Ms Mollie Wilson1,2, Mrs Christine Hofmeyer3, Mr Avi Paluch3, Dr Stacey Panozzo1, Dr Anna Collins1,2, Professor Peter Hudson1,2, Professor Jennifer Philip1,2
1St Vincent’s Hospital Melbourne, Melbourne, Australia, 2The University of Melbourne, Melbourne, Australia, 3Voices for Palliative Care, Melbourne, Australia
Biography:
Mollie Wilson is an early careers researcher and member of the Palliative Nexus research team, working across St Vincent’s Hospital, Peter MacCallum Cancer Centre and The University of Melbourne. Mollie oversees and coordinates a novel community engagement initiative, Voices for Palliative Care (Voices). Voices is a council of public citizens with lived experiences in palliative care, who contribute to research, service development and advocacy in palliative care. Voices was established in response to identified opportunities to increase death literacy in the community and to promote an active partnership with community voices specific to the field of palliative care.
Christine has experienced being a carer for several family members with serious illness (with malignant and non-malignant disease) and palliative care needs, most recently her sister with cancer. Before retiring, Christine worked as a palliative care nurse consultant for 27 years where she was involved in providing palliative care for patients, their caregivers and family. She is informed in service and policy development at a local and national level, including as a consumer representative for Palliative Care Australia. Christine believes it is essential to ensure consumers’ and carers’ views and experiences are heard and integrated into research, policy and service improvements.
Abstract:
Background: There are significant policy and health service imperatives for consumer and community involvement (CCI) in informing palliative care research and service delivery. Although the philosophy of palliative care centres on holistic values and care for patients, family and carers lives, CCI in palliative care research is less advanced than in other areas of health and social care research and there is limited understanding of consumer experience in palliative care research.
Aims: The aim of this study was to explore experiences of CCI participation in informing palliative care research and service delivery, and to identify enablers and methods for successful modes of engagement.
Methods: Consumer representatives partnered with project investigators to ensure that this project includes palliative care consumers as co-designers and co-knowledge translators of project outcomes.
Semi-structured interviews were conducted with twelve consumer experts (community members who have been involved in CCI programs) and ten consumer coordinators (researchers and clinicians who have coordinated CCI programs) in palliative care in Australia and the United Kingdom. Interviews were transcribed and subject to inductive thematic analysis.
Results: The following themes were identified as enablers to successful CCI in palliative care research: relationship building and maintenance between researchers and consumers; clarity around goals of involvement and training and support. These enablers promoted a collaborative atmosphere between researchers and consumers and enhanced personal and collective experiences of CCI participation.
Conclusion/Discussion: This study uncovers a spectrum of enablers that potentially shape the extent and effectiveness of CCI in palliative care. This can result in fostering research that is highly relevant, methodologically robust, and guided by the needs and preferences of the community.