Transcript Add Title - NHS R&D North West

The Working Together Relationship
Dr Katherine Froggatt
Senior Lecturer
International Observatory on End of Life Care
Lancaster University, UK
Structure
• Background
– Working together in health research
• Case study of an end of life peer education
research project
• Review
– Understanding how we worked together
– Implications
Working together in research
Tripp (1998)
Consenting
Consulting
Co-operative
Collaborative
Collective
action
Involvement
Token
For users
For and
with users
With and by
users
Led by users
User role
Representation
Tasks
assigned
Opinions
considered
Sharing
knowledge
Users’ agenda
Researcher
role
Researchers
cede no roles
Directs
research
Decides
about
research
Facilitates
research
May be
absent
Researcher in
control
Shared control
Users in
control
Case study
Improving public awareness of end
of life issues among older people in
North Lancashire:
A peer education approach
Funded by North Lancashire PCT
Acknowledgements
• Lancaster Peer Education Team: Gail Capstick, Oliver
Coles, Deirdre Jacks, Susan Lockett, Irene McGill, Jill
Robinson, Janet Ross-Mills
• Mary Matthiesen, Conversations for Life
• Jane Seymour, University of Nottingham
Aims and Objectives
Aim:
• To pilot a locally appropriate peer education programme
on end of life issues for older adults
Objectives
• To design a personal portfolio to hold individually tailored
end of life resources and information;
• To undertake public end of life workshops for older
members of the general public and their advocates;
• To identify future partnerships for ongoing end of life
public awareness work.
Participatory Action Research
• Key principles
– Working with
– Incorporating different ways of knowing
• People’s experiences
• Practical impact
– Bringing about a change
• Using cycles of action and review
Participation with older people
• Integral to study
– Designed and undertaken by Lancaster Peer
Education for End of Life Care group
– Comprises members of general public, retired
and/or active in working with older adults about
issues of learning, plus researcher (KF)
Methods
• Strand 1: Development of personal end of life
information and resources portfolio
• Monthly meetings – September 2009 to March
2010 (prior and ongoing)
– Record of meetings - notes
– Personal reflections
Strand 2: Development of a community
workshop on end of life issues
• Two workshops
– Older adults
– Advocates (health and social care professionals
and volunteers from public and voluntary sector)
• Preparation facilitated by external adviser Mary
Mattheisen from Conversations for Life
Process of portfolio development
Examination of
end of life issues
Identify information
and resources
Revise
Share portfolio with
others
Review
resources
Develop
portfolio
Revise
Use the
portfolio
Looking to the Future portfolio
•
•
•
•
•
•
•
•
•
•
•
•
Introduction to the Portfolio
Who am I?
Personal Details
Life Contacts
Health Information
Important Documents
How I want to be cared for now and in the future
Anticipating Future Changes
After I Die
Further Information
Resources
Background
Workshop Content
Three sections
• What are some things
to think about?
• How to begin planning
• How to talk about
these issues
Structure
• Personal stories
• Facilitated table
discussions
• Feedback and wrap
up
Workshops
Attended by 35 participants
Workshop 1 – 21 older participants
– 18 women; 3 men
• Age
– All participants were over 55 years old,
– 17 (85%) over 65 years old
– 7 (35%) over 75 years old
Workshop 2 – 14 professional and advocate participants
• 11 women; 3 men
• (1 older women)
• Hospital, hospice, care home and voluntary sector
backgrounds
• Nurses, doctors, social workers
Workshop Evaluation
• Recognition of:
– Shared concerns re future planning
– Importance of doing this work and timing for this
– Need to find practical ways to plan and talk to others
• Portfolio - overall positively reviewed
– Clear and comprehensive; identified as useful
– But
•
•
•
•
How to ensure someone knows about it
How to keep information safe
How to access to resources for people without web access
For some too much to address at once
In summary
• Met our aims and objectives
– Piloted a local peer education initiative
– Designed a personal portfolio
– Undertaken public end of life workshops
– Identified future partnerships and further work
Making sense of how we worked
together
•Continuum of involvement
•Quality criteria for approach chosen
Continuum of involvement
Consenting
Consulting
Co-operative
Collaborative
Collective
action
Peer
educators
x
√
√
√
x
Workshop
participants
√
√
x
x
x
Quality criteria for action
research (Reason 2007)
• The extent to which worthwhile practical
purposes are addressed
• Levels of democracy and participation
• The different ways of knowing engaged with
during the study
• The extent to which the research has been
and continues to be responsive and
developmental
Quality Indicator
Worthwhile
practical purposes Yes
Democracy and
participation - Yes
As applied in the study
• Ageing and dying are universal human experiences.
• Present in national and local health policy
• Present as an issue in people’s lives
• Project designed and undertaken together
• Project group meetings ensured shared responsibility for
the project
• Workshops increased participation to wider population
• Experiential knowing - used personal experiences
• Presentational knowing - use of stories
• Propositional knowing - review of resources, writing of
report, publications and presentations
• Practical knowing – running workshops/writing portfolio
• Builds upon previous research
Responsive and
developmental - Yes • Ongoing review through monthly meetings
• Peer educators developed skills and knowledge
• Workshop participants requested further sessions
• Further series of community education sessions
Different ways of
knowing present Yes
Froggatt et al,(in press)
In conclusion
• Participatory action research offers one way to work
together within research
• In end of life peer education project we worked
together: engagement and participation present for
individuals and groups.
• This facilitated development of:
– peer group of educators
– new knowledge and change
– local spaces (events) for this to happen
References
• Froggatt K with Capstick C, Coles O, Jacks D, Lockett S, McGill I, Robinson J,
Ross-Mills J, Matthiesen M. Addressing End of Life Issues through Peer
Education and Action Research. In Stern T, Rauch F, Schuster A Townsend
A. Action Research, Innovation and Change: International and
Interdisciplinary Perspectives. Routledge, London. (In Press)
• Reason, P. (2007) Choice and quality in action research. Journal of
Management Inquiry 15(2), 187-203.
• Tripp, D. Critical incidents in action inquiry. In: Shaklock G, & Smyth J. eds
Being reflexive in critical educational and social research. London, Falmer
Press 1998.: 36-49.