towards a better understanding of caregiver distress in first

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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


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•  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)


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


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


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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



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)


“There is nothing either good or bad, but thinking makes it so”.

(Shakespeare, Hamlet)

Cognitive Behaviour Therapy

Self World Future


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)


(adapted from Choi-Kain & Gunderson, 2008)

Metacognition


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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?


Self-reflectivity Understanding others Decentration Mastery

MAS-A


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.


(Wells et al, 2000)

Monitor, assess and control their thinking

•  Rumination •  Worry •  Threat monitoring •  Unhelpful coping


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



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)


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


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.


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.

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



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

towards a better understanding of caregiver distress in first

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