The Working Together Relationship

Dr Katherine FroggattSenior Lecturer

International Observatory on End of Life CareLancaster 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

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

Tripp (1998)

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

Review resources

Develop portfolio

Use the portfolio

Revise

Share portfolio with others

Revise

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

WorkshopsAttended 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

Consenting Consulting Co-operative Collaborative Collective action

Peer educators

x √ √ √ x

Workshop participants

√ √ x x x

Continuum of involvement

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 As applied in the studyWorthwhile 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)

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.