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

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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

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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

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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

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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

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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

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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

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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

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Participant profile (1)

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Gender Age range (yrs)

Ethnicity

Female 26

Male 22

18-24 = 3

25-34 = 6

35-44 = 11

45-54 = 16

55-64 = 9

65-74 = 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

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Participant profile (2)

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Note: Participants may indicate multiple diagnoses

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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

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Findings

Drivers

Acceptance

Locus of power and control

Dependence/ independence/ interdependence

Individual / internal

themesTaking 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

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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

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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

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Locus of power and controlThis 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

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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

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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

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What’s new?

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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?

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