relatives’ education and coping toolkit systematic review to identify the key components of...
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Relatives’ Education And Coping Toolkit
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Systematic review to identify the key components of effective interventions for relatives of
people with psychosis
Fiona Lobban, Adam Postlethwaite & REACT team
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REACTGrant Holders• Fiona Lobban (PI - Spectrum [email protected])• David Glentworth (CI – GMW)• Vanessa Pinfold (Rethink)• Warren Larkin (LCT)• Relative, LCT- anonymous• Graham Dunn (Manchester University)• Gillian Haddock (Manchester University)
Researchers• Laura Wainwright • Anna Clancy• Adam Postlethwaite – [email protected]
TSC – Chair – Prof Karina Lovell
Funders• This study is funded by NIHR – research for patient benefit. However, the views
and opinions expressed within it do not necessarily reflect those of DH/NIHR
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Main Aim of REACTTo develop a supported self management
package for relatives of people experiencing first episode psychosis
3 PhasesPhase 1 = Develop self management
interventionPhase 2 = Feasibility trial –
relatives’ outcomes Phase 3 = Modify and disseminate
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Phase 1Systematic review“what works?”
Focus Groups“what are people saying they need?”
Our “expert” opinion?How does this feed in?
Intervention Reference GroupCBT principles-understanding is key-personalised-build on existing strategies-self as agent of change-recovery focussed
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What has already been done?
Cochrane Review - Family intervention for schizophrenia. (Pharoah, Mari, Rathbone, Wong 2010 update)
– Interventions with relatives of people with schizophrenia – 5+ sessions, compared to standard care– Primary outcomes –all for service users– Reduce relapse and hospital admission (but methodologically weak)
Findings for relatives outcomes• Secondary family outcomes – very numerous• Conflicting results • Some evidence that can reduce EE (but methodologically weak)
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Systematic review- key questionsKey Questions
• Do family interventions work for relatives?
More specifically…..– What outcomes do they work on?– What are the key components in the ones that work?– Which factors (other than content) distinguish the ones that
work from the ones that don’t?– What methodological issues do we need to be aware of?
NB -Not specifically first episode (too limited)
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MethodSearch Strategy
– Electronic databases / references lists / experts – 2 independent reviewers
• Inclusion– Peer reviewed– Evaluated intervention designed to support carer or relatives of
people with schizophrenia or psychosis– Controlled study ie compared to something– Outcomes reported for carers
• Exclusion– Reviews / case studies / discussion papers– Not in English
Hand search reference listsCross reference with Cochrane reviews
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Data extracted
• Effectiveness & outcomes • Intervention components questionnaire
• Extracted key components & delivery methods• 1 = no 2 = not main focus 3 = main focus
• Additional factors– Were relatives outcome main focus of study?– Were relatives selected for clinical baseline scores?– Therapy Factors – length, SU present, therapist training?
• Clinical Trials Assessment Measure – CTAM (Tarrier & Wykes 2004)– Rate methodological quality of trial (0-100)
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MEDLINE, AMED, PsycINFO and CINAHL databases were
searched using the predetermined search terms
755 articles identified and abstracts read
634 articles excluded as did not meet inclusion criteria
54 article abstracts appear to meet criteria. Each full article read by two independent people.
11 articles excluded as no carer outcomes reported 1 article
excluded as no comparison group2 articles excluded as
not evaluating an intervention designed for carers
8 articles identified from reference lists as meeting inclusion criteria
53 articles meet inclusion and exclusion criteria and so included in review.
121 articles appear to meet inclusion criteria. Searched for terms control OR controlled OR comparison OR trial.
67 articles excluded on new search criteria
40 articles meet inclusion and exclusion criteria and so included in review.
4 papers identified from Cochrane review update
1 paper identified in unrelated literature search
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Main outcomesOutcomes Number of effective
interventionsNumber of non-effective interventions
Relatives' emotional response
5 (26%) 14 (74%)
Relatives coping & problem solving skills
6 (40%) 9 (60%)
Perceived social support and resources
8 (47%) 9 (53%)
Relatives Needs 2 (29%) 5 (71%)
Relatives' Burden 11 (58%) 8 (42%)
Family Functioning 6 (67%) 3 (33%)
Family attitudes, beliefs and knowledge
9 (47%) 10 (52%)
Emotional response to patient e.g. EE
9 (36%) 16 (64%)
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Key componentsComponents Effective Not Effective Chi Sq (1, 47)Psychoeducation IIIIIIIIIIIIIIIIIIIIIIIIIIIII IIIIIIIIIIII 0.415, p = 0.519
Normalisation IIIIIIIIIIIIIII IIIIII 0.016, p = 0.900
Information about treatment IIIIIIIIIIIIIIIIIIIIIIIIII IIIIIIIIIII 0.372, p = 0.542
Managing Problem Behaviours IIIIIIIIIIIIIIIIIIIIIIIII IIIIIIIIIII 0.645, p = 0.422
Setting Realistic Expectations IIIIIIIIIIIIIIIIIIII IIIIIII 0.095, p = 0.758
Info about Community Resources IIIIIIIII IIIII 1.677, p = 0.195
Problem Solving Training IIIIIIIIIIIIIIIIIIIIIIII IIIIIII 1.174, p = 0.279
Communication Training IIIIIIIIIIIIIIIIII IIIII 1.142, p = 0.285
Importance of Low Stress Environment IIIIIIIIIIIIIIIIIIIIII IIIIIIII 0.156, p = 0.693
Stress Management for Relatives IIIIIIIIIIIIIIII IIIIII 0.056, p = 0.813
Challenging Unhelpful Beliefs IIIIIIIIIII IIIIIII 1.838, p = 0.175
Relapse Prevention IIIIIIIIIIIIIIIIIIIII IIIIIIIII 0.227, p = 0.634
Acceptance of Emotional Response IIIIIIIIIIIIIII IIIII 0.123, p = 0.726
Impact on Family IIIIIIIIIIIIIIIIIIIIII IIIIIIII 0.156, p = 0.693
Reducing EE IIIIIIIIIIIIIIIIII IIIII 0.789, p = 0.374
Dealing with Stigma IIIIIIIII II 0.645, p = 0.422
Maintaining Social Networks IIIIIIIIIIIIIIIII IIII 1.407, p = 0.236
Vocational Rehabilitation IIIIIII I 1.107, p = 0.293
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Additional factors that might distinguish effective and non-
effective studies?
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Clinical baseline score – relatives?
Were participants selected for being over a clinical / high level threshold? e.g. High Expressed Emotion (EE), high distress
etc
TotalNo Yesdid the intervention have any positive effect on any outcome variable - post treatment?
no 12 3 15
yes 30 5 35
Total 42 8 50
Chi Square (1, N = 50) = 0.255, p = 0.683
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Relatives outcomes main focus of study?
Were relatives' outcomes the main focus
of the study?
TotalNo Yesdid the intervention have any positive effect on any outcome variable - post treatment?
no 3 12 15
yes 12 23 35
Total 15 35 50
Chi Square (1, N = 50) = 1.020, p = 0.502
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SU present?
Chi Square (1, N = 50) = 0.611, p = 0.520
Was the SU present/involved during the
intervention/therapy?
TotalNo Yesdid the intervention have any positive effect on any outcome variable - post treatment?
no 7 6 13
yes 14 20 34
Total 21 26 47
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Methodological QualitySample size
(10)Allocation
(16)Assessment
(32)Control Groups
(16)
Analysis (15)
Active Treatment
(11)
1980s 2.6 (2.0) 8.0 (6.1) 13.1 (11.2) 9.1 (4.3) 6.7 (3.3) 5 (1.5)
1990s 5.8 (3.6) 8.6 (5.4) 11.4 (7.8) 8.1 (2.9) 7.9 (4.4) 6.1 (1.9)
2000s 6.2 (3.4) 10.9 (5.1) 16.8 (9.8) 7.9 (3.8) 9.6 (2.7) 5.6 (1.8)
Overall 5.4 (3.5) 9.6 (5.4) 14.4 (9.6) 8.2 (3.5) 8.5 (3.5) 5.6 (1.8)
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Methodological quality – does it account for variation?
Effective (35) Not Effective (15) T-test
Sample Size & Recruitment (10)
5.7 (3.5) 4.8 (3.6) t(48) = -0.80, p = 0.43
Allocation (16) 9.5 (5.4) 10.0 (5.7) t(48) = 0.29, p = 0.78
Assessment (32) 13.7 (9.8) 16.0 (9.3) t(48) = 0.77, p = 0.45
Control Groups (16) 8.1 (3.3) 8.5 (4.1) t(48) = 0.43, p = 0.67
Analysis (15) 8.5 (3.6) 8.7 (3.6) t(48) = 0.25, p = 0.80
Active Treatment (11)
5.7 (1.4) 5.5 (2.5) t(17.9) = -0.36, p = 0.72
CTAM Total (100) 51.1 (16.8) 53.5 (17.2) t(48) = 0.46, p = 0.65
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Key Questions – the answers
• Do family interventions work for relatives?YES!! …….but– What outcomes do they work on? Not clear– What are the key components in the ones that
work? Lots of good stuff – but also don’t work– Which factors (other than content) distinguish the
ones that work from the ones that don’t? None that we looked at
– What methodological issues do we need to be aware of? Trial quality very poor
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ConclusionsLots of exciting work to do!
• Well designed trials• CTAM as a guide?
• Aimed at agreed outcomes• Consensus task?
• Testing well defined interventions• Dismantling studies?