Involving consumers with palliative care needs and their families in research : A case study

Background: There are significant policy imperatives to involve consumers at the outset of and throughout research. How best to achieve this in an authentic and meaningful way is elusive, particularly within the palliative care population. Aim: To determine how best to engage people with palliative care needs and their families in co-designing a qualitative study to better understand how to improve care of the dying in the acute care setting. Methods: A case study design informed this work, informed by pre-determined research questions that focused on consumers advising on participant experience within the research, rather than research methodology per se. Findings: Eleven consumers contributed across five panel meetings. Analysis of documented feedback led to four key areas of protocol change: Getting the language in the recruitment materials and information and consent forms right; Developing a feasible and acceptable recruitment strategy; Opportunities to more clearly articulate the explicit value of this research for patients and families; Support strategies for participants. Discussion: Authentic consumer engagement requires time and effort; however, the outcomes are well worth the invested time and energy. Key foci outlined within this case study to enhance authenticity included: collaboration; preferencing the consumer voice; adequate preparation to support consumer engagement; and openness to all feedback provided. Conclusion: Co-designing research with consumers enabled the outcome to be feasible for implementation, without any modifications required. Ensuring relevance and consumer-centredness for the expanding palliative care evidence base is essential and can only be achieved through meaningful partnerships with consumer representatives.