actions: design and elaboration of 18 years old birthday
party to the patient even after the worse of its clinic situation, respecting and satisfying he´s
last desire; possibilities to try painting of a canvas for a 8 years old child that dreamed to be
painter when adult; teenager that could dedicate his final moments to the execution of an
interview with his oncologist and afterwards published in an internal journal; a 7 months years
old baby that went, with his family, to a park at the city to live a different day of his hospital
routine; physical confront initiatives to patients with low level of conscience.
Conclusion/Discussion: The interventions designated to those children/teenagers in PC
enabled the resignification of their daily routine within the hospital context, as well as the access
to meaningful activities even in final moments of life, and from that point the improvement of
their life quality.
121 - OCCUPATIONAL THERAPY AT THE ONCO-PEDIATRIC INTENSIVE CARE UNITY
FROM THE PERSPECTIVE OF PALIATIVE CARE
FRANCO, Mariana | BITTENCOURT, Renata | KUDO, Aide | BULLARA, Paula | DEGANI, Fernanda
| BARROS, Priscila
Background: The evolution of scientific knowledge has contributed in children treatments
diagnosed with onco-hematologic diseases. Nevertheless, the evolution of the disease and the
clinic complications with death risk during the treatment is still a reality and the resources of
the Onco-Pediatric Intensive Care Unit (UTIOP) are fundamental. The occupational therapist
within the multi-professional team can contribute with the full care of the patients and his
relatives since the very beginning of the palliative care.
Aims: To describe the performance of the occupational therapist during the assistance to the
patients diagnosed with onco-hematologic diseases and his relatives, hospitalized at the UTIOP
in a tertiary specialized hospital in São Paulo – Brazil, with a focus on palliative care principles.
Methods: Gathering and a retrospective analysis of the interventions of the occupational
therapist realized from April/2014 to October/2015.
Results: 35 children was assisted from 0 to 18 years old and contemplated the criteria of
this study. 263 interventions occurred after active research, evaluation and discussion with
multi-professional team and the creation of the occupational therapeutic treatment plan,
which includes: Creation of strategies to provide physical comfort to the sedated patients
under mechanic ventilation; Prevention against eventual deformities, edemas and significant
algesic condition; Prescription and creation of assistive technology equipment; Fostering of
the performance of significant activities; Creation of photo charts or scrapbooks with relatives
aiming the significant memories rescue of the patient.
Conclusion/Discussion: The performance of the occupational therapist contribute to the
warranty of the full attention to the patient, providing better life quality during the period at the
hospital and also during the last moments of life. The intervention focused on reception of the
relatives enable resignification of this waiting process, allowing the death process elaboration
in a close future.
122 - THE ROLE OF OCUPATIONAL TERAPY AT HEMATOPETIC STEM CELLS TRANSPLANT
UNITS AND INTESIVE CARE UNITS: A CASE REPORT
FRANCO, Mariana | BITTENCOURT, Renata | BULLARA, Paula | KUDO, Aide | DEGANI, Fernanda
| BARROS, Priscila
Background: Even if the investments on scientific research related to hematopoietic stem
cells transplant are significant and increasing (HSCT), patients with oncologic, hematologic and
immunodeficiency diseases, submitted to this procedure, are still subject to develop significant
compilations during this process.Those complications lead to severe clinic changes, like graftversus-host disease (GVHD), requesting specific cares from intensive care units and, in several
cases, leading to death.
Aims: To approach aspects about the optional therapy intervention in a patient during pre and
post-transplant and at ICU, at a specialized hospital linked with an educational institution in
São Paulo – Brazil.
Methods: Case report of three years old patient diagnosed with Myelodysplastic syndrome,
submitted to HSCT and accompanied by occupational therapist from April 4th to August 8th of
2015.
Results: During this period 48 consultations were carried out, encompassing both functional
and ludic aspects. During the first 67 days at the transplant unity the focus was to strengthen
the occupational performance and the resignification of its daily routine in the hospitalization
context, enabling the maintenance of significant child activities. As the clinical situation
worsened, the patient was transferred to ICU, longing there for more 53 days due to GVHD at
the gastrointestinal tract. At this stage, the patient shown interest for activities that required
less effort, making the occupational therapist able to adapt and favor the practice of those
activities. During the final stage, critical and unstable, the occupational therapist provided
physical comfort to the patient in palliative care, minimizing the risk of deformities, edemas and
pressure ulcer caused by inertia at the bed.
Conclusion/Discussion: The occupational therapists embedded at the multi-professional
team were able to contribute with a full attention to the patient in palliative care, enabling good
quality of life during distinct moments of his treatment until death.
123 - OCUPATIONAL THERAPY AT THE HEMATOPOETIC STEM CELL TRANSPLANT UNIT
FROM A PALIATVE CARE PERSPECTIVE
BITTENCOURT, Renata | FRANCO, Mariana | BULLARA, Paula | KUDO, Aide | BARROS, Priscila
| DEGANI, Fernanda
Background: The Hematopoietic Stem cell transplant (TCTH) is a highly complex procedure
that in recent decades significantly changed the prognosis of patients with diseases that, so
far, were fatal. However, HSCT is not fully resolving method. It is an aggressive procedure that
can give the patient’s life back again or lead him to death. This is due to immunosuppression
induced by the conditioning regimen, making the patient vulnerable to complications that pose
risks to their lives and significant changes in their daily routine. In this context, the occupational
therapist, part of the multi-professional team contributes to the integral care of patients and
relatives based on the principles of palliative care.
Aims: To describe the performance of the occupational therapist assisting the patients with
ABSTRACTS 107
oncologic, hematologic or immunodeficiency diagnoses and to his relatives, at the Hematologic
Stem Cell Transplant Center (HSCTC) at a specialized tertiary hospital in São Paulo – Brazil,
with focus on the principles of palliative care.
Methods: Survey and retrospective analysis of occupational therapy interventions from June /
2014 to October / 2015 HSCTC.
Results: 40 patients were treated, totalizing 855 interventions that occurred through active
search. After specific evaluation, multi-professional team discussion the therapeutic goals were
developed: promote occupational performance and reframe the daily life in the context of
hospitalization, enabling the maintenance of significant activities of the child.The resources
used was graphic activities, recreational, artistic and functional, seeking to make the child as
active as possible in prolonged hospitalization
Conclusion/Discussion: The role of the occupational therapist using the palliative care
principles is fundamental in this context, as it enables the existence of creation of spaces,
trade possibilities and resumption of acting on the world, at it becomes limited by the very
restrictions of treatment.
124 - ABORDAJE INTEGRAL, CONTINUO Y PROGRESIVO AL NIÑO/ADOLESCENTE CON
DIAGNOSTICO DE CÁNCER Y A SU FAMILIA EN UN HOSPITAL PÚBLICO
ALIMUSI, Monica | ESPECHE, Lucia | HERNANDEZ, Carolina | JORGELINA, Garcia | LEON, Yenny
| MENDEZ, Teresa | MILAGRO, Pincheira | TRUJILLO, Carolina
FUNDACION NATALI DAFNE FLEXER
Aims or goal: Describir un modelo de abordaje interdisciplinario desde el diagnóstico de una
enfermedad oncológica y la importancia del cuidado integral y continuo para una mejor calidad
de vida. Compartir con el equipo de salud estrategias de abordaje que favorezcan la adecuada
comunicación y fortalezcan la alianza terapéutica.
Design, methods and approach: Entrevistas conjuntas (médico-psicológica) como herramienta
de intervención. Articulación con el equipo institucional de Cuidados Paliativos. Material
psicoeducativo para favorecer estrategias de afrontamiento. Estrategias no farmacológicas para
el alivio del dolor. Psicoprofilaxis quirúrgica. Pases semanales interdisciplinarios con el equipo.
Seguimiento telefónico. Viñetas clínicas que ejemplifican el trabajo. Los CPP son los cuidados
activos totales del cuerpo, la mente y el espíritu del niño incluyendo el apoyo a la familia
que comienzan cuando se diagnostica una enfermedad amenazante para la vida y continúan
independientemente de si el niño recibe o no tratamiento de la propia enfermedad (OMS,
1998). El cáncer corresponde al grupo 1 del modelo de intervención (ACT,1997). El tratamiento
curativo y paliativo no deben considerarse mutuamente excluyentes, defendiéndolo como un
modelo integrado de CPP (AAP, 2000).
Results: El trabajo en equipo permite implementar acciones integrales en la atención y
contención al niño/adolescente y su familia, mejora la calidad de vida y previene la fatiga por
compasión en el equipo. Favorece el cuidado activo del niño por parte de la familia y la escucha
del paciente y sus necesidades facilitando la elaboración de un duelo no patológico.
Conclusion/Lessons learned: Implementar este modelo de intervención (interdisciplinario)
que incluya los CPP desde el diagnóstico genera beneficios para el paciente, su familia y el
equipo. Este trabajo posibilita una mayor adherencia al tratamiento médico, una transición de
lo curativo a lo paliativo gradual y contenedora y la escucha de los deseos y necesidades del
paciente.
125 - ATENCIÓN DE PACIENTES PEDIÁTRICOS CON ENFERMEDADES LIMITANTES PARA
LA VIDA. UNIDAD DE CUIDADOS PALIATIVOS DEL HOSPITAL H. NOTTI, MENDOZA,
ARGENTINA.
TORRES, Viviana | TORRECILLA, Estela María | SALDEÑA, Jimena | PAEZ, Ruth
HOSPITAL H. NOTTI
Aims or goal: General: Reconocer la importancia del abordaje de pacientes con ELPV por parte
de la UCPP del Hospital H. Notti, de Mendoza, entre enero del 2014 y noviembre del 2015.
Específicos: Conocer características de la población atendida por la UCPP en dicho periodo.
Identificar los pacientes con ELPV y sus diagnósticos más frecuentes. Conocer el número de
fallecimientos de pacientes en seguimiento y el lugar donde ocurrieron. Identificar mediantes
análisis FODA las fortalezas, oportunidades, debilidades y amenazas que se presentan en la
atención de pacientes con ELPV abordados por la UCPP.
Design, methods and approach: Estudio cuantitativo observacional, descriptivo y
retrospectivo. Estudio cualitativo mediante análisis FODA.
Results: 2014: 129 pacientes, 86% padecieron ELPV, en sus cuatro modalidades de atención.
De éstos: el 57% pertenecieron al grupo 2, predominio de patologías oncohematológicas; sigue
con 28% el grupo 4, diagnóstico más frecuente: encefalopatía crónica no evolutiva. Enero a
noviembre 2015: 114 pacientes, 79% padecieron ELPV. De éstos: 36% grupo 1, 31% grupo 4. Los
diagnósticos más frecuentes en cada grupo no variaron con respecto al año 2014. 2014 fallecieron
30 pacientes, 4 en domicilio, 1 en vía pública y el resto en hospitales. Entre enero y noviembre del
2015 fallecieron 36 pacientes: 6 en domicilio y el resto en hospitales. Análisis FODA.
Conclusion/Lessons learned: La UCPP existe desde 1995 y está formada actualmente por
un equipo interdisciplinario completo. Durante el periodo estudiado, la mayoría de los pacientes
padecieron ELPV y los diagnósticos más frecuentes fueron patologías oncohematológicas, con
aumento de pacientes con otras ELPV, especialmente neurológicas. El número de pacientes
fallecidos con acompañamiento, muestra un ligero aumento, facilitando que los niños puedan
morir en domicilio, con adecuado control de síntomas. Si bien hemos podido mejorar la atención
a estos pacientes, aún hay mucho trabajo por realizar, especialmente respecto al seguimiento
domiciliario y la formación de redes con otros niveles asistenciales.
126 - WORKING TOGETHER WITH WHAT WE ALREADY HAVE
MORTLOCK, Denise | GOLIN, Rachel
THE ROCKING HORSE PROJECT, SWAZILAND
Background: Swaziland has a markedly high prevalence of HIV and TB; the morbidity and
mortality from these and other general paediatric conditions make paediatric palliative care
(PPC) essential. Despite being the second African country to formalize a stand-alone palliative
care policy, many gaps in PPC remain. The Rocking Horse Project (RHP) is the only organization
in Swaziland whose focus is to advance PPC, create awareness and advocate continuously
for PPC. To achieve this, we involve all levels of society, from children in pre-schools to chief
executives in multinational businesses.
Aims: RHP’s driving mission is to focus on the needs of children living with life-shortening
conditions via a multifaceted approach to addressing the physical, psychosocial and spiritual
wellbeing of children and their families. RHP’s objective is to join together each aspect of a
child’s palliative care needs with services already available in Swaziland. Establishing links with
these organizations gives children and their families the option to access dignified PPC they
may not have known existed.
Results: To date, RHP has sponsored 321 Swazi children requiring paediatric palliative care.
Support has included paying for medications, laboratory tests, transport to treatment facilities,
employment of caregivers at hospitals and hospices when family members are unavailable,
hospital and hospice fees, therapy sessions, and coordinating medical specialists’ appointments.
Through RHP’s efforts child-friendly environments have been created at 6 healthcare facilities
and 2 play coordinators have been hired to provide child life therapy at Swaziland’s two largest
referral hospitals.
Conclusion/Discussion: • All levels of Swazi society are very willing to assist children
needing palliative care and welcome our programme which provides them with a responsible
and accountable channel for their monetary and in-kind donations. • Medical personnel still lack
experience in communicating effectively with children and managing their pain. • We should
always remember to work with families rather than for families.
127 - EMOTIONAL SUPPORT TO CHILDREN WHO VISIT THEIR HOSPITALIZED MOTHER
IN ONCOLOGY PALLIATIVE CARE
TEIXEIRA, Ana Luiza | SOUZA, Jussara Lima | SANTOS, Laise Potério | PALLINI, Ligia Marcon |
ALMEIDA, Rafaela Cristina
Background: Palliative care advocates the quality of life and comprehensive care not only to
the patient but also to his family. The mother is considered usually responsible in the emotional
ABSTRACTS 109
development of child. However, to cancer patients in palliative stage motherhood gains a new
meaning and the child who experiences this moment may show changes in their behavior,
expressing feelings such as: confusion, anxiety and stress. Perceptions of change in the family
relations and behavior are perceived by children of all ages, even those who do not verbalize
yet, and reverberate emotionally. These feelings can be expressed symbolically through playful
activities.
Aims: Providing emotional support to children under twelve years old when visiting the bed of
hospitalized their mothers in palliative cancer treatment.
Methods: The psychological intervention occurs in the oncology ward of Prof. Dr. José Aristodemo
Pinotti - Women’s Hospital - CAISM / UNICAMP, by a psychologist of the institution throughout
interviews, ludic activities and guidance on the disease of the mother in an accessible language.
It takes place upon request of the patient or the child and aim at assess the child’s understanding
of the illness and hospitalization of the mother and provides the chance of bidding farewell
between mother and child.
Results: Benefits are observed when prior psychological support is offered to the child visiting
in the mother’s bed.
Conclusion/Discussion: The child can be an active participant in the mother’s illness and can
live and socialize their grief. There is a decrease of sadness, weeping and questioning, as well as
fantasies about the hospital’s environment and the disease. This allows the construction of coping
resources to bid farewell to the mother. Stresses the importance of psychological intervention
that stimulates the possibility of parting and elaboration of mourning in this difficult moment.
128 - CALIDAD DE VIDA EN CUIDADORES FAMILIARES DE NIÑOS CON ENFERMEDADES
LIMITANTES PARA LA VIDA
CHACON, Maria Sandra | MARCELLINO, Marianela | NAVARRO HAAS, Maria Paula Navarro
HOSPITAL PROVINCIAL NEUQUEN
Aims or goal: Consiste en una investigación que tiene como objetivo comparar la calidad de
vida de cuidadores familiares acompañado por un equipo de Cuidados Paliativos y otro grupo
que no posee ese tipo de apoyo interdisciplinario
Design, methods and approach: Se realizo una encuesta de 50 preguntas tipo Likert, en
forma voluntaria y confidencial, dirigida a 60 cuidadores familiares de niños de 1 a 14 años con
enfermedades limitantes para la vida, que residen en la provincia de Neuquén. Se analizaran
los datos mediante Epi Info. Se observo la capacidad de la cuidadora para desarrollar las
actividades cotidianas desde la enfermedad del niño, como la afecto directa e indirectamente la
gravedad de los síntomas, la adaptación psicológica y social que genero la presencia de un hijo
con enfermedad limitante para la vida.
Results: Se constato que no hay diferencias en si están acompañadas por un equipo o no en
cuanto al manejo de la información y de la comunicación con el médico de cabecera. Tampoco
en cuanto a la manifestación de tristeza y nerviosismo, y los cambios en la relación de pareja.
Un 25% de las cuidadoras familiares manifestó la necesidad de contratar a una persona o
institución para ayudarlas a cuidar a sus hijos. La mayoría de ellas no cuenta con el apoyo de
un equipo de CP.
Conclusion/Lessons learned: En nuestra encuesta se evidencia que los cuidadores familiares
acompañados por un equipo de Cuidados Paliativos refieren mejor reorganización familiar en las
actividades cotidianas, el cuidado de los hermanos y menos sobrecarga del cuidador principal.
Conocer el grado en que se ve alterada la vida de los cuidadores y sus familias es importante
para mejorar la atención interdisciplinaria, evaluarlos aspectos débiles o deficitarios del sistema
de salud, y la red de atención en general.
129 - TO ASSESS THE CHANGES IN QUALITY OF LIFE OF CHILDREN WHO WERE
PROVIDED PALLIATIVE CARE THROUGH CHILDREN’S PALLIATIVE CARE PROJECT IN
MAHARASHTRA
MUCKADEN, M A | TALAWADEKAR, Pradnya
Background: Life limiting conditions like congenital disorders, Cancer, HIV, Thalassemia, prevent
children from enjoying the possible quality of life that would normally be enjoyed by children.
The conditions bring with them pain, discomfort, medications, investigations, hospitalization
and emotional, psychological and social challenges. When holistic care by multidisciplinary
team is provided, quality of life of these children can improve to certain extent.
Aims: To assess the changes in quality of life of children with life limiting conditions after
organising the services at rural and urban centres in India
Methods: Children enrolled under CPC project were provided holistic care by multidisciplinary
team. Peds QOL questionnaire was administered at every visit of the child to the centre. The
data was collected with SPSS software. It was analysed by paired T test for 577 samples. The
difference in the geographical settings was compared.
Results: Quality of life with respect to physical functioning improved from 54% to 72%. It
improved with respect to emotional functioning from 28% to 60 %. With social functioning it
improved from 43% to 70% and with scholastic functioning it improved from 48% to 70%.
Conclusion/Discussion: With emphasis on holistic approach like adherence to symptomatic
treatment, counselling, networking with schools, peers, NGOs, co-ordinating adolescent
workshops, recreational activities, vocational guidance, referrals to supportive and rehabilitation
care; quality of life of children improves to a great extent.
130 - THE IMPACT OF FAMILY-CENTERED CARE IN REDUCING STIGMA AND
DISCRIMINATION IN THE MANAGEMENT OF HIV/AIDS IN CHILDREN
KAYANGE, Alick(1) | KIWANGA, Faraja(2) | MAGESA, Daniel(3)
PASADA, MEDICAL RESEARCH AND PUBLICATION DEPARTMENT (1); OCEAN ROAD CANCER
INSTITUTE, DAR ES SALAAM-TANZANIA (2); PASADA MEDICAL DEPARTMENT (3)
Aims or goal: Stigma has been one of the major barriers for HIV+ children in accessing medical
care. Discrimination occurs when a distinction is made against a person that results in his or her
being treated unfairly or unjustly on the basis of their belonging, or being perceived as belonging,
to a particular group; this may worsen the stigma and lead to poor family support, denial,
failure to disclose of HIV status, denial for social support, experience loneliness, depression and
increased rate of HIV transmission.
Design, methods and approach: A case study of an HIV positive male child aged 11 years
old whose mother died from AIDS when he was 3 years old: his father abandoned him after
discovering his HIV status. The child has been suffering from multiple skin infections, chest
infections and generalized body weakness. Currently he is living with his grandmother.
Results: Through Family-Centered Care which enabled the involvement of the whole family,
care and treatment plans were established. These included: home visits, psychosocial support,
return to schooling and enrolment in the antiretroviral therapy program.
Conclusion/Lessons learned: Currently the child’s health has significantly improved; he has
returned to school and has attended grieving sessions as part of psychosocial support.
Family-Centered Care plays a pivotal role in the management of children living with HIV and
facing challenges of stigma and discrimination. It is easier to address the issue of stigma by
involving the whole family.
ABSTRACTS 111

presentación de trabajos - ICPCN Conference Buenos Aires

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