Enablers to successful patient and public involvement in Palliative Care Research: Qualitative perspectives of public members and Program Coordinators

Abstract

Background:

Despite policy and health service imperatives for public involvement to be embedded within palliative care research, this practice is not commonplace. Few empirical studies have sought to explore and evaluate models of public involvement for palliative care.

Aim:

To explore experiences of public involvement within palliative care, and to identify enablers for successful models of involvement.

Design:

An exploratory qualitative design was utilized. Semi-structured interviews were conducted via zoom or telephone, and interview transcripts were subjected to inductive thematic analysis.

Setting/participants:

Purposive sampling of 23 participants with experience of public involvement in palliative care or related areas, across different health institutions in Australia and the United Kingdom, including public members and public involvement program coordinators.

Results:

Twelve public members and 11 program coordinators described their experience with public involvement in a palliative or related healthcare setting. Three themes emerged relating to successful involvement (1) Relationship building and maintenance: opportunities to enhance team familiarity, early involvement, consistent point of contact, and inclusion of more than one public member. (2) Clarity around goals of involvement: flexible roles and processes, ongoing communication, formal recognition of public input. (3) Training and support: mentoring opportunities, upskilling for public members and researchers. These enablers promoted a collegial atmosphere that enhanced personal and collective experiences of public involvement.

Conclusions:

This study reveals enablers that potentially shape the extent and effectiveness of public involvement in palliative care. Integrating these enablers has implications for future models of public involvement in palliative care and potential for enhanced research outcomes.

Keywords

palliative care public involvement consumer involvement qualitative research

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