1. The Working Together Relationship Dr Katherine Froggatt Senior Lecturer International Observatory on End of Life Care Lancaster University, UK

2. 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

3. Working together in research ConsentingConsultingCo-operativeCollaborativeCollective action Involvement TokenFor usersFor and with users With and by users Led by users User role RepresentationTasks 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 Tripp (1998 ) Users in control

4. 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

5. 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

6. 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.

7. 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

8. 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)

9. 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

10. 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

11. Process of portfolio development Examination of end of life issues Identify information and resources Review resources Develop portfolio Use the portfolio Revise Share portfolio with others Revise

12. 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

14. 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

15. 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

16. 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

17. 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

18. Making sense of how we worked together Continuum of involvement Quality criteria for approach chosen

19. ConsentingConsultingCo-operativeCollaborativeCollective action Peer educators x√√√x Workshop participants √√xxx Continuum of involvement

20. 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

21. Quality IndicatorAs applied in the study Worthwhile practical purposes - Yes Ageing and dying are universal human experiences. Present in national and local health policy Present as an issue in people’s lives Democracy and participation - Yes Project designed and undertaken together Project group meetings ensured shared responsibility for the project Workshops increased participation to wider population Different ways of knowing present - Yes 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 Responsive and developmental - Yes Builds upon previous research Ongoing review through monthly meetings Peer educators developed skills and knowledge Workshop participants requested further sessions Further series of community education sessions Froggatt et al,(in press)

22. 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

23. 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.