Working together to help everyone affected by severe mental illness recover a better quality of life Using personal experiences to understand other people’s mental health recovery Terry Bowyer, John Larsen and Roger Smith representing the Rethink Recovery Narratives Project Team British Sociological Association Sociology of Mental Health Study Group/Survivor Researcher Network Seminar Series, 1 June 2009, British Library, London

The Project Team L-R: Julie Billsborough, Alice Hicks, Peter Mailey, Ruth Sayers, Terry Bowyer, Pippa Brown, Roger Smith, John Larsen, Sarah Ajayi, (Front) Alison Faulkner Project funded by: AstraZeneca 2

Aims of presentation  Discuss the use of personal experiences in research on mental health recovery  Describe a model for inclusion of researchers’ personal experiences in project design, analysis and write-up  Present overview of key findings and suggest how a reflexive research approach may contribute to knowledge on mental health recovery  Invite debate on value of our methodology and findings 3

4 Methodology  Design  Participatory approach to support people with lived experiences conducting the study  Exploratory to examine narratives of recovery  Reflexive-interpretive approach to data collection and analysis  Data collection  Semi-structured individual interviews  Reflexive notes by researchers to inform analysis  Participant demographic and evaluative information

Reflexive approach  Researchers used their personal experiences actively:  in asking questions of and understanding participants during interview  when analysing data transcripts and drawing on personal reflexive notes  As a team the seven Involvement Researchers agreed themes through discussions, challenging each others’ perspectives and deepening the analysis 5

6 Research preparation  Recruitment of the team of seven Involvement Researchers  Introduction to project and training in research methods provided by experienced service user researcher  Team involved in construction of interview guide – drawing on personal experiences and understanding of recovery

Involvement Researchers with lived experiences  11 to 31 years since first episode mental illness  Experience of a range of diagnosed and undiagnosed mental health problems: Addiction, Anxiety, Borderline Personality Disorder, Bipolar, Depression, Euthymic Depression, Schizo-affective disorder, Schizophrenia, Self harm 7

Data collection  Participants with lived experience of mental illness and recovery self selected in response to advert  48 interviews throughout England – 7 regions  Involvement Researchers – first interview in pairs for support and mutual learning.  Interviews were at local Rethink sites, with support worker available for support  Following each interview Involvement Researchers identified key points and wrote reflexive notes linking to personal experiences 8

Participant profile (1) 9 Gender Age range (yrs) Ethnicity Female 26 Male = = = = = = 3 African (Gujarati Kenyan) 1 Asian 2 Black British Caribbean 1 White British 41 White British (Jewish) 1 White Other (European) 1 White Other… (Anglo Irish) 1 48 participants interviewed

Participant profile (2) 10 Note: Participants may indicate multiple diagnoses

Data analysis  Audio-recorded interviews transcribed verbatim  Each Involvement Researcher sent own interviews for thematic analysis – drawing on reflexive insights  Themes agreed through team discussion  Key data passages identified for themes by Involvement Researchers  Themes written up through collaborative team approach 11

12 Findings Drivers Acceptance Locus of power and control Dependence/ independence/ interdependence Individual / internal themes Taking responsibility Self-management and resilience Having purpose/contributing/belonging Identity/self-awareness Spirituality and cultural wisdom Contextual / external themes Treatments Receiving support Relationships Stigma and Isolation Basic / Material needs

Drivers of recovery  In our data three aspects of recovery stood out as having a particular importance and cross-cut the ten analytic themes.  The recovery drivers represent qualities in relationships between people or the person’s engagement with the issues that shape the direction of mental health recovery. 1. Acceptance 2. Locus of power and control 3. Dependence/ independence/ interdependence 13

Acceptance  Being accepted rather than rejected by others helped people come to terms with what had happened  Importance of accepting own situation or illness, and the consequences of that in changing lifestyle, attitude and expectations 14

Locus of power and control This is about whether people feel that they direct their own recovery  Losing power and control  Becoming ill often equates to losing control of one’s whole life  Mental health professionals are often felt to have all the power and control of making decisions about treatment  People can feel controlled by their medication, and feel a loss of their own power and sense of self  Gaining power and control  Developing relationships (also with family and friends) where power and control are felt to be in balance are helpful steps towards recovery  Having a purpose and being able to give back are important ways to feel empowered and valuable 15

Dependence/ independence/ interdependence  When ill, people often find themselves in a position of enforced dependency  Some feel stuck in a dependent role and may find it threatening to move out of this  Others feel a great urge to become independent, but may not recognise the importance of interdependent relationship-building or find it very challenging – and become isolated as a result  Recovery involves finding a balance of the three states: dependence, independence and interdependence 16

Reflexive and co-constructed approach:  Apparent contradictions and differences in data have found analytic meaning at a higher level of analysis grounded in lived experience (the drivers)  Visibility of how individual situations and preferences present challenges and opportunities – and impact on people’s road to recovery 17 What’s new?

For discussion 1.Does our approach add to existing knowledge? 2.Are findings and analysis more truly grounded in personal experiences? 3.Can our methodology be improved? 4.Research being participative and empowering – a value in itself? 18