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

Abstract

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 predetermined 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.

Hospital patients’ perspectives on what is essential to enable optimal palliative care: A qualitative study

“…The recruitment process was co-designed with consumer representatives (n = 11) within five panel meetings held over an 18-month period. 38 These panel meetings focused on co-designing optimal strategies for identifying, approaching and recruiting people with palliative Implications for practice, theory or policy? Synthesising identified care priorities into a series of key practice points will enable clinicians and managers to implement care in line with what matters most to people with palliative care needs in the hospital setting; • • Translating identified care priorities into a series of feasible and actionable strategies is critical to inform policy reforms at local, regional and national levels. care needs, and their families, and supporting their participation throughout the proposed research.…”

Preferences of patients with palliative care needs and their families for engagement with service improvement work within the hospital setting: A qualitative study

“…Details of this co-design work are detailed elsewhere. 14 The eligibility criteria for this study reflects this advice (Textbox 1).…”

“…Study strength’s include the engagement of consumers in co-designing the research protocol, 14 defining the sampling approach, interviewing and data analysis. Co-design enabled broad and representative sampling with similar numbers of people with advanced malignant and non-malignant illness participating.…”

Co-designing Community Out-of-hours Palliative Care Services: A systematic literature search and review

“…16 To date, there have been very few studies that have reported end-users directing their palliative care needs and priorities as a part of service planning. 14,[21][22][23][24][25][26]…”

“…Patients, families and carers input can assist service providers to prioritise what services are needed and how they should be provided to achieve the best outcomes. 14 , 15 Applying an approach to service planning that values end-user input, can enable the needs of different population groups to be better understood and optimise patient-centric, holistic, and a stronger relational approach to care. 16 – 19 …”