Relatives’ Education And Coping Toolkit

Systematic review to identify the key components of effective interventions for relatives of

people with psychosis

Fiona Lobban, Adam Postlethwaite & REACT team

REACTGrant Holders• Fiona Lobban (PI - Spectrum f.lobban@lancaster.ac.uk)• 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 – a.postlethwaite@lancaster.ac.uk

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

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

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

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)

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)

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

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)

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

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%)

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

Additional factors that might distinguish effective and non-

effective studies?

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

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

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

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)

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

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

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?

www.reactstudy.co.uk

Thank you!f.lobban@lancs.ac.uk

a.postlethwaite@lancs.ac.uk