Participatory Research in Palliative Care Actions and reflections

Participatory research is a relatively new method of researching practice especially within palliative care. It differs from other methodologies in that there is an expectation of action within the research process. The values that underpin participatory research are collaboration, empowerment, and reflection. In the current climate of collaboration and working with people in healthcare, participatory research methods are gaining increasing interest when there is a desire to bring about change. Organisational change is becoming an important focus as we look at ways of not only reducing costs but at the same time improving quality of care.

While palliative care puts the patient and family at the centre, Participatory Research in Palliative Care discusses a new research methodology that puts practitioners at the heart of the research process as collaborators who work together with researchers to resolve problems in practice.

Divided into three sections, it provides theoretical groundings of action research, a greater focus on exemplars from studies within palliative care, and discusses prominent issues when using such a methodology. All three sections are illustrated by an action research study undertaken by the author within a palliative care setting.

Participatory Research in Palliative Care is written by international, multi-disciplinary authors who explore a collaborative approach to embark on research. It will appeal to health and social care professionals, academics undertaking research within palliative care, and the management of organisations where people with end of life care needs are cared for, including long-term care homes.

Foreword, Meredith Minkler
List of Contributors
Introduction. Setting the scene, Jo Hockley, Katherine Froggatt, and Katharina Heimerl
Section 1: Groundings
1. Action research: an overview, Jo Hockley, Katherine Froggatt, and Katharina Heimerl
2. Critical theory and participatory research, Jo Hockley
3. Organisation and health system change through participatory research, Katharina Heimerl and Klaus Wegleitner
4. Community capacity development in participatory action research, Mary Lou Kelley and Margaret McKee
5. First, second, and third person inquiry, Geralyn Hynes
6. Appreciative inquiry, Caroline Nicholson and Julie Barnes
Section 2: Exemplars
7. Community palliative care in Switzerland: from assessment to action, Steffen Eychmuller and Franzisca Domeisen Benedetti
8. Addressing bereavement support involving people with intellectual disability in England, Sue Read
9. Palliative interventions and acute respiratory care in Ireland, Patricia White and Marie Lynch
10. Improving pain management in Canadian long term care homes, Sharon Kaasaleinen
Section 3: Issues
11. Power relations: enhancing the delivery of a palliative approach in an aged care setting, Sharon Andrews, Fran McInery, and Andrew Robinson
12. Issues of diversity: participatory action research with indigenous peoples, Kevin Brazil
13. Gender perspectives in Austrian participatory research in palliative care for older people, Elisabeth Reitinger and Erich Lehner
14. Demonstrating quality and rigour in action research: peer education on end of life issues, Katherine Froggatt
15. Addressing sustainability: a hospital-based action research study, Geralyn Hynes
16. Challenges for collaboration, Katherine Froggatt, Jo Hockley, and Katharina Heimerl
Index