1 st National Personality Disorder Congress Birmingham, 19 November 2009 Workshop ‘Doing Research Together: Breaking Dow

1. 1stNational Personality Disorder CongressBirmingham, 19 November 2009Workshop ‘Doing Research Together: Breaking Down Barriers’ Kati Turner, Service User Researcher, St George’s University of London & Chair of Emergence Ian Griggs, Carer Researcher Marion Neffgen, Clinical Researcher & Psychiatry Specialty Trainee, South West London & St George’s Mental Health Trust Steve Gillard, Academic Researcher, St George’s University of London

2. Workshop: Doing Research TogetherAims of Workshop Experience of collaborative research Reflection on this experience Presentation of our research projects: Carers and Personality Disorder and Recovery and Personality Disorder

3. Workshop: Doing Research TogetherTeambuilding Please get into groups of 6-8 people Choose a group with people you don’t know Everyone should wear at least one hat Some people may want to wear more than one hat At least 3 different hats per group No more than 2-3 people with the same hat in each group Each group please nominate a scribe

4. Your group will be asked to develop a research project about either Personality Disorder & Recovery or Carers and Personality Disorder Workshop: Doing Research TogetherYour research project

5. Workshop: Doing Research TogetherGroup Tasks I Decide on a Title for your research project Things you may want to think about: What is the aim of your project? Who do you want to talk to? Who is the research for?

6. Workshop: Doing Research TogetherGroup Tasks II Think of 3 Questions that you would like to ask in your research Things you might want to think about: Who are you going to ask How you are going to ask these questions Who is going to ask them

7. Workshop: Doing Research TogetherTitles/ CarersTitles/Recovery An exploration of carers‘ attitudes to the benefits of services to their work The carers‘ assessment of services Recovery/ discovery: different steps, different ways Recovery ? Exploring the meaning of recovery for service users, carers and professionals

8. Workshop: Doing Research TogetherQuestions/Carers Questions/Recovery If you received a good service what difference would you notice in your life? Have you got access to special services? What impact does having been ignored have on you? What does recovery mean to you? What does recovery mean to you? What do you need to help your recovery? What helped you recover/ feel happier with yourself?

9. Workshop: Doing Research TogetherQuestions/Carers Questions/Recovery What are the three most helpful aspects of engagement with services? What does recovery mean to you? Is recovery possible and why, or at what level? What influences your understanding of what recovery is?

10. Workshop: Doing Research TogetherReflection How did you decide what the title should be? How did you decide which questions to ask? What did it feel like to work in the groups? How do you think the mixture of hats made a difference to your project?

11. Knowing what it means to care: towards the development of a National Carers’ Strategy for Personality Disorder Project team: Steve Gillard: Academic Researcher & Lead Investigator, St George’s, University of London (SGUL) Alexia Demetriou: Service User Researcher, SGUL Ian Griggs: Freelance Carer Researcher Kati Turner: Service User Researcher, SGUL & Chair of Emergence Kath Lovell: National Project Development Manager, Emergence Stephen Miller: Consultant Psychiatrist in Psychotherapy & Clinical Lead for PD at South West London & St George’s Mental Health NHS Trust (SWL&StG)

12. Developing an understanding of Recovery for people with Personality Disorder living in the community Project team: Steve Gillard: Academic Researcher & Lead Investigator, St George’s, University of London (SGUL) Kati Turner: Service User Researcher, SGUL & Chair of Emergence Marion Neffgen: Psychiatry Specialty Trainee, South West London & St George’s Mental Health NHS Trust (SWL&StG) Kath Lovell: National Project Development Manager, Emergence Stephen Miller: Clinical Lead for PD at South West London & St George’s Mental Health NHS Trust (SWL&StG)

13. Aims and Objectives Phase 1: Contribute to filling knowledge gap through in-depth qualitative exploration of: what it means to care: what are carers’ experiences of support and what are carers’ priorities for support Phase 2: To inform and help develop a National Carers’ Strategy for Personality Disorder Throughout: Service users, carers, academics and clinicians working together as researchers

14. Service user and carer involvement Service users involved in initial identifying and commissioning of research Service user researchers at St George’s involved in developing proposal Proposal further refined through service users on Emergence Board and members of Emergence carers’ support group Service user and carer researchers involved in all aspects of research (design of interview schedule, focus groups and interviews, analysis, writing up and dissemination) Research findings discussed and refined with Emergence

15. Project Design & Methodology Phase 1: Understanding what it means to care Focus groups with carers’ support groups in London (BUK), Colchester (Haven) and Oxford (OFAFE) One-to-one interviews with carers of people with PD who use SUN project at SWL&StG Trust (& not receiving support) Data recorded and transcribed verbatim Data analysed and organised into themes to provide: Understanding of what it means to care List of carer priorities for support for caring

16. Project Design & Methodology Phase 2: Informing the National Carers’ Strategy for Personality Disorder Follow-up focus groups with London, Colchester and Oxford to clarify and prioritise themes for inclusion in National Carers’ Strategy, Focus group members ranked each theme in order of importance, (Nominal Group Technique used) Phase 1 one-to-one interviewees given opportunity to rank themes Members of BUK’s online carers’ forum given opportunity to rank themes and provide further qualitative data

17. Findings

18. Qualitative data to support themes Knowledge and training for professionals: “And there’s me tearing my hair out thinking I don’t know what is wrong with him. Is it just depression and anxiety? And the GP’s assured that it’s just depression and anxiety, more recently she said the problem with the label, if it is borderline personality, you can’t change it that’s true professionals , I’ve got to understand it. You know just different ideas from different, non professional, a non professional person is completely at sea trying to think what is wrong with that person.” “and I think you may, and we did run into it with at least one mental health professional who took this line, well you choose to behave like this and sort of pull yourself together and behave yourself, and if it’s a behavioural disorder behave yourself, and that is very unhelpful and quite dangerous actually.”

19. Qualitative data to support themes Crisis Support: “… it would have been nice to know if you were having any sort of difficulties there would have been somebody there you could have rung. You know like when they’ve got their carers and they have a support network over the phone. Because again [she] has been with me when they’ve come round to her house … I thought then when they came just to give her a little bit of support they were quite good with me too, but they weren’t there for me do you see what I mean, so it would be nice if carers could have that sort of set up.” “and of course borderline personality disorder is driven by crisis and the fact that you know, my daughter’s under the local health team now, but they work 9-5 there is an out of hours number you can call, but again you will be fobbed off and there is nothing that gives you that support…..And crisis always happen in the evenings or at weekends, or bank holidays…..Yes and there is nothing and that in my mind is ridiculous in a whole system.”

20. Qualitative data to support themes Knowledge and information for carers: “…as I say she was told she had borderline, but I’d never heard of it…the word personality disorder, I thought to myself it’s just some funny sort of term, and then when I looked it up on the internet I was fairly horrified.“ “I was fighting against her and probably making the situation inflaming it and a lot worse. Because until you get information, knowledge and information is everything in this situation because if you’re ignorant to what they’re suffering from how can you… well it’s like throwing petrol on the flames, well I did, made it a whole lot worse, not intentionally.”

21. Aims and Objectives Develop, from the service user perspective, an understanding of recovery in relation to personality disorder Compare and contrast this understanding with similar research undertaken within the dual diagnosis, forensic mental health and eating disorders fields, eliciting common and distinctive themes Explore the acceptability, feasibility and relevance of such qualitative interviews in these groups of people Develop applications for further study that are aimed specifically at supporting people with PD in their individual recovery Service users, academics and clinicians working together as researchers

22. Service user involvement Service user researchers at St George’s involved in developing proposal and drawing up of original interview schedule across all four domains Service user and carer researchers involved in all aspects of research (design of interview schedule, focus groups and interviews, analysis, writing up and dissemination) Service user researcher and doctor undertook all interviews jointly: particular attention paid to the impact of this collaborative working on the research process and findings Reflective diaries kept by all members of research team throughout project in order to explore the impact of service user involvement and collaborative research

23. Project Design & Methodology Six in-depth narrative interviews undertaken jointly by SUR and doctor with people belonging to the Service User Network (SUN) project: a PD service for people living in the community First part of interview invites people to describe what ‘recovery’ means to them in the context of their experiences of PD Second part of interview asks them to reflect on the relevance of other accounts of mental health recovery to them Interviews digitally recorded and transcribed verbatim Combination of narrative analysis (keeping individual recovery stories intact) and content analysis (comparing understandings of recovery and PD with other understandings of mental health recovery) – still in progress!