Relatives’ Education And Coping Toolkit
description
Transcript of Relatives’ Education And Coping Toolkit
![Page 1: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/1.jpg)
Relatives’ Education And Coping Toolkit
![Page 2: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/2.jpg)
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
![Page 3: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/3.jpg)
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]
Supporters• Natasha Lyon• Andrea Walker• Warren Gould• Stephen Pilling• Dave Glentworth
TSC – Chair – Prof Karina Lovell
![Page 4: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/4.jpg)
Overview
• Background and rationale for study
• Brief methodology
• Outcomes
• Future directions
![Page 5: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/5.jpg)
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 senseWinefield et al 1993, Barrowclough et al 1996Tennakoon et al 2000, Lowyck et al 2004Buckner and Yeandle 2011Arksey et al 2003
![Page 6: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/6.jpg)
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, 2010NICE, 2002, 2006, 2009 Justo et al.2007
![Page 7: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/7.jpg)
Great!
So what’s the problem?
![Page 8: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/8.jpg)
Problems1. 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?
![Page 9: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/9.jpg)
Solution?
![Page 10: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/10.jpg)
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 conditionsBarlow et al 2002
![Page 11: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/11.jpg)
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?”
![Page 12: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/12.jpg)
REACT
3 Phases
Phase 1 = Develop self management intervention
Phase 2 = Feasibility trial – relatives’ outcomes
Phase 3 = Modify and disseminate
![Page 13: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/13.jpg)
Phase 1 – Develop the Toolkit
Systematic 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
![Page 14: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/14.jpg)
![Page 15: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/15.jpg)
REACT intervention
• Toolkit – 13 modulesIntroduction to REACTWhat is Psychosis?Managing Positive SymptomsManaging Negative SymptomsDealing with CrisesDealing with Difficult BehaviourManaging Stress – Thinking DifferentlyManaging Stress – Doing Things DifferentlyUnderstanding Mental Health Services (how to
get the help you need)Treatment OptionsThe Future Resource DirectoryJargon Buster
• Support
STR workers
6 months
One face to face meeting
Email / telephone support
Flexible to need – up to 1 hr per week
![Page 16: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/16.jpg)
Phase 2 = RCT to assess
– How feasible in NHS?– How acceptable to relatives?– Estimate impact?
![Page 17: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/17.jpg)
Outcome Measures
• Primary – Distress (General Health Questionnaire)
• Secondary– Carer wellbeing Scale (Rethink)– Experience of Care-giving (ECI – Szmukler et al.)
![Page 18: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/18.jpg)
Statistical Analysis
• Intention to treat
• ANCOVA controlling for baseline scores and clinical team
• P<.05
![Page 19: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/19.jpg)
REACT Consort Flow Diagram
![Page 20: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/20.jpg)
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
![Page 21: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/21.jpg)
Main Outcome - GHQ
GHQ Baseline mean (SD) FU mean (SD)
REACT 34.21 (15.67) 23.42 (15.2)
TAU 34.07 (19.00) 28.30 (15.42)
RC = -6.59 P = 0.03 95%CI = -12.55 to -0.64
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
![Page 22: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/22.jpg)
Outcome – CWS - wellbeing
• Esgs
Wellbeing increases in both arms – bit more in REACT but diff just fails to reach statistical significance
CWS - wellbeing Baseline mean (SD) FU mean (SD)
REACT 77.91 (27.27) 89.61 (29.71)
TAU 70.46 (31.44) 79.50 (32.47)
RC = +9.77 P = 0.053 95%CI =-0.141 to +19.68
![Page 23: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/23.jpg)
Outcome – CWS -support
• Esgs
Support increases in both arms – significantly more in REACT
CWS - wellbeing Baseline mean (SD) FU mean (SD)
REACT 32.72 (11.86) 39.60 (10.31)
TAU 28.10 (11.05) 33. 89 (12.19)
RC = +4.86 P = 0.021 95%CI =0.77 to 8.96
![Page 24: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/24.jpg)
Outcome – ECI negative
Negative EC has gone down on both arms – no sig diff
Baseline mean (SD) FU mean (SD)REACT 95.00 (33.94) 85.53 (43.69)
TAU 108.43 (35.42) 100.91 (34.93)
RC = -9.79 P = 0.126 95%CI = -22.41 to +2.83
![Page 25: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/25.jpg)
Outcome – ECI - positive
ECI - pos Baseline mean (SD) FU mean (SD)
REACT 28.39 (8.59) 30.7 0(10.56)
TAU 29.68 (9.60) 30.64 (9.28)
RC = +0.87 P = 0.593 95%CI =-2.36 to 4.09
Positive EC has gone up in both arms but changes small and not significant
![Page 26: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/26.jpg)
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’
![Page 27: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/27.jpg)
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
![Page 28: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/28.jpg)
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
![Page 29: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/29.jpg)
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)
![Page 30: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/30.jpg)
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
![Page 31: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/31.jpg)
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
![Page 33: Relatives’ Education And Coping Toolkit](https://reader036.fdocuments.us/reader036/viewer/2022062501/568166cf550346895ddade08/html5/thumbnails/33.jpg)
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?