Relatives’ Education And Coping Toolkit

1. Relatives’ Education And Coping Toolkit

2. Main Aim of REACT To develop a supported self management package for relatives of people experiencing first episode psychosis (inc bipolar) 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

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 Supporters • Natasha Lyon • Andrea Walker • Warren Gould • Stephen Pilling • Dave Glentworth TSC – Chair – Prof Karina Lovell

4. Overview • Background and rationale for study • Brief methodology • Outcomes • Future directions

5. Background • Impact on relatives – lots of research showing • high levels of distress (from early stage) • practical & financial burden • stigma, worry, shame, guilt, trauma, bereavement • Government (UK) committed to support relatives • Carers contribute £119billion > total NHS costs £99 billion. • 24% are caring for someone with mental health problems. It is morally right to support carers – but it also makes financial sense Winefield et al 1993, Barrowclough et al 1996 Tennakoon et al 2000, Lowyck et al 2004 Buckner and Yeandle 2011 Arksey et al 2003

6. Background • Evidence that Family interventions work for schizophrenia • Reduce relapse rates, admissions and impairment • NICE (2009) recommend “Offer family intervention to all families of people with schizophrenia who live with or are in close contact with the service user” • Cochrane Review of Family Interventions in Bipolar • 7RCTs – no conclusions – need more studies • NICE recommend for Bipolar (2006) “Carers and relatives should also be provided with the information and support they need” Pharoah et al 2006, 2010 NICE, 2002, 2006, 2009 Justo et al.2007

7. Great!So what’s the problem?

8. Problems 1. FI improves outcome for service users....but does this necessarily improve outcome for relatives? • Most trials in Cochrane review have no relatives’ outcomes or secondary 2. FI not always available • 3-17% (London unpublished) 3. Evidence for effectiveness at first episode is less clear • Meta-analysis of RCTs of FI for first episode (Bird et al 2010) • SUs less likely to relapse or be admitted at end of treatment • BUT • Lack of trials (n = 3) • Some evidence may have negative impact for low EE families • Linszen et al (1996) Lenior et al (2001) • Some evidence difficult to engage first episode families • TIPS - multifamily groups (Fjell et al 2007) Maybe structured Family Intervention is too intensive for some first episode families? Could we be interfering with natural process of adjustment?

9. Solution?

10. Supported Self Management • Self management = “tasks a patient [relative] can perform to minimise the impact of that illness on his/her health status by him/herself or with the support of a healthcare provider” • Theoretically based on Bandura’s (1977) model of self efficacy • Evidence for effectiveness in range of physical and mental health conditions • Government priority for long-term health problems • Expert patient program • IAPT Clark 1991, Wanless report 2002 DoH 2005 – supporting people with longterm conditions Barlow et al 2002

11. Self Management for relatives of people with psychosis • Self help materials exist that useful for relatives eg www.mentalhealthcare.org.uk BUT • Generally developed by health professionals – rather than relatives • No good evidence base for whether any of them work • No good understanding of how best to support people to use them • Relatives feedback • “I don’t have the time to find all this” • “How do I assess quality?”

12. REACT 3 Phases Phase 1 = Develop self management intervention Phase 2 = Feasibility trial – relatives’ outcomes Phase 3 = Modify and disseminate

13. Phase 1 – Develop the Toolkit Focus Groups “what are people saying they need?” Systematic review “what works?” 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

15. REACT intervention • Toolkit – 13 modules Introduction to REACT What is Psychosis? Managing Positive Symptoms Managing Negative Symptoms Dealing with Crises Dealing with Difficult Behaviour Managing Stress – Thinking Differently Managing Stress – Doing Things Differently Understanding Mental Health Services (how to get the help you need) Treatment Options The Future Resource Directory Jargon Buster • Support STR workers 6 months One face to face meeting Email / telephone support Flexible to need – up to 1 hr per week

16. Phase 2 = RCT to assess • How feasible in NHS? • How acceptable to relatives? • Estimate impact?

17. Outcome Measures • Primary • Distress (General Health Questionnaire) • Secondary • Carer wellbeing Scale (Rethink) • Experience of Care-giving (ECI – Szmukler et al.)

18. Statistical Analysis • Intention to treat • ANCOVA controlling for baseline scores and clinical team • P<.05

19. REACT Consort Flow Diagram

20. Sample • GHQ = mean 34 = 65% clinical caseness • Age 51 – 55 • F:M = 85: 18 • Mothers 74% • Majority unemployed / retired • White British (97%) • SU = 20-25yrs - 70%male - estimated 60 months since onset • 78% relatives were aware of a diagnosis • 69% = psychosis / schizophrenia • 22.5% = bipolar / mood disorder

21. Main Outcome - GHQ Distress has reduced in both arms – but significantly more so in REACT compared to TAU Effects Size = mean diff / shared standard deviation = 6 / 15 = 0.4

22. Outcome – CWS - wellbeing • Esgs Wellbeing increases in both arms – bit more in REACT but diff just fails to reach statistical significance

23. Outcome – CWS -support • Esgs Support increases in both arms – significantly more in REACT

24. Outcome – ECI negative Negative EC has gone down on both arms – no sig diff

25. Outcome – ECI - positive Positive EC has gone up in both arms but changes small and not significant

26. Qualitative Feedback • Toolkit • Overwhelming preferred paper version • Liked case studies – felt less alone • ‘When I got REACT manual, I felt better because it showed me, it first of all it related to what was going on in my house’ • Support • Telephone and email support used • 31(61%) = telephone only • 6(12%) = email only • 7(14%) = both • Total minutes of support over 6 months = median 125.5 mins (range 0 – 855) • ‘Oh very reassuring. It [support] saved my life I know that sounds melodramatic, but it saved my life, I feel as if it saved my sanity in a way’

27. Recommendations for improvement • Timing • Some felt needed it earlier – but others didn’t. • ‘Unfortunately we were well and truly past needing it, by the time we came to get it’ (008 – 16.1). • ‘When they were all sorted out then I could concentrate you see’ (032 – 9:3). • . • Case studies – more variety please • Step families • Different cultural groups

28. Trial Conclusions • Provides preliminary evidence for the feasibility and effectiveness of REACT: • Relatives and EIS keen to take part • High distress at baseline assessment • High follow-up rate • Participants find REACT acceptable and engaging • Compared to TAU - Significant positive changes on several outcome measures for REACT arm of trial

29. Limitations • This was a small feasibility trial – larger trial needed to assess reliability and generalisability of findings • Impact of REACT on service user outcomes not assessed • Only available in English • No attempt to measure cost-effectiveness (but it’s cheap to deliver)

30. What’s next for REACT? • A larger, more definitive trial to assess clinical and cost effectiveness of the intervention • Process of change? • Cognitive – (IPQ) • Behavioural (Coping) • Adaptation for British Minority Ethnic groups • Adapting REACT for more specific disorders e.g. Bipolar Disorder

31. Conclusion • Supported self management interventions (e.g. REACT) potentially offer increased access to evidence based interventions for relatives • “It’s not very complex is it?” = criticism or compliment? • Easy to deliver – potential to roll out anywhere (with appropriate adaptation) • IAPT SMI • Advantages for some relatives • Non-stigmatising • Accessible to relatives where service user not engaging • Great for busy people • Need appropriate development and evaluation NB = Self management isn’t for everyone • Not everyone needs intensive structured family intervention – but some families do • Part of a tiered approach offering a range of options to meet a range of needs – not cheap way to replace staff

32. Thanks for listening Interested in being a site for large REACT RCT? Contact me f.lobban@lancaster.ac.uk

33. References • Lobban, F., Glentworth, D., Wainwright, L., Pinfold, V., Chapman, L., Larkin, W., Dunn, G., Postlethwaite, A., Clancy, A., & Haddock, G., (2011) Relatives Education And Coping Toolkit - REACT. Study protocol of a randomised controlled trial to assess the feasibility and effectiveness of a supported self management package for relatives of people with recent onset psychosis. BMC Psychiatry 11, 100 • Lobban, F., Glentworth, D., Haddock, G., Wainwright, L., Clancy, A., Bentley, R., (In Press). The views of relatives of young people with psychosis on how to design a Relatives Education And Coping Toolkit (REACT). Journal of Mental Health • Lobban, F., Glentworth, D., Chapman, L., Wainwright, L., Postlethwaite, A., Dunn, G., Pinfold, V., Larkin, W., Haddock, G., (submitted to British Journal of Psychiatry). Feasibility of a supported self management intervention for relatives of people with recent onset psychosis: REACT study  • Lobban, F., Postlethwaite, A., Glentworth, D., Pinfold, V., Wainwright, L., Dunn, G., Clancy, A., Haddock, G. (submitted to Clinical Psychology Review). A Systematic Review of Randomised Controlled Trials of Interventions Reporting Outcomes for Relatives of People with Psychosis • Postlethwaite et al (in prep). Improving Early Intervention in Psychosis Services: Increasing levels of satisfaction amongst carers • Wainwright et al (in prep) The Subjective Experience of using the Relatives Education And Coping Toolkit (REACT): A Qualitative Study of Relatives Feedback • Wainwright et al (in prep) What do Relatives Experience when Supporting Someone in Early Psychosis?