1. In-Sight: training Paris, le 11/12 fevrier 2010 Dr Heather Straughan, PhD, MSc Research Methods, BSc (hons) Psychology DESS Commerce International, Maitrise & Licence Langues Etrangeres Appliquees au Commerce, Lille III Director, The Recovery In-Sight Centre (h.straughan@btinternet.com) (44) 1923-239489h.straughan@btinternet.com http://www.recoveryin-sight.com Dr Jan Wallcraft, PhD Senior Researcher, The Recovery In-Sight Centre

2. In-Sight - a holistic recovery from bipolar disorder Background to the research In-Sight: bipolar, recovery, training content PhD study design & methodology, outcomes Delivering In-Sight in the community, outcomes Your questions

3. Background to the Research Self-management in the UK * 1997-2000: Strategies for Living - need for recognition of user expertise & individuals have their own way of coping * 1998: MDF starts group self-management programme * 1999: Expert Patients Task Force set up by government and in 2001: Report published - The Expert Patient * 2001: Rethink self-management project towards recovery (Argos 2001 started in France for bipolar disorder) * Since then: Whole Life, Personalisation, Recovery, Individual Budgets. * 2009 New Horizons - recommendation for more user involvement. * 2002: In-Sight training starts - towards a holistic approach for recovery which values personal experience of mental health challenges & effective traditional therapies, peer-delivered in a group format

4. What is bipolar disorder? GOING LOWGOING HIGH Sleep (+ or -)Sleep (-) Appetite (+ or -)Appetite (-) Weight (+ or -)Weight (-) Activity levels (-)Activity (+) Memory/concentration(-)Creativity (+) Social/Self-confidence (-)Social/Confidence (+) Negative thoughts (+)Goal-directed acts (+) Mood/Pleasure (-)Mood/Risk taking (+) Pessimism (+)Grandiosity (+)

5. What is recovery? - A deeply personal, unique process of changing ones attitudes, values, feelings, goals and/or roles … a way of living a satisfying, hopeful and contributing life even with the limitations caused by the illness..the development of new meaning and purpose in ones life as one grows beyond the catastrophic effects of mental illness (Anthony, 1993). - In-Sight: Social recovery, a growth through the breakdown and also a growing mastering of illness management with resultant reduction of symptoms ie. full recovery.

6. In-Sight - a holistic recovery BIPOLAR DISORDER PSYCHO- EDUCATION COGNITIVE- BEHAVIOURAL THERAPY GROUP THERAPIES SERVICE-USER ILLNESS MANAGEMENT INTERPERSONAL THERAPY SOCIAL RHYTHM THERAPY FAMILY THERAPY MEDICATION + LIFESTYLE COMPONENTS

7. k Looking Back Mood chart Mood recognition & monitoring Stressors & Warning Signs Mood-Thinking-Behaviour Psychosis & Life Stress Examining the Present General coping strategies (highs & lows) Personal coping strategies Medication Lifestyle: sleep, exercise, diet, social, activity, family. Developing skills Moving forward Communication Assertiveness Negative thoughts Positive thinking Relaxation Anger Best lifestyle choices Selecting a goal for change Well-being action plan Weekly activity diary Relapse agreement Self-help group Substance use

8. In-Sight multi-method data collection CASE STUDY CLIENT INTERVIEWS CLIENT QUESTIONNAIRES LINK WORKER INTERVIEWS RESEARCHER OBSERVATIONS CONSULTANT INTERVIEWS CPN & SW INTERVIEWS MEDICAL NOTES

9. Research Methodology - A case study incorporating an experimental design: 2 training groups (13) + control group (6) - Research stages - pilot & main study. Seasonal considerations. - Study setting - day centre/church hall - Sample - DSM IV Bipolar disorder - Multi-method data collection : self-report questionnaires for mood, coping, empowerment & quality of life, participant & mh professional interviews, medical notes, researcher observations - Data collection: Pre-, post- & 6 months post-training - 10 weeks (pilot) => 12 weeks (main study). Now 16 weeks. - 3 hours/session. Co-facilitator for main study.

10. Outcomes at 6 months 13 participant questionnaires - Greater mood stability - fewer symptoms - Improved coping - Greater empowerment - Improved quality of life - 10 Bipolar participants : greater improvements & sustainable for longer compared to 3 non-bipolars

11. Outcomes at 6 months 6 control questionnaires - Unstable mood, symptoms worsened - Poorer coping - Unstable empowerment (linked to mood) - Quality of life slight improvement - Of 6 controls: - 2 gradually improved, although greater time needed - 2 gradual worsening of health with risk of relapse - 2 major relapse (depression with psychosis)

12. Recovery & Development Maintaining Wellness Mood Stability Coping Intellectual Challenge & Change of Perspective/Responsibility User Led - Group - Mood Management Lifestyle Change & Structure Interaction: Model & Empowerment, QOL & Self Over Time Skills Development Outcomes - qualitative data

13. In-Sight training - in the community * October 2008 - April 2010: 4 courses run in the community. 5th in process * Peer-trainers, Pttls qualified & In-Sight trained * Methods of evaluation (focus groups & self-report questionnaires, pre & post course. Post-course satisfaction questionnaire). * 22 course members took part in the focus groups (18 women, 4 men. 17 users, 5 carers) ( & 12 other course members, data to be analysed) * 7 women trained as In-Sight trainers (3 carers, 4 users)

14. Research Questions - focus groups Questions asked before the course started Hopes - course members wanted: Information and greater insight Coping strategies to manage and prevent illness Ability to help family member and/or others Knowing about recovery and moving on Social improvement Fears - trainees concerns about the course The course might trigger problems Will the course be too long or difficult Will there be help and information for carers ?

15. Research outcomes - focus groups How far did the course meet hopes & expectations? All enjoyed the course very much. Beyond expectations (1)Information and Coping strategies –all members learned a lot. 18 said they could cope better with their high and low moods and problems (2)Recovery – 6 had new ways to improve their lives and move forwards in health and activities (3)Helping others – 4 carers could understand and support the family member and others better (4)Social & peer support – 11 especially valued the peer support and socialising with the trainee group

16. Research outcomes - focus groups Information - I ve read many self help books and found the material in the course far exceeded anything I d read. Coping strategies and managing the illness better - As a result of the course and the homework, I can honestly say my mental health condition as a manic depressive, through self management, is under the best control ever in 7 years since I was diagnosed. - I ve been high and low in the last few weeks - I realized there were tools I could use, and I actually put into practice the tools and found they worked Recovery and moving on - This course has given me techniques that will help if I go back to my occupation. Tools of the course - I found the course extremely detailed and comprehensive, and full of useful tools to manage bipolar illness - The handbook is in language to be understood by all members of population Social aspect/peer support - We all get on and care for each other Carers - The course has made me more aware of what it is like to be bipolar. - It has helped me to feel a lot more patience with my son and people around me as well

17. Research outcomes - trainers Focus group with trainers (7 women: 3 carers, 4 users) Basically a good experience as a trainer (all agreed) - I think it gave me as much back being a trainer as being on the course. 1. Good to see how the trainees improved (4 mentioned this) - It was really good to see how much they had advanced. 2. How well prepared were you to be a trainer? (all said they were well prepared) - Having done the course – it grounds us in tools and techniques so it becomes quite natural to pass them on. The course notes are so good. 3. Support and organisation – all said the course was well organised & they got enough support 4. Personal development e.g. with own recovery or caring from being a trainer on the course (all felt they had gained personally) - The teaching gave me more confidence, the continued reading of the Handbook reinforced my learning. - Carer – it enabled me to make sure I look after myself. Problems: having only a small number of training sessions (7 new trainers for 16 sessions) - One thing I did find difficult was the length of time between seeing everyone.

18. Research outcomes - questionnaires Self-report questionnaires (Likert scale 1-7) on items: Increased knowledge about bipolar disorder & recovery better coping and recognition of warning signs more knowledge and use of medication healthier lifestyle improved assertiveness better anger management more positive thinking & more able to ward off neg. thoughts greater empowerment or control over situations greater social support network better relationships with their mental health team increased use of support via self-help groups increased level of self-confidence and self-esteem better quality of life & more hopeful for the future => Increase from 2 (pretty poor knowledge/skills) to 5 (good knowledge/skills). Increase from 3 (modest) to 6/7 (very good/excellent)

19. Research outcomes - satisfaction questionnaires 10 out of 10 for use of materials & group delivery: the Behaviour-Thought-Mood chart Coping skills for low and high moods Healthy lifestyle components Skills training Well-being action plan Well-being activity diary Behaviour-thought-mood diary group interaction and learning course materials experience of the trainers general organisation of the training

20. Outcomes - summary The majority self-manage well All develop interests (voluntary work, leisure, study) Several return to full-time study (nursing, nutrition) Many involved in the In-Sight project (trainers, office workers, volunteers) Some return to work elsewhere (part or full-time) Some change jobs (that are more accommodating to m.h. needs) Many more open about m.h. needs to current employers Creation of The Recovery In-Sight Centre, May 2009 (trainers, researchers, self-help facilitators). User-led, empowerment, wellbeing at work, self-management.

21. Vos questions In-Sight training Dr Heather Straughan Director, The Recovery In-Sight Centre h.straughan@btinternet.com (44) 1923-239489 http://www.recoveryin-sight.com Dr Jan Wallcraft Senior Researcher, The Recovery In-Sight Centre Janet.wallcraft@yahoo.co.uk