Participatory Research in Palliative Care: Actions and Reflections

About this book

• he first book on action research published solely for a palliative care audience
• Provides an overview of some of the theoretical frameworks of action research
• Written by international, multi-disciplinary authors who explore a collaborative approach to embark on research

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.

Readership: Suitable for health and social care professionals caring for people and their families at the end of life, as well as 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.

Table of contents

Meredith Minkler: Foreword
List of Contributors
Introduction: Jo Hockley, Katherine Froggatt, and Katharina Heimerl: Setting the scene

Section 1: Groundings
1: Jo Hockley, Katherine Froggatt, and Katharina Heimerl: Action research: an overview
2: Jo Hockley: Critical theory and participatory research
3: Katharina Heimerl and Klaus Wegleitner: Organisation and health system change through participatory research
4: Mary Lou Kelley and Margaret McKee: Community capacity development in participatory action research
5: Geralyn Hynes: First, second, and third person inquiry
6: Caroline Nicholson and Julie Barnes: Appreciative inquiry

Section 2: Exemplars
7: Steffen Eychmüller and Franzisca Domeisen Benedetti: Community palliative care in Switzerland: from assessment to action
8: Sue Read: Addressing bereavement support involving people with intellectual disability in England
9: Patricia White and Marie Lynch: Palliative interventions and acute respiratory care in Ireland
10: Sharon Kaasaleinen: Improving pain management in Canadian long term care homes

Section 3: Issues
11: Sharon Andrews, Fran McInery, and Andrew Robinson: Power relations: enhancing the delivery of a palliative approach in an aged care setting
12: Kevin Brazil: Issues of diversity: participatory action research with indigenous peoples
13: Elisabeth Reitinger and Erich Lehner: Gender perspectives in Austrian participatory research in palliative care for older people
14: Katherine Froggatt: Demonstrating quality and rigour in action research: peer education on end of life issues
15: Geralyn Hynes: Addressing sustainability: a hospital-based action research study
16: Katherine Froggatt, Jo Hockley, and Katharina Heimerl: Challenges for collaboration

Index