Using personal experiences to understand other people

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Using personal experiences to understand other
peoplesmental 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)
48 participants interviewed
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Participant profile (2)

• 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
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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 persons
  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 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
  ones 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
Whats new?

• 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 peoples road to recovery

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For discussion

• Does our approach add to existing knowledge?
• Are findings and analysis more truly grounded in
  personal experiences?
• Can our methodology be improved?
• Research being participative and empowering a
  value in itself?