Coconstructing a grounded theory: mapping the early experience of people living with Alzheimers dise

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Co-constructing a grounded theory mapping the
early experience of people living with
Alzheimers disease using CCI A case Example
Dr Sion Williams University of Wales,
Bangor hss042_at_bangor.ac.uk
Professor John Keady University of
Manchester john.keady_at_manchester.ac.uk
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Presentation

• Based on presentation at the INSCOA Conference
  2006, Västerås,
• Builds on previous presentations in 2005
• Williams, S. and Keady, J. Co-constructing the
  early experience of dementia using the CCI
  approach. Alzheimer Europe 15th Alzheimers
  Europe Conference, Killarney, Ireland.
• Williams, S. and Keady, J. Catching the fish in
  the stream chronicity and the generation of
  shared knowledge using Co-constructed Inquiry.
  Representations, Aesthetics, Contexts. Narrative
  and memory Research group, 5th Annual conference.
  University of Huddersfield.
• Keady, J. and Williams, S. Co-constructed
  Inquiry a new approach to the generation of
  shared knowledge in chronic illness. The 2005
  International Nursing Research Conference, Royal
  College of Nursing, Belfast.
• Co-constructing the experience of dementia (UK)
  John Keady, Sion Williams, John Hughes-Roberts
  in User Participation Research
  in Health and Social Care Nolan, M. et al (2007),
  OU Press.

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Acknowledgement

• John Hughes Roberts
• Nurse Specialist,
• Division of Mental Health Learning Disability,
• Conwy Denbighshire NHS Trust,
• Glan Traeth Day Hospital,
• Rhyl

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BasicsAlzheimer Disease

• There has been an increased understanding of the
  aetiology, course and diagnostic categories of
  dementia, and models of understanding during the
  past 20 years
• The social model of dementia seeks to understand
  the emotions and behaviours of the person with
  dementia and by learning about each person with
  dementia as an individual, with their own unique
  history and background (Fares, 1997)
• Alzhiemers disease (AD) is the most common cause
  of dementia in old age and also occurs in those
  under 65.
• It was first described in 1907 by Alois Alzheimer
  (Alzheimer 1907) He described the case of a woman
  who died aged 51 years with the symptoms of
  dementia.

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Alzheimer Disease (AD)

• However it is now recognised that AD does occur
  in both older and younger people (Gao et al
  1998), and AD accounts for approximatley 60 of
  all dementias (Henderson, 1994)
• The rate of progression is variable. On average
  the person with AD performance on cognitive
  testing will deteriorate by about 10 per year
  and life expectancy from onset of symtoms varies
  from two to twenty years with an average of about
  ten years (McKeith Fairburn, 2001).

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Adjustment and coping

• Current models of coping methods may not reflect
  the insider experiences of people with AD
  disease and their families
• Such models tend to be dominated by the stress
  paradigm (Nolan et al, 2003).

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Telling stories

• Each of us has a life story in which illness
  will certainly play a part. But illness will
  never be the whole story. For each of us the
  choice is to live our lives well, the challenge
  is just how to do that in the face of dementia
• (Cayton, 2004)

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Why Us? Why CCI?

• We are both nurses who have experience as
  researchers, practitioners and lecturers in
  working with people who have long term
  conditions, e.g. stroke, Parkinsons disease,
  Alzheimers
• Dissatisfaction with a research process that
  grants the researcher control over the data
  collection and analysis
• Need to integrate the expertise of those who live
  with a long-term condition into the research
  process
• Existing methods not fully resonant with this aim.

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What Does CCI Seek to Achieve?

• Engaging people living with a long-term condition
  to use their expertise to guide, shape and
  represent their own construction(s) of the
  illness experience
• A more egalitarian and blurred relationship
  between researcher and the researched
• Practitioner at the heart of enterprise and focus
  on a relationship between practitioners as
  practitioner-researchers (Reed and Procter, 1995)
  and people with long-term conditions
• CCI attempts to enable people living with
  Alzheimers to narrate and theorise using their
  words.

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CCI conceptual underpinnings

• CCI is grounded in the precepts of
• Glaser and Strauss (1967)
• Glaser (1978)
• Guba and Lincoln (1989)
• Somers (1994)
• Charmaz (2000)
• CCI elaborates upon Charmazs (2000) thesis
  regarding constructivist grounded theory
• CCI mainly uses theatrical terms e.g. script,
  performance, acts, scenes, props and players to
  help give meaning to its basic ideas.

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Modifying Constructivist Grounded theory

• Historically, grounded theory has been judged as
  silently authored, that is, researchers have
  maintained a positioned of distant expert
  (Charmaz, 2000)
• It is argued by Charmaz (2000) that CGT can help
  the researcher further their knowledge of
  subjective experience
• CGT assumes that people create and maintain
  meaningful worlds
• These worlds are created and maintained through a
  dialectical process of sense making and
  constructing meanings out of their realities
  (Charmaz, 2000).

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Modifying Constructivist Grounded theory (2)

• The researchers requires sustained involvement
  with the research participant one-shot
  interviewing leads to a partial, sanitized view
  of experience, cleaned up for public discourse
• The constructivist design of Charmaz (2000),
  moves away from the use of diagrams or conceptual
  maps as well as advocating the use of less
  complex terminology and jargonistic terms
  (Charmaz 2003 pp 276),
• Using simple language and straightforward ideas
  that make the theory readable (Charmaz 2000,
  p527).

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A new approachCo-Constructed Inquiry

• It attempts to search for what Charmaz (2000)
  describes as the mutual creation of knowledge by
  the viewer and viewed (p.510) in grounded theory
  work.
• Co-constructed Inquiry (CCI) attempts to address
  the challenges posed by Charmaz (2000) as part of
  Constructivist Grounded Theory.
• It utilises a dramaturgical metaphor and consists
  of three acts, to advance accessibility
• It retains diagramming and conceptual mapping
  as these facilitate straightforward ideas based
  on empirical work with people living with stroke,
  Parkinsons disease and AD.

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CCI Eight Embodied Principles

• Process criteria
• Relationship requires prolonged and
  sustained engagement
• Trust requires the creation of a shared
  and mutually respectful relationship
• Self awareness based on biographical work
  focused on diachronic- synchronic
  narratives
• Expert facilitation clinical expertise and
  theoretical sensitivity (Glaser, 1978).

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CCI Eight Embodied Principles

• Neutrality a safe place to engage in CCI for
  both/all parties, creating opportunities
  for joint work, in/out of practice
• Equity equal access to research process and
  tools for both/all parties in order to
  co- construct
• Ethical
• Safeguards practitioner-research requires
  in/out of practice activity and
  understanding vulnerable groups
• Supervision preparation, support, mentoring and
  Directing.

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CCI and Alzheimers Disease

• The paper focuses on a CCI study that develops
  constructivist grounded theory by people with
  Alzheimer disease (AD).
• Case example is Lindas theory.
• This grounded theory arises from the enactment of
  the key CCI criteria
• longitudinal design,
• using constructivist principles,
• specialist practitioner involvement,
• life story work (life script in CCI)
• establish a more egalitarian relationship between
  supervisors, researcher and participants.

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CCI involves performance of three acts
Personal Theory
Life Story Script
Collective Theory
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Grounding grounded theory

• This presentation will focus on the development,
  composition, ownership and utility of the
  Personal Theory of people with AD.
• A process that began soon after diagnosis for
  study participants (n7) and has taken over 18
  months to complete involving a number of acts and
  scenes.

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Act 1Life Story Script Scenes 1-4
Life Story Script
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CCI Generating a Life Story Script And
Biographical Sensitivity
Backstage Narrative
Backstage Narrative
Practitioner Researcher Life Story
Guided Autobiography
Person with Long-term condition Life Story
Points of connection
Trust, Awareness, Sharing
Trust, Awareness, Sharing
The Life Story Script
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Biographical sensitivity

• Exchanging stories between person with AD and
  practitioner-researcher goes beyond the
  front-stage story of illness and practice.
• Developing Points of connection facilitates
  relationship and trust.
• Life Story Script integrates back and front
  stage narrative.

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Exchanging stories and recognising points of
connection

• The initial fear of losing control soon passes
  and as the interview develops the experience can
  become quite enjoyable, therapeutic even
• Nurses are used to asking the questions and
  listening to people. To have someone, who is
  interested in you and prepared to listen to your
  story, can be a rewarding experience (JHR,
  Memo).

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Act 2Personal Theory Scenes 1-5
Personal Theory
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Personal Theory Act 2

• Scene 1 Reading Through the Script
• - Generating the Performance involves the
  co-researchers looking at the Script (LSS) to
  produce the persons storyline
• - Reading Through the Script involves Rehearsing
  the storyline by moving back and forth through
  Life Story Script
• Moving back and forth involves Negotiating the
  content of the Script as a prelude to drawing out
  current life experiences
• Scene 2 Walking Through the Script
• Finding Props involves seeking out key words,
  phrases, life maps and diagrams as a platform for
  co-construction
• Working with the Props of words, phrases and
  diagrams requires shared ideas books and tape
  recorder
• Walking Through the Script develops ideas for
  the co-construction of the persons storyline
  (Narrative based-categories)
• Agreeing the co-construction based on moving back
  and forth through the Script and rehearsing
  constructions and understandings
• Seeking Whats centre stage? in the persons
  storyline.

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Act 2

• Scene 3 Finalising the Script
• - Building on the storyline developed in the
  chaptered Life Story Script to identify whats
  centre stage in the storyline (Explanatory
  categories)
• - Rehearsing and agreeing the current storyline
• - Documenting this in words, movement and
  symbolic representation (e.g.via the Props of
  maps, diagrams and phrases)
• - Keeping the language and interpretation(s) of
  the person with the long-term condition centre
  stage at all times
• Scene 4 Signing Off
• - Agreeing the comprehensiveness of the Personal
  Theory
• - Signing off the Personal Theory leads to a
  third act of generating Collective Theory.

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Generating personal Theories whats centre stage?
Talk
Diagramming
Text
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Developing Personal Theory overview
Reading (1) and walking (2) through the Life
Story Script
(3) Connecting and finalising
People with AD and Practitioner-researcher
The Life Story Script
Personal theory
The Storyboard
Time
Research supervisors supporting the cast as
Directors
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Diagramming to develop Personal Theory
connecting (3) the storyboard
Time (temporal)
Movement and a narrative category with
beginning, middle and end
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Diagramming to develop Personal Theory
connecting (3) the storyboard
Phases or stages Derived from chaptered Life
Story Script
Seeking Critical junctures
Ordering the narrative constructions in the
Life Story Script around the present
tense Testing the reconstructions of the
experience
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Example Lindas Storyboard whats centre stage?

• Early Signs
• Forgetting people, arrangements and appointments
  in work
• Making mistakes
• Frustration, anger, panic
• Being together
• Pulling apart/coming together
• Support-memory clinic, Tuesday club

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Developing Lindas Personal Theoryconnecting
the storyboard (3)
Critical juncture
Adapting coping
Early Awareness
Diagnosis
Early Signs Forgetting people, arrangements and
appointments in work
Losing control
Good/bad days blips
Telling people
Normal life in control Separating me from
illness
Being together
Social outlets
Making mistakes
Pulling apart/coming together
Support-memory clinic, Tuesday club
Frustration, anger, panic
Taking each day as it comes
Memory techniques/routine
Time
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Lindas Personal Theoryfleshing out the
storyboard (4)
Early Awareness
Diagnosis
Adjustment
Coping
Life in control
Losing control
Fleshing out 1. What triggered seeking a
diagnosis? 2. How diagnosis made a difference to
control ? 3. Who was involved? Working with
Life Story Script and Storyboard
Telling people
Being together
Early Signs Forgetting people, arrangements and
appointments in work
Social outlets
Pulling apart/coming together
Support-memory clinic, Tuesday club
Making mistakes
Taking each day as it comes
Frustration, anger, panic
Memory techniques/routine
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Linda finalising (4)
Making mistakes
Life in control
Losing control
Making mistakes not being me Being
together Support.
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The importance of diagrammingWhats centre
stage whats centre page?

• Life Story Script and chapter headings.
• Arranging meanings through arrows and boxes.
• Mapping movement on a page.
• Personal theory as a modifiable grounded theory
  narrative.
• The performance goes on.

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Personal Theories

• The heart of the endeavour is simplicity in
  describing ideas and theory that emerges.
• Engaging people living with a long-term condition
  to use their expertise to guide, shape and
  represent their own construction(s) of the
  illness experience
• CCI attempts to enable people living with
  Alzheimers to narrate and theorise using their
  words.

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Act 3Collective Theory Scenes 1-5
Collective Theory
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Collective Theory Act 3

• Scene 1 Reading through each Personal Theory
• - Directing role (supervision) with
  practitioner-researcher to explore each Personal
  Theory
• - Read through all the Personal Theory generated
  by co-researchers
• Scene 2 Walking through the Personal Theory
• - Supervisor/s and Practitioner-researchers
  explore the all the Personal storylines
• - Explore the development of LSS, storylines and
  Personal Theory over the duration of
  relationship
• - Identify inter-case explanatory categories.

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Generating the ProductionAct 3

• Scene 3 Connecting
• - Connect the inter-case explanatory categories
  to generate a collective storyline
• Scene 4 Finalising the Collective Theory
• - Exploration of the inter-case explanatory
  categories to generate a collective storyline
• - Test, adapt and re-test Collective storyline
  with original co-researchers
• Develop a collective theory based on the analysis
  (CCA)
• Scene 5 Signing Off
• Present the completed Collective Theory as the
  final CCI product
• Different endings possible.

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Further Development

• Personal theories to collective theories
• Moving forward CCI
• Moving forward Constructivist Grounded Theory
• Case Exemplars Parkinsons disease and stroke

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Co-constructions matches struck unexpectedly in
the dark
What is the meaning of life? A simple question
one that tended to close in on one with years.
The great revelation had never come. The great
revelation perhaps never did come. Instead there
were little daily miracles, illuminations,
matches struck unexpectedly in the
dark Virginia Woolf
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