Challenging the politics of EvidenceBased Practice: exploring the testimony of stroke survivors in t

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Challenging the politics of Evidence-Based
Practice exploring the testimony of stroke
survivors in the community. Outline of ideas
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Scope

• The study consists of three elements
• The three elements present the development of an
  innovative archive that integrates different
  sources and record and document complex
  phenomena.
• In essence research question/study underpinned by
  examining
• Stroke survivors as individuals
• Stroke survivors as a group
• The representative nature of stroke survivors
  testimony as a defined group within changing
  social and structural architecture of NHS
  Reforms
• Seeking testimony of
• Stroke survivors and their families
• Documented in literature/policy sources
• Together both provide an archive and commentary
  on NHS Reforms as political (La Politique)
  re-organisation of health care and its
  implications re commentary on the Labour
  Government project (neo-Thatcherite).

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Conceptual frameworks

• It utilises Somers (1994) as an overarching
  framework for seeking to document the
  relationship between the personal, social and
  political, Somers concept of relational
  narrativity enables the political dimension of
  social/health science to be included (Conceptual
  narrativity)
• Personal life experiences of living with stroke
  (Ontological narrativity)
• Personal life experiences of managing life with
  stroke (Ontological -Public narrativity)
• Personal-Public and Political context
• Political context in provision of services and
  NHS Reform programme changes to service provision
  (Master-narrativity)
• Evidence base/political approaches linked to NHS
  Reform programme (Conceptual narrativity).
• It integrates these notions with those of Schutz
  three levels of constructs, documenting testimony
  that describes everyday use of constructs
  related to life with stroke and then also
  examines (systematically) the testimonies in
  the literature.

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The three elements

• The three elements consist of
• Seeking the testimony through a oral history
  approach of stroke survivors and their families
  (i)
• Completing a meta-synthesis of the qualitative
  literature/policy and gaining other testimonies
  through a systematic review (ii)
• Integrating the findings from (i) and (ii) and
  developing an archive (iii).
• Assemble, comment and Archive.

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Outline of methodological and other outcomes

• Development of oral history approach through
  integration of testimony
• Development in the use of testimony (Quattrone,
  2006)
• Integrating innovative health sciences
  (meta-synthesis) approach in providing a range of
  testimonies that contextualises the personal
  and the political as a historical archive
• Development of accessible digital-based archive
  which presents commentary upon significant
  social-political changes using a major chronic
  illness as marker.

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In brief Study aims

• To
• Explore the way stroke survivors and a close
  family member understand the experience of the
  stroke event and its implications on their
  respective biographies.
• Examine the issues that emerge as part of their
  oral history following a stroke through
  interpretation and analysis of a narrative-based
  testimony.
• Explore the nature and impact of health and
  social care services on the life experiences of
  both the stroke survivor and their families.
• Document the life-transitions, ways of coping and
  adapting to their condition narrated in the
  testimony of stroke survivors and their families.
• Develop an archive of the testimony of people
  living with stroke, recording their accounts of
  living with stroke, experiences of professional
  intervention and support following a stroke.
• Conduct a systematic review of the evidence,
  analysing and synthesising the testimony of the
  policy and practice-related literature through
  qualitative meta-synthesis of the literature.

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(i) Oral history accessing the personal and
developing testimony

• Getting into the personal through oral history
  
• Oral history (Roberts, 2002 Plummer Cole
  Knowles)
• Testimony and testimonio, the political act
  and commentary upon social/political change and
  giving voice to those that may not otherwise
  have an opportunity (Beverley, 2000Harris, 2005
  Gregory is small beautiful micro history and
  the history of everyday life
• Testimony (mental health Creswell, 2005) as
  commentary on personal and the political
  (micro/macro)
• Researcher role as interlocutor-recorder and
  archivist
• Metonymic character (Beyond the personal) of
  narrative (Beverley, 2000) - representative
  nature of testimony extends explicitly life
  history produced as linked to social
  context/reality (Gergen and Gergen).
• Role of oral history in documenting health care
  practice and contributing to archival material (
  Russell, 1997).
• Collective memory problems (Kansteiner, 2002)
  mediated by (ii) meta-synthesis element.

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Oral history as testimony (ii)

• The study utilises a oral history approach
  (Roberts, 2002) in order to gain the testimony of
  stroke survivors and their families.
• As human beings we portray ourselves through
  story, and story-making is integral to human
  consciousness (Bruner, 2004). At its most basic
  level, the life/oral history approach is about
  asking for peoples stories, listening and making
  sense of them and establishing how individual
  stories are part of a wider story narrative of
  peoples lives (Bruner, 2004 Roberts, 2002).

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Methods for life history interviews

• In the present study the interviews will
  initially focus on Gubriums (1993) life story
  interview and subsequently ask participants to
  develop life chapters (see Appendix One)
• McCance et al. (2001) highlight that interviews
  are the most frequently chosen method when using
  narrative approaches
• The central aim of any interview is facilitate
  the story to be told and see how respondents make
  sense of their lives (Riessman, 1993) and
  describe their experience and actions
  (Polinghorne, 1995)
• Sequence of life history interviews with
  participants (3-4)
• Cross sectional
• Digital recording/managing.

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Appendix oneThe Life Story InterviewTopics to
Cover

• Life in general
• Everyone has a life story. Tell me about your
  life in about twenty minutes or so if you can.
  Begin wherever you like and include whatever you
  wish.
• What were the most important turning points in
  your life?
• Tell me about the happiest moments in your life.
• What about the saddest points.
• Whove the been the most important in your life?
• Who are you closest to now?
• What does your life look like from where you are
  at now?
• If you had the opportunity to write the story of
  your life, what would the chapters be about?
  (Probe about the last chapter).
• Self
• How would you describe yourself when you were
  younger?
• How would you describe yourself now?
• Have you changed much over the years? How?
• What is your philosophy of life? Overall, what
  is the meaning of life to you?
• Gubrium, Jaber R. (1993). Speaking of Life
  Horizons of Meaning for Nursing Home Residents.
  189-90.

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Reading, interpretation and analysis

• The framework detailed by Lieblich et al. (1998)
  highlights the importance of recognizing
  explicitly the framework guiding the researcher
  and reading, interpreting and analyzing narrative
  using one of four basic strategies.
• In the present study the life history approach
  will be centred on a Holistic-content method
  (Lieblich et al, 1988).
• This involves using the life history as an
  overarching case study drawing on the general
  themes and emerging foci from the narrative.

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Sample and recruits

• Conwy and Denbighshire stroke service population
• Recruits criteria 1-3 year post stroke
• Recruits to include person with stroke and
  family
• Agreement with stroke service obtained in
  principle
• Numbers/sampling matrix (?)

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Research team

• Research team
• Research team to include Prof. D. Tanner, Prof J.
  Noyes Sion Williams
• Research Assistant to complete oral history
  testimony
• Research Assistant to complete meta-synthesis.
• Research training component for RA regarding oral
  history/testimony and synthesis required built in.

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(ii) Meta-synthesis accessing the political

• Analyse and synthesise material using principles
  outlined in Thomas et al (2004) model
• Meta-ethnography and theoretical substruction
  (Frank and Callery)
• Establish criteria etc. focus upon issues
  around/linking
• Modernisation of the NHS
• Evidence based practice
• interdependency, autonomy and agency
• Stroke management and chronic disease management
• Expert patient

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Meta-ethnography

• The qualitative synthesis is structured through
  the techniques of meta-ethnography and provides a
  clear process of distinguishing different orders
  of concepts and the production of middle-range
  theories (Britten et al, 2002).
• This technique is underpinned by developing
  Schutzs notion of
• first order (everyday) constructs,
• second order (social sciences) constructs and
  building intrerpretations from a synthesis
• leading to third order constructs.
• The grid method was developed by Britten et al
  (2002) in order to facilitate conceptual clarity.
  Meta-ethnography provides a series of techniques
  specifically designed to synthesise qualitative
  studies

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Meta-ethnography

• The meta-ethnography approach structures
  qualitative synthesis and analysis as follows
• 1. Reciprocal translational analysis (RTA) this
  requires the key themes, concepts or/and
  metaphors in each study (intra-project) to be
  identified and translated across studies. This
  hermeneutic or meaning-making process establishes
  context and transferability of findings.
• 2. Refutational synthesis (RS) this requires
  the key themes, concepts or/and metaphors in each
  study (intra-project) to be identified and
  contradictions reported and examined for
  explanation. This is a form of negative case
  analysis (Guba and Lincoln, 1989).
• 3. Lines of argument synthesis (LOA) this
  requires an overall interpretation to be built
  around the intra-project work and constantly
  compared as part of the dialectic process in
  order to develop a substantive interpretation

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Substruction and linked to meta-ethnographic
process

• A further phase of parallel and inter-related
  synthesis increases the rigour of
  construct-to-concept movement.
• Theoretical substruction (Franck and Callery,
  2004) enables the delineation of relevant
  outcomes that can be observed and measured
  (Franck and Callery, 2004, page 269).
• The process of substruction is well suited to
  rigorously appraise research that has been
  conducted, addressing possible gaps between
  evidence emerging from research and evidence-base
  knowledge and significantly it critiques
  methodology as well as results (Franck and
  Callery, 2004).
• The process of substruction is demonstrated by
  Franck and Callery (2004) using the diffuse and
  complex concept of family-centred care.

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Pulling it all together
Life history
Meta-synthesis Review
Meta-ethnography
Schutzs notion of first order (everyday)
constructs,
Second order (social sciences) constructs
Substruction
Building interpretations from a synthesis leading
to third order constructs.
Testimony
Testimony
Archive
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(iii) Develop archive

• Generate archive
• Web based links to archive
• Cochrane link to archive (?)
• Other.