Towards a Better Understanding of Caregiver Distress in First

Transcription

Jens Einar Jansen - PhD viva 2014
Towards a Better Understanding of
Caregiver Distress in First-Episode
Psychosis: A Study of Psychological
Factors
Jens Einar Jansen
University of Copenhagen &
Early Psychosis Intervention Center
Outline
1. 
2. 
3. 
4. 
Background
Design and measures
Results
Clinical implications
• 
• 
• 
• 
• 
Often live together
Often supportive and engaged
May influence the course of illness
Sometimes the only network
Experience a range of challenges
(Jansen et al, 2014; Garcia, 2006;Askey, 2009; Onwumere et al, 2011;
Kuipers & Bebbington, 1985; O’Brien et al, 2006; Szmukler et al, 1996)
2/3 significantly distressed
Family
members
1/3 mild depression
1/3 PTSD
Experiences such as anxiety,
sadness, grief, anger, guilt,
economic strain …
Psychotic
illness
Expressed Emotion
•  Criticism
•  Over-involvement
Positive family environment
(Kuipers et al, 1993; Kuipers & Raune, 2000; Barton et al, 2008;
Brown et al, 1962; Gonzales-Pinto et al, 2011; O’Brien et al, 2006)
Challenges
1.  Few studies on the early psychosis
2.  Most interventions are based on
expressed emotion (Gleeson et al,1999)
3.  Important to have “a separate
psychosis caregiver service” (Kuipers, 2010)
Why is it that some caregivers get
more distressed than others?
How can we improve the current
understanding of caregiver
distress?
What are the psychological
mechanisms involved?
How can we expand the
intervention repertoire to go
beyond EE and focus more on
caregivers?
Four areas of interest
1.  Subjective appraisal
2.  Emotional involvement
3.  Metacognitive capacity
4.  Unhelpful metacognitive beliefs
Design
•  Cross-sectional study
•  Inclusion criteria
1) 18-35 years of age
2) ICD-10 criteria for a non-affective psychotic disorder
3) first psychiatric treatment for this disorder (Opus)
•  154 caregivers and 99 persons with psychosis
Early Psychosis
Intervention
Center
Jens Einar Jansen
Ulrik Haahr
Susanne Harder
Marlene Buch Pedersen
Hanne-Grethe Lyse
Anne Marie Trauelsen
Mette Sjøstrøm Petersen
Christopher Trier Lind
Erik Simonsen
General Health Questionnaire
(GHQ-30; Goldberg, 2004)
Experience of Caregiving
Inventory
(ECI; Szmukler et al, 1996)
Family Questionnaire
(FQ; Wiedemann et al, 2002)
Indiana Psychiatric Illness Interview
(IPII; Lysaker et al, 2002)
Metacognition Assessment Scale Abbreviated
(MAS-A; Lysaker et al, 2005)
Positive and Negative Syndrome Scale
for Schizophrenia
(PANSS; Kay et al,, 1987)
Metacognitions Questionnaire
(MCQ-30; Wells & Cartwright-Hatton, 2004)
Global Assessment of Functioning Scale
(GAF; APA, 1987)
“There is nothing either good or
bad, but thinking makes it so”.
(Shakespeare, Hamlet)
Self
World
Future
Cognitive Behaviour Therapy
What predicts the level of
distress?
Appraisals and expressed emotion?
OR
Patients’ symptoms or level of functioning?
Over-involvement and criticism related to distress
Jansen et al. (2014). Soc. Psych. Psychiatr. Epid.
Linear mixed-models analysis with distress as outcome
“ … variations in caregiver distress seem
less influenced by the patients’
symptomatology and overall functioning,
than by their own subjective appraisals … ”
Jansen et al. (2014). Social Psychiatry and Psychiatric Epidemiology.
Metacognition
“Thinking about thinking”
(Bateman & Fonagy, 2004; Macbeth et al., 2013; Skårderud, 2007;
Dimaggio et al., 2010; Lysaker et al, 2014; Brune, 2005; Frith, 1992;
Semerari et al, 2003)
Metacognition
(adapted from Choi-Kain & Gunderson, 2008)
Interview (IPII)
Can you tell me the story of your family?
Do you think he/she has a mental illness?
Has anything changed because of this?
Do think this controls your life?
What do you see ahead of yourself in the future?
MAS-A
Self-reflectivity
Understanding others
Decentration
Mastery
Metacognition and caregiver experience
Jansen et al. (2013). Psychology and psychotherapy:
Theory, Research and Practice.
“One possibility is that, with a greater
capacity to form complex ideas about one
self and others it may be possible to have a
more balanced experience of caretaking in
which there are both positive and negative
experiences”
Jansen et al. (2013). Psychology and Psychotherapy:
Theory, Research and Practice.
Monitor, assess and control
their thinking
• 
• 
• 
• 
Rumination
Worry
Threat monitoring
Unhelpful coping
(Wells et al, 2000)
(Wells et al, 2000)
•  Overprotective
•  Controlling
•  Threat
monitoring
•  Worry
•  Rumination
Symptoms/
difficulties
“Thinking about the problem
helps me solve it”
“Worrying helps me being
prepared ..”
“I need to control..”
“it’s bad to think ..”
“I must avoid thinking ..
(Unhelpful)
Coping
Psychological
distress in
caregivers
MCQ-30
Metacognitions found relevant
to a range of disorders
Depression (Papageorgiou, 2001)
GAD (Wells, 2010)
Psychosis (Morrison & Wells, 2003)
PTSD (Wells & Sembi, 2004)
Alcohol dependence (Spada & Wells, 2005)
Distress in patients with cancer (McNikol et al., 2012)
Metacognitions related to distress and over-involvement
MCQ-1:Positive beliefs
about worry
Distress
Overinvolvement
.13
.22
MCQ-2:Uncontrollability .42**
.39**
MCQ-3: Cognitive
confidence
.22*
.33**
MCQ-4: Need to control .26**
thoughts
.21**
MCQ-5: selfconsciousness
.09
.09
Note: N = 127 *p > .05. **p > .01
Jansen et al. (2014). Clinical Psychology and Psychotherapy.
Overinvolvement
.45*
1.43*
Metacognitions
Distress
.80* (1.45*)
Note: Mediation analysis using non-parametric bootstrapping
(Hayes, 2013; Preacher and Hayes, 2004, 2008)
N = 124 *p > .001
Jansen et al. (2014). Clinical Psychology and Psychotherapy.
Summary of findings
1.  Family members report high levels of distress
2.  Associated with over-involvement, metacognitions and
subjective appraisal of the caregiving situation
3.  Specific metacognitions seem to be directly related to
distress and indirectly via unhelpful coping strategies,
such as rumination, worry and threat monitoring.
4.  Reflective capacity related to a more balanced view,
including seeing more positive aspects of the
caregiving situation
Limitations
1.  Self-report measures
2.  Cross-sectional design does not allow
for firm causal interpretations
3.  Inclusion was based on service-user
consent
Clinical implications
Possible new ways of supporting family members
1.  Subjective appraisals and over-involved coping as
known from the classic CBT-tradition.
2.  Helping caregivers to develop more complex accounts
of the caregiver experience, allowing for both positive
and negative views.
3.  Interventions from the contextual behaviour science,
such as acceptance and mindfulness-based
approached, to target excessive worry and rumination.
Resilience
Meaning
Optimism
Hope
Model of Psychological
variables in caregiver distress
Social
support
Coping
Metacognition
Symptoms
Difficulties
Avoidance
Over-involvement
Criticism
Rumination
Worrying
Controlling
Acceptance
Metacognitive
capacity
Maladaptive
metacognitions
Family
wellbeing
Patient
wellbeing
Appraisal
Complex trauma, loss and grief
Contextual interventions
Leff et al, 1982
Vaughn et al, 1986
Falloon et al, 1982
McFarlane et al, 1995
Pitschel-Walz et al, 2004
Pfamatter et al, 2006
Pharoah et al, 2006
Pilling et al, 2010
Structured family work
•  Problem solving
•  Conflict management
•  Coping skills
Regular meetings with case-managers
Information (psyko-edukation)

Towards a Better Understanding of Caregiver Distress in First

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