towards a better understanding of caregiver distress in first
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Overskrift her Navn på oplægsholder Navn på KU-enhed
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Jens Einar Jansen - PhD viva 2014
Jens Einar Jansen University of Copenhagen & Early Psychosis Intervention Center
Towards a Better Understanding of Caregiver Distress in First-Episode Psychosis: A Study of Psychological Factors
Outline 1. Background 2. Design and measures 3. Results 4. Clinical implications
Jens Einar Jansen - PhD viva 2014
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Overskrift her
For at ændre ”Enhedens navn” og ”Sted og dato”: Klik i menulinjen, vælg ”Indsæt” > ”Sidehoved / Sidefod”. Indføj ”Sted og dato” i feltet for dato og ”Enhedens navn” i Sidefod
Jens Einar Jansen - PhD viva 2014
Jens Einar Jansen - PhD viva 2014
• 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)
Jens Einar Jansen - PhD viva 2014
Family members
Psychotic illness
2/3 significantly distressed 1/3 mild depression 1/3 PTSD Experiences such as anxiety, sadness, grief, anger, guilt, economic strain …
(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)
Expressed Emotion • Criticism • Over-involvement Positive family environment
Jens Einar Jansen - PhD viva 2014
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)
Jens Einar Jansen - PhD viva 2014
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?
Jens Einar Jansen - PhD viva 2014
Four areas of interest
1. Subjective appraisal
2. Emotional involvement
3. Metacognitive capacity
4. Unhelpful metacognitive beliefs
Jens Einar Jansen - PhD viva 2014
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
Tekst starter uden punktopstilling For at få punkt-opstilling på teksten, brug forøg indrykning For at få venstre-stillet tekst uden punktopstilling, brug formindsk indrykning
Overskrift her
For at ændre ”Enhedens navn” og ”Sted og dato”: Klik i menulinjen, vælg ”Indsæt” > ”Sidehoved / Sidefod”. Indføj ”Sted og dato” i feltet for dato og ”Enhedens navn” i Sidefod
Jens Einar Jansen Ulrik Haahr Susanne Harder Marlene Buch Pedersen Hanne-Grethe Lyse Anne Marie Trauelsen Mette Sjøstrøm Petersen Christopher Trier Lind Erik Simonsen
Early Psychosis Intervention Center
Jens Einar Jansen - PhD viva 2014
Jens Einar Jansen - PhD viva 2014
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) Metacognitions Questionnaire (MCQ-30; Wells & Cartwright-Hatton, 2004)
Positive and Negative Syndrome Scale for Schizophrenia (PANSS; Kay et al,, 1987) Global Assessment of Functioning Scale (GAF; APA, 1987)
Jens Einar Jansen - PhD viva 2014
“There is nothing either good or bad, but thinking makes it so”.
(Shakespeare, Hamlet)
Cognitive Behaviour Therapy
Self World Future
Jens Einar Jansen - PhD viva 2014
What predicts the level of distress?
Appraisals and expressed emotion?
OR Patients’ symptoms or level of functioning?
Jens Einar Jansen - PhD viva 2014
Over-involvement and criticism related to distress
Jansen et al. (2014). Soc. Psych. Psychiatr. Epid.
Jens Einar Jansen - PhD viva 2014
Linear mixed-models analysis with distress as outcome
Jens Einar Jansen - PhD viva 2014
“ … 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.
Jens Einar Jansen - PhD viva 2014
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)
Jens Einar Jansen - PhD viva 2014
(adapted from Choi-Kain & Gunderson, 2008)
Metacognition
Tekst starter uden punktopstilling For at få punkt-opstilling på teksten, brug forøg indrykning For at få venstre-stillet tekst uden punktopstilling, brug formindsk indrykning
Overskrift her
For at ændre ”Enhedens navn” og ”Sted og dato”: Klik i menulinjen, vælg ”Indsæt” > ”Sidehoved / Sidefod”. Indføj ”Sted og dato” i feltet for dato og ”Enhedens navn” i Sidefod
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?
Jens Einar Jansen - PhD viva 2014
Self-reflectivity Understanding others Decentration Mastery
MAS-A
Jens Einar Jansen - PhD viva 2014
Jens Einar Jansen - PhD viva 2014
Jens Einar Jansen - PhD viva 2014
Metacognition and caregiver experience
Jansen et al. (2013). Psychology and psychotherapy: Theory, Research and Practice.
Jens Einar Jansen - PhD viva 2014
“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.
Jens Einar Jansen - PhD viva 2014
(Wells et al, 2000)
Monitor, assess and control their thinking
• Rumination • Worry • Threat monitoring • Unhelpful coping
Jens Einar Jansen - PhD viva 2014
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 ..
Psychological distress in caregivers
(Unhelpful) Coping
(Wells et al, 2000) • Over-
protective • Controlling • Threat
monitoring • Worry • Rumination
MCQ-30
Jens Einar Jansen - PhD viva 2014
Jens Einar Jansen - PhD viva 2014
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)
Jens Einar Jansen - PhD viva 2014
Distress Over-involvement
MCQ-1:Positive beliefs about worry
.13 .22
MCQ-2:Uncontrollability .42** .39**
MCQ-3: Cognitive confidence
.33** .22*
MCQ-4: Need to control thoughts
.26**
.21**
MCQ-5: self-consciousness
.09 .09
Note: N = 127 *p > .05. **p > .01 Jansen et al. (2014). Clinical Psychology and Psychotherapy.
Metacognitions related to distress and over-involvement
Jens Einar Jansen - PhD viva 2014
Over-involvement
Meta-cognitions Distress
.45*
.80* (1.45*)
1.43*
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.
Jens Einar Jansen - PhD viva 2014
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
Jens Einar Jansen - PhD viva 2014
Limitations
1. Self-report measures
2. Cross-sectional design does not allow for firm causal interpretations
3. Inclusion was based on service-user consent
Jens Einar Jansen - PhD viva 2014
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.
Symptoms Difficulties
Coping Avoidance
Over-involvement Criticism
Rumination Worrying
Controlling Acceptance
Meta- cognition
Metacognitive
capacity
Maladaptive metacognitions
Patient well-being
Family well-being
Appraisal
Resilience Meaning Optimism
Hope
Social support
Model of Psychological variables in caregiver distress
Jens Einar Jansen - PhD viva 2014
Jens Einar Jansen - PhD viva 2014
Complex trauma, loss and grief Contextual interventions Structured family work
• Problem solving • Conflict management • Coping skills
Regular meetings with case-managers Information (psyko-edukation)
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
Jens Einar Jansen - PhD viva 2014
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