Relatives’ Education And Coping Toolkit

1. Relatives’ Education And Coping Toolkit

2. Systematic review to identify the key components of effective interventions for relatives of people with psychosis Fiona Lobban, Adam Postlethwaite & REACT team

3. REACT Grant 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

4. Main Aim of REACT To develop a supported self management package for relatives of people experiencing first episode psychosis 3 Phases Phase 1 = Develop self management intervention Phase 2 = Feasibility trial – relatives’ outcomes Phase 3 = Modify and disseminate

5. Phase 1 Systematic review “what works?” Focus Groups “what are people saying they need?” Our “expert” opinion? How does this feed in? Intervention Reference Group CBT principles -understanding is key -personalised -build on existing strategies -self as agent of change -recovery focussed

6. 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)

7. Systematic review- key questions Key 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)

8. Method Search 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 lists Cross reference with Cochrane reviews

9. 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)

10. 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 121 articles appear to meet inclusion criteria. Searched for terms control OR controlled OR comparison OR trial. 67 articles excluded on new search criteria 11 articles excluded as no carer outcomes reported 54 article abstracts appear to meet criteria. Each full article read by two independent people. 1 article excluded as no comparison group 2 articles excluded as not evaluating an intervention designed for carers 40 articles meet inclusion and exclusion criteria and so included in review. 4 papers identified from Cochrane review update 8 articles identified from reference lists as meeting inclusion criteria 53 articles meet inclusion and exclusion criteria and so included in review. 1 paper identified in unrelated literature search

11. Main outcomes

12. Key components

13. Additional factors that might distinguish effective and non-effective studies?

14. Clinical baseline score – relatives? Chi Square (1, N = 50) = 0.255, p = 0.683

15. Relatives outcomes main focus of study? Chi Square (1, N = 50) = 1.020, p = 0.502

16. SU present? Chi Square (1, N = 50) = 0.611, p = 0.520

17. Methodological Quality

18. Methodological quality – does it account for variation?

19. 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

20. Conclusions Lots of exciting work to do! • Well designed trials • CTAM as a guide? • Aimed at agreed outcomes • Consensus task? • Testing well defined interventions • Dismantling studies?

21. www.reactstudy.co.uk Thank you! f.lobban@lancs.ac.uk a.postlethwaite@lancs.ac.uk