Public involvement in palliative care research: a qualitative evidence synthesis and case study approach

Introduction
Although public involvement has grown in prominence, there is a lack of evidence on involvement in palliative care research compared to elsewhere in health and social care. Considering the ageing population, the need for palliative care service provision and research will grow, increasing the significance of involvement in this area.
This study aimed to explore involvement in palliative care research by identifying facilitators and barriers for involvement, and gaps in the evidence base. Furthermore, to explore the effectiveness of involvement in palliative care research and how prominent issues have been addressed.
Methods
A multi-methods design was used. A qualitative evidence synthesis was undertaken. Subsequently, a case study approach focussed on two palliative care research centres, as exemplars of involvement. Qualitative methods were used, including documentary analysis and interviews with public members and staff.
Reflexivity and an emphasis on involvement throughout the study, by working with a Patient and Carer Reference Group, improved both the quality and comprehensiveness.
Findings
Although some believe involvement in this field to be complex and challenging, many similarities to involvement elsewhere were found. These include values and principles, diversity and inclusion, and the need for adequate resources, particularly for organisational level involvement. Other factors highlighted differences in involvement, largely due to palliative care bringing emotive and sensitive issues, resulting in increased staff, time and funding all being required. Power was also significant, notably the exclusion of public members with experience of palliative care cannot be justified because of their perceived vulnerability.
Discussion
This study has identified factors common to all areas of involvement, including a need to develop and resource infrastructure to support both research studies and organisational level involvement, and the development of a positive culture. Factors specific to palliative care research include the need for additional resources for involvement to be undertaken effectively.