OPAN Seminar Series

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OPAN Seminar Series

• Older people and Ageing Research Development
  Network
• Professor Mike Nolan
• Creating partnerships between researchers,
  practitioners and older people
• 6th Dec, 2006. Swansea University

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EMERGING TRENDS

• Last 20 years seen a shift in rhetoric from
  research- based to evidence-based practice (Rolfe
  1999)
• The mantra of the moment (Jennings and Loan
  2001)
• New language of social policy based on
  empowerment, participation and partnerships
• (Bernard and Phillips 2000)
• Policy, practice and research
• Expert patient programme an idea whose time
  has come (Donaldson 2003)
• INVOLVE
• Users/carer active shapers of knowledge and
  subsequent action (Clough 2005)

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WHY IS IT IMPORTANT?

• Knowledge, as much as any resource, determines
  definitions of what is considered important, as
  possible, for, and by whom. Through access to
  knowledge and participation in its production,
  use, and dissemination, actors can affect the
  boundaries, and indeed the conceptualisation of
  the possible
• (Gaventa and Cornwall 2001)
• Knowledge is power (Park 2001)

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USERS AND CARERS ARE(SHOULD BE) ACTORS

• Can they
• have access to knowledge
• participate in its
• - production
• - use
• - dissemination

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CHALLENGING THE STATUS QUO

• Distinct tensions between EBP and other major
  trends, such as patient-centred health care
• (Kitson 2002)
• Incompatible with the rhetoric of participation
• (Humphries 2003)
• Participation is part and parcel of social
  policy, EBP is a practitioner engineered
  movement
• (Humphries 2003)
• Raises fundamental questions of power,
  expertise and evidence (Owen 2005)

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WHO HOLDS THE POWER IN DETERMINING EVIDENCE?

• Calls for more diverse view of evidence
• (Rolfe 1999, Ryecroft-Malone et al 2004)
• All forms come equally to the table (SCIE
  2003)
• Triangle of research, practitioners wisdom and
  service user perspectives (Humphreys et al
  2003)
• Decisions made by those receiving care,
  informed by the tacit and explicit knowledge of
  those providing it, with the context available
  resources
• (Dawes et al 2005)
• In practising EBN a nurse decides whether the
  evidence is relevant for the particular patient
• (Di Censo et al 2004)

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THATS THE RHETORIC BUT?

• In reality the focus of attention and
  investment, politically and thus financially, has
  been on undertaking and generating research
  evidence at the expense of gaining a better
  understanding of other types of evidence
• (Ryecroft-Malone et al 2004)

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WHO HOLDS THE POWER IN DETERMINING RESEARCH?

• Whether the techniques generate psychometric
  measures, ethnographies or grounded theory
  doesnt matter. They are all symbolic of the
  power of researchers to define valid knowledge
• (Elliot 1991)
• We must turn on its head the more traditional
  research paradigms in which the outside
  researcher largely determines the questions
  asked, the tools employed, the intervention
  developed, and the kind of results documented and
  valued
• (Holstein and Minkler 2003)

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IS THIS STILL THE CASE?

• Unintentional biasing of the research question
  or the study of effectiveness to a
  professionals view of the world rather that a
  patients view (Kitson 2002)
• the process of participation has been
  concerned with the extraction of data from
  service users, which are then used for
  professionally defined standards and outcomes
  (Humphries 2003)
• Empirical practice or reflective practice,
  both problematic
• the terms of engagement remain substantially
  defined by academics and professionals
• Must transform the rules by which the game is
  played (Barnes 2002)

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TOWARDS A DIFFERING APPROACH ÄLDRE VÄST SJUHÄRAD

• Aim
• To promote partnerships between older people,
  their carers, and service agencies to improve
  quality of life and quality of care
• Objectives
• - Promote cooperation and partnerships in
  health, social and medical care
• - Shared perspectives between older people,
  their families, professionals, voluntary
  organisations, health and social care
  providers and researchers

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TOWARDS A DIFFERING APPROACH ÄLDRE VÄST
SJUHÄRAD (contd)

• Objectives
• - Opportunities to initiate, participate in, and
  evaluate new research-based interventions
  and service developments
• - Raise awareness and competence and ensure
  future quality of services through involvement
  in programmes of research, development and
  education

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THE WHY AND WHAT OF USER INVOLVEMENT

• Why?
• Listen to older people themselves
• Give older people more choice and control
• (Audit Commission 2004)
• What?
• Lowest Inform - tell people what has already
  been decided
• Consult - ask people before you make up
  your mind
• Participate - work together to
  introduce change
• Delegate - let older people decide for
  themselves
• Highest Devolve - hand over decision-making and
  resources
• (Audit Commission 2004)

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HOW DO WE KNOW IF ITS WORKING?

• Not traditional criteria reliability, validity
• Not even trustworthiness criteria
• What about authenticity criteria?
• Fairness
• Ontological authenticity
• Educative authenticity
• Catalytic authenticity
• Tactical authenticity
• (Guba and Lincoln 1989)

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WHAT DO THEY MEAN?

• Fairness are the views of all stakeholders
  solicited and represented in a balanced and
  even-handed way?
• Ontological authenticity do individuals
  (groups) better understand their own situation?
• Educative authenticity do individuals (groups)
  better understand the situation of others?
• Catalytic authenticity is action stimulated or
  facilitated?
• Tactical authenticity are the means to promote
  action provided?

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OK - BUT

• What about the language?
• Developed mainly for evaluative studies, later
  applied to qualitative studies more generally
• Primarily concerned with interactive processes
• (Rodwell 1998)
• How can they apply to Äldre Väst?

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WHOSE LANGUAGE ARE WE SPEAKING?

• Nolan et al (2003)
• Re-label authenticity criteria
• Equal Access
• Enhance Awareness - self
• - others
• Encourage Action
• Enable Action
• Use as a basis for reflection at several stages
  of the research process

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THE MODEL IN ACTION

• Use of ICT to support family carers
• Enhance autonomy, independence and quality of
  life
• Home based computer, access to Internet and
• multi-media caring programmes, video-phone
• Story of Kirsten, Rolf and Thomas

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BENEFITS TO KIRSTEN

• Information about her condition and treatment
• Empowered her to direct her doctor
• Improved self-confidence and relied less on
  Rolf
• Put in contact with other carers, improved
  social life

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BENEFITS TO ROLF

• Able to get out more
• Able to begin to enjoy hunting again
• Improved quality of life for both

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EFFECTS ON THOMAS

• Changed views on older people and their
  potential
• Originally sceptical about ACTION
• Because they are old old and sickmaybe I
  thought that they didnt want that much they are
  not interested in technology and I thought most
  elderly people were like that so I was amazed
  when I started here

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EFFECTS ON THOMAS

• Empowered him to start a new course
• Changed his view of himself
• Im not only a technician anymore I like to
  work with people. Ive started to revalue what I
  do here, and now I understand that its important

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WORKING WITH FAMILY CARERS

• Give professionals a different understanding
• Use as researchers looking at the
  difficulties, satisfactions and coping patterns
  of carers
• Made an impact in several ways
• - raised their awareness of the caregiving
  situation
• - challenged a number of their existing
  beliefs
• - encouraged a more in-depth understanding

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WHAT DID THEY THINK?

• I have been visiting the homes doing several of
  the interviews. And I have seen things I never
  thought existed in the private home fantastic
  such relatives we have! And how quiet they are
  despite their achievement. Incredible, I think,
  and it has enriched my knowledge

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WHAT DID THEY THINK?

• To see the satisfaction has opened new
  perspectives for me. And I get this through
  these structured questions. Although I have been
  working almost 35 years in old aged care I have
  not been used to hearing so much of the positive
  side, it is mostly the burden, what is difficult,
  what they need help with

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WHAT DID CARERS THINK?

• They thought that someone listened to them.
  They were in focus and not the cared-for person
  original emphasis
• I think the confirmation the carers got through
  this interview is fantastic. That someone at
  last sees the carers

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BEWARE THE DRUNKARDS SEARCH
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• Much research effort continues to be shaped and
  governed by the reward structures and performance
  management systems which prevail in higher
  education in particular the Research Assessment
  Exercise which takes place periodically. It
  remains the case that conventional,
  single-authored books and articles attract more
  recognition than the relatively time-consuming
  and often smaller-scale collaborative
  partnerships which are acknowledged to facilitate
  user-involvement. In principle, it would be
  quite feasible to alter this emphasis, and for
  example to build in specific research assessment
  criteria which recognise and reward partnership
  working between user networks and university
  departments.
• (Owen 2005)

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• A guiding principle of RAE 2008 is that all types
  of research and all forms of research output
  shall be assessed on a fair and equal basis.
  Panels are instructed to adopt assessment
  processes and criteria that enable them to
  recognise and treat on an equal footing
  excellence in research across the spectrum of
  applied, practice-based and basic/strategic
  research, wherever that research is conducted.

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