Developing an understanding of recovery for people experiencing Personality Disorder living in the community Project team: Kati Turner: Service User Researcher, St George’s, University of London (SGUL) & Chair of Emergence Marion Neffgen:Psychiatry Specialty Trainee, South West London & St George’s Mental Health NHS Trust (SWL&StG) Steve Gillard: Health Services Researcher, SGUL Thanks to: Kath Lovell: Managing Director, Emergence Stephen Miller: Clinical Lead for PD at South West London & St George’s Mental Health NHS Trust (SWL&StG)

Aims To explore understandings of recovery in relation to the experience of Personality Disorder To explore how the different perspectives of service user, clinical and academic researcher inform an integrated understanding of recovery and Personality Disorder

Project Design Six in-depth interviews undertaken jointly by service user researcher and clinical researcher with members of a peer support project for people experiencing PD living in the community Semi-structured interview schedule using open questions to enable interviewees to explore their experiences and understandings of recovery Interviews digitally recorded and transcribed verbatim A three stage analysis process that seeks to capture the different interpretations of members of the research team

Analysis 1: Themes – examples Recovery and society Relationship with external world (K) Social difficulties (M) Kati Normality Integration, Mainstream Contact with others/ socialising, activities Education & employment ‘Playing the game’ Social phobias, workplace Paralysis, alienation, not part of things Dealing with the public, mixing with people Fear and impact of outside world Hiding real self Unsafe place, damaging, harmful Marion Emotions – anxiety, fear, anger, relief Space v contact Effect of other people on emotional state Effect of dealings with bureaucracy Safety, home & protection v outside threats Steve Looking normal - looking after self, fitting in, coping, not getting a bad reaction Talking to someone Activity

Analysis 2: Interpretation of theme ‘Recovery & Society’ Marion’s interpretation Ambivalent feelings about integration into ‘normal society’ Benefits of being able to socialise for recovery Importance of vocational/ educational opportunities for integration into society Perceiving oneself as a failure compared with the ‘normal world’ Importance of and worries about benefits/ finances/ medical examinations Kati’s interpretation Positive effects of integration into/ interacting with society Negative effects of integration into/ interacting with society Feeling separate from ‘normal’ society/ outside world. What is ‘Normality’ for people with PD? Dilemma of how much contact to have with society/outside world Society – its rules and systems such as benefits, welfare and housing issues

Analysis 3: Integrated understanding - ‘Recovery & Society’ Ambivalence – Wish to be part of society v ‘how much interaction can I cope with?’ Positive and negative feelings –‘Recovery is the realisation that perhaps a bit more contact with the outside world or socially in terms of relationships is actually quite a positive sign ’ –‘Recovery? I only feel that I’m feeling better because I don’t have to engage with the world.’ Society’s rules and systems - benefits, housing, work and education and its impact on recovery –‘If you haven’t got your basics in life you haven’t got time to concentrate on your head.’ –‘I am starting college in September. I think college is a big part of the change for me.’ What does ‘normal’ mean & can I be ‘normal’? –‘I work pretty hard at being seen as normal’ –‘When you don’t see a living soul, you don’t know what normal is... you don’t know what normal acceptable behaviour is.’

Reflections Collaborative research process is complex and time consuming Value lies in developing an integrated understanding that is meaningful for service users and clinicians Potential to inform practice and service development

Last thoughts ‘It’s all very well to say you can recover and change my thoughts according to behavioural therapy... but then you only have to start walking outside and you have to be extremely strong to withstand all the cultural messages... It’s hard to remain feeling mentally together.’