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DIALYSIS SUPPORT GROUP AT SAN JOAQUIN GENERAL
HOSPITAL DIALYSIS CLINIC
A Project Presented to the Faculty
of
California State University, Stanislaus
In Partial Fulfillment
of the Requirements for the Degree
of Master of Social Work
By
Angelina Y. Santillan
May 2015
CERTIFICATION OF APPROVAL
DIALYSIS SUPPORT GROUP AT SAN JOAQUIN GENERAL
HOSPITAL DIALYSIS CLINIC
by
Angelina Y. Santillan
Signed Certification of Approval Page is
on file with the University Library
Kilolo A. Brodie, MSW, Ph.D.
Associate Professor of Social Work
Date
Katie Galvin, Ph.D.
Assistant Professor of Social Work
Date
© 2015
Angelina Y. Santillan
ALL RIGHTS RESERVED
DEDICATION
This project is dedicated to the amazing patients of the San Joaquin General
Hospital Dialysis support group who inspire me to live life to the fullest and taught
me to appreciate life everyday, no matter what your circumstances are. They are some
of the strongest people I know and inspire me to continue this great calling as a social
worker.
iv
ACKNOWLEDGEMENTS
Above all things, thank you God for all your blessings and allowing me the
opportunity to work in a field I love. I also want to thank you for bringing all of these
wonderful people into my life that contributed to this project.
Thank you to my amazing mother and father, sisters, brother in-law, and close
friends that supported and encouraged me every step of the way. I could not have
done this without each of you. I love you all.
Thank you to the institutional review board at San Joaquin General Hospital
for being so supportive of this project. A special thanks to Carla Bomben and Kathy
Medeiros for your expertise and guidance in completing this project.
Thank you to all the staff and social workers at the dialysis clinic for being
supportive of this project and for the opportunity to work with your patients.
Thank you to my project chair, Dr. Kilolo Brodie for your expertise, guidance,
and support these last several months. And also for reminding me to take a deep
breathe and relax in my times of stress.
Thank you to my project reader, Dr. Katie Galvin for being another set of eyes
on this project and for your positive feedback.
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TABLE OF CONTENTS
PAGE
Dedication ...............................................................................................................
iv
Acknowledgements .................................................................................................
v
Abstract ................................................................................................................... viii
Description of the Project .......................................................................................
1
Objectives of the Project .........................................................................................
3
Significance of the Project ......................................................................................
4
Review of Related Literature ..................................................................................
5
Categories of Social Support ......................................................................
Social Support and Quality of Life .............................................................
Challenges of Chronic Kidney Disease ......................................................
Lifestyle Changes on Dialysis ...................................................................
A Collaborative Approach to Chronic Kidney Disease ..............................
A Comparison of Face-to-Face and Online Focus Groups .........................
Consideration of Literacy Skills .................................................................
5
6
6
7
8
9
10
Methodology ...........................................................................................................
12
Conclusion and Recommendations .........................................................................
16
Objective # 1 ...............................................................................................
Objective # 2 ...............................................................................................
Objective # 3 ...............................................................................................
Objective # 4 ...............................................................................................
Recommendations .......................................................................................
Impact of the Dialysis Support Group ........................................................
The Role of the Facilitator ..........................................................................
Limitations ..................................................................................................
Implications for Social Work Practice ........................................................
18
19
19
20
22
24
24
25
26
References ...............................................................................................................
29
vi
Appendices
A.
B.
C.
D.
E.
Informed Consent........................................................................................
Dialysis Support Group Sample Flyer ........................................................
Dialysis Support Group Curriculum ...........................................................
Dialysis Support Group Initial Survey........................................................
Dialysis Support Group Post Survey ..........................................................
vii
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37
38
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58
ABSTRACT
In the United States over 430,000 people undergo dialysis treatment annually to
replace the functions of a healthy kidney. To measure the impact dialysis treatment
has on patients’ quality of life, the Centers for Medicare and Medicaid (CMS)
adopted indicators on the Kidney Disease Quality of Life (KDQOL) survey to
evaluate patients’ perceptions of their quality of life. These indicators are: 1) Physical
health, 2) Mental and emotional health, 3) Burden of kidney disease, 4) Symptoms
and problems caused by dialysis treatment, and 5) Effects of kidney disease on daily
life. Research has shown the positive influence of social support in the course of
chronic illness. This researcher proposed the implementation of a dialysis support
group at San Joaquin General Hospital, and developed a curriculum that addressed
quality of life indicators specific to kidney disease. This project offered a unique
opportunity for patients to discuss topics related to chronic kidney disease and
dialysis, share information and experiences with each other, receive education, and to
provide and receive emotional support. Patient evaluations suggested that participants
of the dialysis support group gained increased knowledge of kidney disease and
treatment options, and found this group to be an outlet to share experiences with other
patients who also face the challenges of chronic kidney disease. The evaluation
surveys also indicated that participants would benefit from further and continued
education on physical and mental health to improve their perceptions of their overall
health in relation to kidney disease.
viii
DESCRIPTION OF THE PROJECT
According to the United States Renal Data System (USRDS), 430,273 patients
with chronic kidney disease undergo dialysis treatment annually (2013). Dialysis is a
treatment that replaces the functions of a healthy kidney, and is an ongoing treatment
when chronic kidney disease progresses to kidney failure (National Kidney
Foundation, 2014). Previous studies have acknowledged the influence of social
support in the course of chronic disease (Untas et al., 2011), while the impact dialysis
treatment has on patients’ quality of life has also been examined (Swartz, Perry,
Brown, Swartz, & Vinokur, 2008).
Following the completion of the annual Kidney Disease Quality of Life
(KDQOL) and Centers for Medicare and Medicaid (CMS) surveys, management staff
and the dialysis unit social workers at San Joaquin General Hospital discussed the
formation of an onsite dialysis support group. The KDQOL is a validated and reliable
instrument that measures multiple emotional and functional aspects of health specific
to patients with kidney disease, and was adopted by CMS as a clinical performance
measurement in 2008 (Medical Education Institute, 2009). The KDQOL considers
five areas: 1) Physical health, 2) Mental and emotional health, 3) Burden of kidney
disease, 4) Symptoms and problems caused by dialysis treatment, and 5) Effects of
kidney disease on daily life. A support group will serve as an intervention for quality
of life and address indicators on the KDQOL.
1
2
This researcher will develop a curriculum and implement a dialysis support
group at San Joaquin General Hospital. The areas identified and measured in the
KDQOL will guide the content and structure of the group. The curriculum (See
Appendix C) will be research informed and based on topics specific to the needs of
patients with chronic kidney disease. The curriculum will reference learning tools and
literature approved by the KDQOL survey. A component of the support group will be
to utilize community resources to provide education and information to the patients at
the dialysis clinic. This researcher will also facilitate the pilot support group from
October 2014-March 2015, under the supervision of the dialysis unit social workers.
The original duration of the support group was proposed for September 2014February 2015. However, due to the Joint Commission survey at San Joaquin General
Hospital, and to ensure space for the group was available, the duration of the pilot
support group was changed to October 2014- March 2015.
This pilot support group will be a closed group, only open to those individuals
who are patients at San Joaquin General Hospital Dialysis Clinic, and not open to the
community.
OBJECTIVES OF THE PROJECT
The objectives of this project are to: 1) Develop a curriculum that provides
opportunities for patients to become more knowledgeable and informed about their
health care decisions and treatment options, 2) Offer a safe outlet for patients to
discuss the challenges of kidney disease, 3) Create a forum where patients can share
thoughts and ideas about how to make kidney disease less of a burden in their lives,
and 4) Improve patient perceptions of their physical and mental health related to
kidney disease.
3
SIGNIFICANCE OF THE PROJECT
Dunkel-Schetter indicated (as cited in Poole et al., 2001) that medical care
was more effective when patients received educational and emotional support.
Patients with kidney disease frequently receive recommendations from their care
team providers, whether it is their physician, nurse, dietician, or social worker.
However, speaking to others who have similar experiences provides a unique
opportunity to share ideas about how to manage dialysis treatment with less stress.
For example, Poole et al. (2001) suggested that in prostate cancer support groups,
participants found information and advice more helpful from other patients, rather
than from medical staff and family members.
San Joaquin County currently does not offer a support group for patients with
chronic kidney disease. While there are online discussion forums, blogs, and email
lists connecting dialysis patients across the United States (Davita Healthcare, 2014),
some patients may prefer face-to-face interactions. A support group for patients with
chronic kidney disease is an opportunity to discuss topics related to kidney disease
and dialysis, share information and experiences, receive education, and to provide and
receive emotional support. A support group additionally allows patients an
opportunity to make connections with others who are also coping with the challenges
of kidney disease.
4
REVIEW OF RELATED LITERATURE
Categories of Social Support
Research has generally associated social support with improved health
outcomes among a variety of acute and chronic illnesses (Cukor, Cohen, Peterson, &
Kimmel, 2007). According to the National Cancer Institute (NCI, 2015), social
support is defined as, “a network of family, friends, neighbors, and community
members that is available in times of need to give psychological, physical, and
financial help.” Langford, Bowsher, Maloney, and Lillis (1997, p. 96) proposed four
types of social support:
1) Emotional support- the provision of caring, empathy, love, and trust.
2) Instrumental support- tangible assistance or services, such as financial aid
or work for others.
3) Informational support- provides information to assist in problem solving
in the form of education, advice, or suggestions.
4) Appraisal support- information that provides self-evaluation and affirms a
person’s behavior.
For the purpose of this dialysis support group project, the literature review
will focus on emotional, informational, and appraisal support. The dialysis support
group will provide opportunities for members to give and receive emotional support
through listening and empathizing in a safe, welcoming, non-judgmental
environment. Informational support will provide members opportunities to discuss
5
6
and receive education on topics related to kidney disease and dialysis. Appraisal
support encourages members to share information and personal experiences, and also
give constructive feedback to each other to better manage their chronic kidney
disease.
Social Support and Quality of Life
In their review of social support among patients with chronic kidney disease,
Patel, Peterson, and Kimmel (2005) suggested that a patient’s lack of perceived social
support is linked to a higher risk for depression and mortality. In another study of
social support and its associations with mortality and quality of life, hemodialysis
patients reported their physical health interfered in their ability to engage in social
activities, feelings of isolation, and feeling like a burden to loved ones (Untas et al.,
2011).
Research has shown that high levels of social support are correlated with an
increased utilization of medical services and medical compliance (Schatell, 2013).
These findings are consistent with those from Untas et al. (2011) who indicated that
low levels of social support were connected to an increased risk for medical noncompliance in dialysis patients.
Challenges of Chronic Kidney Disease
Stress is a factor that patients with chronic kidney disease on dialysis cope
with on a daily basis, as dialysis treatment requires significant adjustment to a new
lifestyle (Swartz, Perry, Brown, Swartz, & Vinokur, 2008). Cukor et al. (2007)
examined several biopsychosocial variables that are potential stressors among
7
patients on dialysis. These stressors include: disease and medication effects, family
dynamics, role change, changes in employment, dietary restrictions, decreased
mobility, financial constraints, loss of sexual function, relationships with dialysis
staff, and awareness of impending death. Dialysis is a life-long treatment and often
lasts for many years, for some until their death (Swartz et al., 2008). Other patients
may discontinue dialysis treatment following a kidney transplant or when transferring
their care to an end-of-life treatment such as hospice.
Lifestyle Changes on Dialysis
Chronic kidney disease requires becoming a more informed patient by
developing an increased understanding of kidney disease and treatment options,
learning new skills to manage the illness, and forming collaborative relationships with
healthcare providers. Chronic kidney disease, as with other acute illnesses, involves
the management of new medications and adherence to a strict diet, yet the addition of
dialysis treatment makes this disease more intrusive than other chronic illnesses
(Novak, Costantini, Schneider, & Beanlands, 2013). Dialysis is very time consuming
and is usually necessary three times a week, lasts about four hours per treatment, and
requires coordination of transportation to and from the dialysis center (National
Kidney Foundation, 2015). Dialysis treatment causes disruptions in the routines of
patients and their family members, and requires adjustment and commitment from
both parties (Novak et al., 2013).
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A Collaborative Approach to Chronic Kidney Disease
Healthcare providers are responsible to ensure people with chronic diseases be
provided the education and skills necessary to increase their confidence to manage
their illness (Wagner et al., 2001). Social workers play a significant role in promoting
patients’ quality of life in managing the challenges of kidney disease, engaging
family and other health support partners, and are heavily relied on by the rest of the
interdisciplinary team (Johnstone, 2013). Social workers have access to community
resources and relationships with community healthcare providers, and can use these
resources to provide education and motivation for patients to become more informed
and active in their care.
In their study of chronic illness management in healthcare organizations,
Wagner et al. (2001) found that organizations benefitted from utilizing community
resources, as these services were not always available within their own organization.
Wagner et al. also indicated that increased access to the services of community
healthcare partners was not only cost-effective, but promoted continuity of care
(2001).
In order to sustain a collaborative team approach, the curriculum of the
dialysis support group designed by this researcher will follow an integrative practice
model. The six-month curriculum of the dialysis support group will utilize resources
from the community and partner healthcare organizations to address topics on a
monthly basis that influence quality of life for people with chronic kidney disease.
These areas include: Kidney transplantation, Exercise, and fall prevention. UC Davis
9
Transplant Center and a kidney transplant recipient formerly on dialysis, will address
kidney transplantation, while the Rehabilitation Director for Gentiva Home
Healthcare will address exercise and fall prevention. Each person will be a guest
speaker at three different support group meetings, and present their knowledge and
expertise in these areas.
A Comparison of Face-to-Face and Online Focus Groups
The purpose of this support group is to provide face-to-face interactions
among patients on dialysis, and present opportunities for them to share information
with each other and offer emotional support. Recently there has been a trend towards
holding support groups online in the forms of email lists, message boards, chat rooms,
and social media websites such as Facebook (Schatell, 2013). With the increasing
popularity of Internet convenience, researchers are examining the advantages and
disadvantages of face-to-face (FTF) and online focus groups.
Abrams, Wang, Song, and Galindo-Gonzales (2015) suggested different tradeoffs between the FTF groups and online focus groups. In their research, they found
advantages of FTF groups included having a facilitator to control discussion topics
and encourage all members to participate in discussion to prevent dominance by a
few members. FTF groups also provided opportunities for emotional connections,
friendships, and collaboration among participants in their sharing of information and
experiences (Schneider, Kerwin, Frechtling, & Vivari, 2002). Abrams et al. suggested
the role of the facilitator could also be a disadvantage as they might have too much
control of the discussions. Another disadvantage of FTF groups is that they can be
10
costly and time consuming, as they require finding an appropriate location,
refreshments, preparation of material, and the time and travel of participants (Abrams
et al., 2015 & Schneider et al., 2002).
Advantages of online focus groups included less control of the facilitator,
cost-effective of both time and money, the ability to reach a more diverse population,
and a more egalitarian approach, as there was less chance for participants to dominate
the conversation (Abram et al., 2015). Disadvantages of online focus groups included
less control of the facilitator, the possibility of technical issues and loss of Internet
connection, disorganized content and material, less elaborate discussions on
important topics, and only included Internet users (Abrams et al., 2015 & Schneider
et al., 2002).
In their study of web-based kidney education, the Medical Education Institute
found that just over 34% of hemodialysis patients had used the Internet. This study
indicated that not all patients with chronic kidney disease have a computer or Internet
access, or are comfortable navigating the Internet (Schatell, 2013). Schatell suggested
that information could be printed or downloaded for patients who do not have access
to online resources, although the author pointed out that this would only meet
patients’ educational needs and not provide social interaction (2013).
Consideration of Literacy Skills
Literacy levels of people with chronic kidney disease must also be considered
when developing educational material and presenting resources to them. When the
Medical Education Institute designed their web-based kidney education program, they
11
targeted the material for a sixth-grade reading level to accommodate the education
level of dialysis patients in the United States (Schatell, 2013). According to the U.S.
Department of Education and the National Center for Education Statistics (NCES), 32
million adults nationwide cannot read, and of those that can read, 21% read below a
fifth-grade level (2003). In that same report, an estimated 23% of San Joaquin County
residents lack basic literacy skills (NCES, 2003). When this researcher developed the
informed consent for the dialysis support group and consulted with the Standards and
Compliance department at San Joaquin General Hospital, this researcher was
informed to be aware of the literacy level of the San Joaquin County population and
therefore created a simple, easy-to-read consent form.
METHODOLOGY
The researcher completed her second year internship at San Joaquin General
Hospital and completed a rotation in the outpatient dialysis clinic. The researcher
chose the dialysis clinic as her focus during the internship. Prior to the internship,
management staff and the dialysis unit social workers had discussed the formation of
a dialysis support group, however the time and commitment needed for its
development was a challenge. In order to administer the support group, a proposal for
a dialysis support group required review and approval by San Joaquin General
Hospital’s Institutional Review Board (IRB). The researcher proposed the
implementation of a dialysis support group as her graduating project to the dialysis
unit social workers, supervising Licensed Clinical Social Worker (LCSW), Director
of Utilization Management, and Assistant Department Manager at the dialysis clinic,
and received their endorsement.
The researcher completed the proposal and informed consent (See Appendix
A) for the dialysis support group with guidance and consultation from the hospital’s
Deputy Director of Standards and Compliance, Carla Bomben, and Dr. Brodie (CSU
Stanislaus, Department of Social Work)- the researcher’s project chair. The
researcher proposed the pilot dialysis support group to the hospital IRB committee on
August 14, 2014, and the project was approved. The researcher contacted Patty
McCormac- Division Program Director for the National Kidney Foundation (NKF),
the Bay Area Association of Kidney Patients (BAAKP), and Yasuyo Tsunemine-
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LCSW Renal Social Worker in Portland, Oregon who is “known as a social work
champion for the Portland Kidney Group” (P. McCormac, personal communication,
March 10, 2014), for guidance and suggestions in the formation of a dialysis support
group.
The researcher created a standard flyer (See Appendix B) to be used every
month to advertise the support group to patients. The design of the flyer required
approval of the dialysis unit Medical Director, the Assistant Department Manager,
and the hospital IRB, which was received. The flyers will be posted around the clinic,
and also given to patients by the social workers and the researcher. Participants that
signed up for the support group also volunteered to recruit other patients by inviting
them personally, and/or giving them a flyer.
The researcher will also submit a monthly report on the progress of the project
to the hospital IRB from October 2014- March 2015. This report includes if there
were any changes to the project and also the number of participants in the project.
The evaluation of this project will utilize a quantitative approach. The survey
instrument has 17 questions, including three open-ended questions (See Appendix D).
This survey is based on the five areas of the Kidney Disease Quality of Life
(KDQOL) survey, however modified to be an appropriate measuring tool for the pilot
dialysis support group.
The first set of questions will assess components regarding physical health,
including their perception of their ability to engage in exercise, physical activity, and
social activities with kidney disease. Another question will ask the participant if the
14
support group improved their understanding in managing kidney disease. The second
set of questions will assess components of their mental and emotional health.
Questions include if participants are able to set time aside for self-care activities, how
much of the time their emotional health interferes in their ability to engage in social
activities or connect with others, and how comfortable they are asking for emotional
support and sharing thoughts and feelings with family and friends, and also with other
patients who also have kidney disease.
The third set of questions will assess components of the burden of kidney
disease and their knowledge about kidney disease and treatment options. Two
questions will ask if they have received education for all the treatment options for
kidney disease, and what treatment options they would like information on. The next
question will ask how confident they are in their ability to learn more about kidney
disease and its treatments. The fourth set of questions will assess components of their
day-to-day symptoms caused by dialysis. These two questions will ask how
comfortable they are reporting new symptoms or changes in their health to their care
team, and how confident they are to follow the treatment plan recommended for
them.
The fifth set of questions will assess components about how much kidney
disease impacts their life. These three questions will ask if they have found ways to
make their diet easier with the challenge of diet and fluid limits, if having kidney
disease encourages them to be a more informed patient and healthcare consumer, and
if the support group increased their confidence in their ability to cope with kidney
15
disease. The last three questions on the survey will be open-ended and offer an
opportunity for participants to make suggestions for future guest speakers, future
topics, and to indicate how attending the support group has helped them.
Ribner and Knei-Paz (2002) recognized the influence of each client’s
perspective on the social worker’s treatment interventions in order to evaluate its’
success or failure. In order to promote a collaborative relationship between the MSW
student and support group participants, encouraging and incorporating their feedback
will be an ongoing process.
The instrument will be used as an initial survey, and then a post survey (See
Appendix E) will be administered at the close of the pilot dialysis support group to
compare results. The survey will also be used to provide feedback for conclusions and
recommendations. The researcher will also incorporate informal feedback from the
participants over the course of the six-month pilot support group. The responses to the
survey will be used to evaluate the overall effectiveness of the support group and
determine if the support group should continue at the dialysis clinic.
CONCLUSION AND RECOMMENDATIONS
The six-month pilot dialysis support group at San Joaquin General Hospital
took place from October 2014 to March 2015. Support group meetings were held
monthly and involved a total of six participants. Three were female and three were
male. Three of the participants were Asian and three were Latino or Hispanic. Their
ages ranged from 28-64 years old. Four participants consistently attended support
group meetings, while two participants attended one support group meeting each.
Four other patients signed the informed consent to participate, although did not take
part in the pilot support group. When the researcher provided dates of the support
group meetings to these patients or followed up with them when they missed a
meeting, they reported the following reasons for not attending: loss of interest,
hospital admissions, medical appointments, feeling ill, family responsibilities, and
temporary relocation.
The patients who expressed the most interest and committed to attend the
support group were in the Monday, Wednesday, Friday, second and third shift
dialysis schedule. The second shift dialysis schedule ranges in the hours of 9:00am12:30pm, and the third shift ranges in the hours of 1:30pm- 5:00pm. Therefore, the
meeting date and time was scheduled for every third Wednesday of the month at
1:00p.m. One month the meeting was held on the second Wednesday to accommodate
the schedule of a community provider, and the group adjusted their schedules to
attend. The patients that participated in the support group attended the meetings
16
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before or after their dialysis treatments on Wednesdays. Participants reported that
although dialysis can make them especially weak or exhausted on certain days,
depending on how many liters of fluid was removed during treatment, it was more
convenient for them to attend support groups on the days they are at the clinic. They
also reported it was less of a challenge to modify transportation arrangements on
treatment days to attend the support group, as some of the participants use outside
transportation services.
A few patients in the Tuesday, Thursday, Saturday dialysis schedule
expressed interest in the support group, and the researcher was willing to facilitate
another monthly meeting to accommodate this group. Ultimately this group of
patients did not sign up, so the researcher did not proceed with facilitating another
support group on those days. For the first two months the researcher scheduled a
morning support group meeting on Wednesdays. This was to accommodate patients
who signed up on the Monday, Wednesday, Friday first shift dialysis schedule that
ranges in the hours of 5:30am-9:00am. However there were no attendees at those
meetings, so the researcher discontinued the morning support group meeting.
To evaluate the dialysis support group each participant was given an initial
survey after the first meeting they attended, and then a post survey when the support
group concluded. Four participants completed both initial and post surveys, while two
participants completed only the initial survey due to their participation in only one
meeting. The five areas measured were physical health, mental and emotional health,
burden of kidney disease and knowledge of kidney disease and treatment options,
18
day-to-day symptoms caused by dialysis, and how much kidney disease impacts their
life.
Objective # 1
The results of objective # 1, to develop a curriculum that provides
opportunities for patients to become more knowledgeable and informed about their
health care decisions and treatment options- yielded the following:
In the assessment of physical health (question #3), all participants agreed or
strongly agreed in both the initial and post surveys that this support group
improved their understanding in managing their kidney disease. One
participant responded, “I got info on therapy for me” (Anonymous, 2015).
In the assessment of burden of kidney disease and knowledge of kidney
disease and treatment options (questions #8 and #8a.), three participants in the
initial surveys agreed and three disagreed they had received education on the
treatment options for kidney disease. Those who disagreed requested
information on peritoneal dialysis, home hemodialysis, and transplant. One
participant responded, “I know a little, but not exactly what each one is”
(Anonymous, 2014). On the post surveys all four participants, including the
three participants who disagreed in the initial surveys, now agreed they had
received education on treatment options. Two participants were unable to
complete the post survey. All participants agreed or strongly agreed in both
the initial and post surveys (question #9), confidence in their ability to learn
more about kidney disease and its treatment options.
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Objective # 2
The results of objective #2, to offer a safe outlet for patients to discuss the
challenges of kidney disease- yielded the following:
In the assessment of mental and emotional health, all participants agreed or
strongly agreed on the initial and post surveys they are comfortable asking for
emotional support and sharing thoughts and feelings with family and friends
(question #6). They also agreed or strongly agreed they are comfortable
asking for emotional support and sharing thoughts and feelings with other
patients who also have kidney disease (question #7).
In the assessment of day-to-day symptoms caused by dialysis (question #10),
all participants agreed or strongly agreed on the initial and post surveys they
are comfortable reporting new symptoms or changes in their health to their
care team. Participants also responded to how this support group has helped
them, “As an outlet for sharing experiences with other people” (Anonymous,
2014) and “more intimate experiences of fellow patients” (Anonymous,
2015).
Objective # 3
The results of objective #3, to create a forum where patients can share
thoughts and ideas about how to make kidney disease less of a burden in their livesyielded the following:
In the assessment of day-to-day symptoms caused by dialysis, five
participants in the initial and post surveys agreed or strongly agreed they are
20
confident in their ability to follow the treatment plan their doctor and care
team has recommended for them (question #11), while one participant was not
sure if they are confident in their ability to follow the treatment plan the care
team has recommended for them. In the post survey, the participant who was
not sure, now strongly agreed they are confident in their ability to follow their
treatment plan.
In the assessment of how much kidney disease impacts their life, all
participants agreed or strongly agreed on the initial and post surveys that
although diet and fluid limits are a challenge with kidney disease, they have
found creative ways to make their diet easier and less of a burden (question
#12). All participants agreed or strongly agreed on the initial and post surveys
that having kidney disease encourages them to be a more informed patient and
healthcare consumer (question #13). Five participants agreed or strongly
agreed on the initial and post surveys that this support group increased their
confidence in their ability to cope with kidney disease (question #14), while
one participant was not sure. In the post survey the participant that was not
sure, now strongly agreed this support group increased their confidence in
their ability to cope with kidney disease.
Objective # 4
The results of objective #4, to improve patient perceptions of their physical
and mental health related to kidney disease- yielded the following:
21
In the assessment of physical health (question #1), three participants in the
initial surveys agreed or strongly agreed that kidney disease interferes in their
ability to exercise or engage in physical activity, while three participants
disagreed that kidney disease interferes in their ability to exercise or engage in
physical activity. In the post surveys, three participants agreed or strongly
agreed kidney disease interferes in their ability to exercise or engage in
physical activity, one disagreed, and two participants were unable to complete
a post survey. All participants in the initial surveys reported that either most of
the time or some of the time in the past four weeks, their physical health
interfered with their participation in social activities (question #2). In the post
surveys, one participant reported their physical health very rarely interferes in
their participation in social activities, while three participants reported their
physical health interferes most or some of the time in their social activities.
Two participants were unable to complete the post surveys. In the final
question for assessment of physical health (question #3), all participants
agreed or strongly agreed in both the initial and post surveys that this support
group improved their understanding in managing their kidney disease.
In the assessment of mental and emotional health, five participants in the
initial surveys agreed or strongly agreed that although kidney disease presents
challenges in their lives, they are able to set time aside for self-care activities
(question #4), while one participant disagreed. In the post survey, three
patients agreed or strongly agreed that although kidney disease presents
22
challenges in their lives, they are able to set time aside for self-care activities,
one participant disagreed, and two participants were unable to complete the
post surveys. In the initial surveys when asked during the past four weeks,
how much of the time their emotional health interfered in their ability to
engage in social activities or connect with others (question #5), one participant
responded some of the time, two participants responded very rarely, and two
participants responded never. In the post surveys one participant responded
some of the time, three responded very rarely, and two participants were
unable to complete the post surveys.
Recommendations
Throughout the course of the six months, participants offered positive
feedback on educational topics and enjoyed topic discussions on treatment options. In
the curriculum, Treatment Options for Kidney Disease, education was provided on
the various treatment options, while UC Davis and the transplant recipient also
offered information on transplantation. It is advised only one treatment option be
discussed per meeting, as information on treatments is detailed and requires more
time for a thorough discussion on the pros and cons of each treatment. The researcher
suggests inviting a nurse or physician to those meetings to answer questions that
require the expertise of a medical professional. Future support group meetings should
incorporate continual discussion on transplantation, as all support group participants
are on the list for transplant and are regularly attending medical appointments to
increase their possibility of transplant candidacy. Participants also suggested former
23
dialysis patients and transplant recipients from their clinic be asked to come back as
guest speakers in support group meetings and talk about their experiences.
In the area of physical health, results indicated that kidney disease does
interfere in the patients’ ability to engage in exercise or physical activity. It is
proposed the support group include discussions on topics of physical health on a
regular basis, especially since this is a chronic condition. Educating participants on
these topics will provide them with both information and opportunities to identify
ways they can better manage their physical health in relation to their kidney disease.
In the curriculum, Gentiva Home Healthcare provided education on exercise
and fall prevention, and even offered to return to the support group for future
discussions on other physical health topics. Continuing partnerships with community
providers and utilizing their knowledge and expertise in areas of physical health is a
great asset to the support group. Participants also requested discussions on the topics
of lifestyle changes, medication effects and management, and working while
disabled. These are also areas that can utilize community resources and partner
healthcare organizations.
Follow up on self-care topics and future topic discussions on mental and
emotional health are also advised. The curriculum topic, Staying Active with Kidney
Disease, should be repeated and especially focus on self-care activities. This would
include a discussion on the importance of self-care, what patients are already doing
for self-care, and how to incorporate new self-care activities in their plan of care.
Reviewing the self-care handout will also be helpful. The facilitator may also want to
24
introduce mindfulness and meditation, as researchers are now studying and
suggesting meditation as a coping mechanism for stress management with chronic
illness (Bauer-Wu, 2010). Participants also requested future discussions on topics of
feelings of loneliness, family relationships, sexual health, and socialization.
Impact of the Dialysis Support Group
The dialysis support group at San Joaquin General Hospital served to engage a
small group of people in an open and engaging discussion of the commonality they all
share- chronic kidney disease. While part of the support group functions to educate
participants about topics related to kidney disease, the support group also functions to
allow participants opportunities to ask questions about what they are most interested
in and to learn from the experiences and knowledge of others. The dialysis support
group serves to empower patients to participate in the education process and become
more efficient in managing their kidney disease. The researcher suggests that support
group participants have come to a better understanding that managing their kidney
disease involves effort and accountability, which although takes tremendous work on
their part, is an empowering concept.
The Role of the Facilitator
The dialysis support group experience is, in large part, a reflection of the
energy and enthusiasm the facilitator brings to the meetings. The facilitator has an
important role in guiding group discussions and engaging the participants in a process
of exploration and learning, while also keeping topics fun and positive. Some topics
will be easier and some more challenging, although it is possible to keep a positive
25
outlook. The facilitator must be responsible for keeping the group focused and on
topic, shifting the group discussion if others dominate the discussion, encouraging
participation of all members (although not forcing participation), and ensuring the
group is doing most of the talking, not the facilitator.
The facilitator must also create a safe, non-judgmental environment, leading
by example of their words and actions. This will encourage support group participants
to also provide a safe, non-threatening environment, and one that is welcoming to
others. The most important thing the facilitator needs to remember is that you are
there to empower the participants to find their own answers and motivators to
improve their quality of life in managing their kidney disease. One participant
responded to how this support group has helped them, “Helped me to understand that
we still have hope to have a normal life, to be patient waiting for a [transplant] donor,
and to stay healthy and happy (Anonymous, 2015).
Limitations
Although feedback from support group participants was mostly positive, the
researcher acknowledges other factors may have contributed to results and
improvement in some areas of the survey. One limitation of the evaluation of the
support group is that results cannot be generalized, as there were only six participants
in a dialysis clinic of over 100 patients. Although only a small group, the researcher
suggests the support group had a positive impact on those that participated and
recommends it continue monthly. The researcher also recommends promotion of the
support group be a collaborative effort among members of the interdisciplinary team,
26
including social workers, nurses, physicians, dieticians, as well as other support staff.
This will likely make the support group more marketable, encourage others to attend,
and keep the energy and momentum of the pilot support group. Even when feeling
physically or emotionally drained, participants of the pilot support group made a
significant effort to attend, as they found the group educational and meaningful. The
pilot support group was a two-way commitment and will require this commitment
from both the facilitator and patients to have future success.
Implications for Social Work Practice
Kidney disease, as with other chronic conditions, significantly influences
patients’ physical capabilities, psychological well-being, and requires adjustment to
lifestyle changes. Patients must cope with chronic illness across the life span and
develop positive health behaviors to increase their quality of life. Medical social
workers must be aware of indicators that affect quality of life, and provide
interventions that address psychosocial needs and offer education on disease
management. As indicated in the review of related literature, social support and
connecting with others is associated with better health outcomes (Cukor et al., 2007).
Offering supportive counseling through peer support groups can assist patients cope
with emotions that accompany illness and treatment, and offer validation in a unique
way that healthcare providers can not give.
Medical social workers can also provide opportunities for patients to become
more informed healthcare consumers and advocates of kidney health. In the support
group meetings before we began topic discussions, time was allowed for
27
announcements from both the participants and facilitator. The researcher utilized this
time to inform participants of current research on kidney disease and advocacy
opportunities to protect healthcare for dialysis patients. Patients expressed interest in
this material and appreciated being given information on policy that would raise
awareness of kidney disease. As social workers we are always advocating for our
clients, but when we empower them to advocate for themselves, that is social justice.
REFERENCES
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REFERENCES
Abrams, K. M., Wang, Z., Song, Y. J., & Galindo-Gonzales, S. (2015). Data richness
trade-offs between face-to-face, online audiovisual, and online text-only focus
groups. Social Science Computer Review, 33(1), 80-96.
doi: 10.1177/0894439313519733
Bauer-Wu, S. (2010). Mindfulness meditation. Oncology, 24(10) 36-40.
Cukor, D., Cohen, S. D., Peterson, R. A., & Kimmel, P. L. (2007). Psychosocial
aspects of chronic disease: ESRD as a paradigmatic illness. Journal of the
American Society of Nephrology, 18(12), 3042-3055.
DaVita. Support groups for people living with kidney disease. (2014). Retrieved
February 8, 2014 from http://www.davita.com/kidneydisease/overview/living-with-ckd/support-groups-for-people-living-withkidney-disease/e/4926
Johnstone, S. (2013, October). Helping patients manage treatment recommendations.
Renal Business Today. Retrieved November 4, 2013 from
http://www.renalbusiness.com/articles/2013/10/helping-patients-managetreatment-recommendations.aspx
Langford, C. P. H., Bowsher, J., Maloney, J. P., & Lillis, P. P. (1997). Social support:
A conceptual analysis. Journal of Advanced Nursing, 25, 95-100.
30
National Cancer Institute at the National Institute of Health. (2015). NCI dictionary of
cancer terms. Bethesda, MD. Retrieved March 10, 2015 from
http://www.cancer.gov/dictionary?CdrID=440116
National Kidney Foundation (2015). Hemodialysis: How long will each treatment
last? New York, NY. Retrieved March 25, 2015 from
https://www.kidney.org/atoz/content/hemodialysis
Nephrology News. MEI launches KDQOL COMPLETE to help dialysis clinics meet
CMS regulations. (2009). Retrieved April 4, 2014 from
http://www.nephrologynews.com/articles/mei-launches-kdqol-complete-tohelp-dialysis-clinics-meet-cms-regulations
Novak, M., Costantini, L., Schneider, S., & Beanlands, H. (2013). Approaches to selfmanagement in chronic illness. Seminars in Dialysis, 26(2), 188-194.
doi: 10.1111/sdi.12080
Patel, S. S., Peterson, R. A., & Kimmel, P. L. (2005). The impact of social support on
end-stage renal disease. Seminars in Dialysis, 18(2), 98-102.
Poole, G., Poon, C., Achille, M., White, K., Franz, N., Jittler, S., … Doll, R. (2001).
Social support for patients with prostate cancer: The effect of support groups.
Journal of Psychosocial Oncology, 19(2), 1-16.
Ribner, D. S., & Knei-Paz, C. (2002). Client’s view of a successful helping
relationship. Social Work, 47(4), 379-387.
31
Schatell, D. (2013). Web-based kidney education: Supporting patient selfmanagement. Seminars in Dialysis, 26(2), 154-158.
doi: 10.1111/sdi.12057
Schneider, S. J., Kerwin, J., Frechtling, J., & Vivari, B. A. (2002). Characteristics of
the discussion in online and face-to-face focus groups. Social Science
Computer Review, 20(1), 31-42.
Swartz, R. D., Perry, E., Brown, S., Swartz, J., & Vinokur, A. (2008). Patient-staff
interactions and mental health in chronic dialysis patients. Health & Social
Work, 33(2), 87-92.
Untas, A., Thumma, J., Rascle, N., Rayner, H., Mapes, D., Lopes, A. A., . . . Combe,
C. (2011). The associations of social support and other psychosocial factors
with mortality and quality of life in the dialysis outcomes and practice pattern
study. Clinical Journal of the American Society of Nephrology, 6(1) 142-152.
U.S. Department of Education, Institute of Education Sciences, National Center for
Education Statistics. (2003). National assessment of adult literacy.
Washington, DC. Retrieved March 25, 2015 from
https://nces.ed.gov/naal/estimates/StateEstimates.aspx
Wagner, E. H., Austin, B. T., Davis, C., Hindmarsh, M., Schaefer, J., & Bonomi, A.
(2001). Improving chronic illness care: Translating evidence into action.
Health Affairs, 20(6), 64-78.
APPENDICES
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APPENDIX A
INFORMED CONSENT
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35
36
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APPENDIX B
DIALYSIS SUPPORT GROUP SAMPLE FLYER
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APPENDIX C
DIALYSIS SUPPORT GROUP CURRICULUM
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40
41
42
43
44
45
46
47
48
49
50
51
52
53
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APPENDIX D
DIALYSIS SUPPORT GROUP INITIAL SURVEY
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56
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APPENDIX E
DIALYSIS SUPPORT GROUP POST SURVEY
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60
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