Consumer and carer leadership in palliative care academia and practice: A systematic review with narrative synthesis

Abstract

Background: Contemporary health policies call for consumers to be part of all aspects of service planning, implementation, delivery and evaluation. The extent to which consumers are part of the systemic decision-making levels of palliative care appears to vary between and within services and organisations. Aim: The aim of this systematic review is to develop understandings about consumer and carer leadership in palliative care. Design: A systematic, narrative synthesis approach was adopted due to the heterogeneity of included studies. The review was registered on PROSPERO prospectively (PROSPERO 2018 CRD42018111625). Data sources: PubMed, Scopus and PsycINFO were searched for all studies published in English specifically focusing on consumers’ leadership in palliative care organisations and systems. Articles were appraised for quality using a modified JBI-QARI tool. Results: Eleven studies met the inclusion criteria and quality assessment. Consumers are currently involved in leadership of palliative care teaching, research and services. Findings highlight the benefits of consumer leadership in palliative care including more relevant, higher-quality services, teaching and research. Across the included studies, it was not clear the extent to which consumer leaders had influence in relation to setting agendas across the palliative care sector. Conclusion: The findings suggest that more could be done to support consumer leadership within palliative care. Academics and clinicians might improve the relevance of their work if they are able to more meaningfully partner with consumers in systemic roles in palliative care.

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

“…There is a growing international policy imperative for involving consumers at the outset of new research and implementation projects in order to improve their quality, relevance and impact (Canadian Institutes of Health Research, 2011;Cancer Australia & Cancer Voices Australia, 2011;National Health & Medical Research Council, 2016;NHS Health Research Authority, Health & Care Research Wales, & NHS Research Scotland, 2017;Scholz, Bevan, Georgousopoulou, Collier, & Mitchell, 2019; The National Institute for Health & Care Excellence, 2014). The United Kingdom has led significant work in this area, with additional policy and study work evident from Canada, the United States and more recently, Australia (Brett et al, 2014).…”

“…Engaging consumers focused on palliative care in the conceptualisation and development of research protocols has been noted as important for over a decade (Bradburn & Maher, 2005;Scholz et al, 2019). Involving such consumers in new research initiatives increases the person with palliative care needs' sense of empowerment, of legacy and of meaning to their days whilst living with a terminal illness (Bloomer, Hutchinson, Brooks, & Botti, 2018;Bradburn & Maher, 2005).…”

“…Involving such consumers in new research initiatives increases the person with palliative care needs' sense of empowerment, of legacy and of meaning to their days whilst living with a terminal illness (Bloomer, Hutchinson, Brooks, & Botti, 2018;Bradburn & Maher, 2005). Recent consumer focused research has added to our understanding of the perspectives and experiences of people with palliative care needs, their family and/or carers, in relation to research participation (Aoun, Slatyer, Deas, & Nekolaichuk, 2017;Bloomer et al, 2018;Harrop et al, 2016;Pessin et al, 2008;Scholz et al, 2019;Terry, Olson, Ravenscroft, Wilss, & Boulton-Lewis, 2006;White & Hardy, 2010).…”

“…A more recent integrative review published in 2018, examining the perspectives and experiences of dying people in relation to research participation outlines four themes: (1) the value of research, (2) desire to help, (3) expression of self and (4) participation preferences (Bloomer et al, 2018). Beneficial aspects to participation including validation of self-worth, altruism and social interaction are well described for both people with palliative care needs and their family carers (Aoun et al, 2017;Harrop et al, 2016;Pessin et al, 2008;Scholz et al, 2019;Terry et al, 2006). Participation preferences were noted to include the desire to be approached by a clinician familiar to the patient or family, for involvement within comparator trials and to be involved in research that is not too burdensome for the person both in relation to time investment and/or invasiveness of proposed interventions (Bloomer et al, 2018).…”

“…Despite this guidance, there is little evidence to guide clinical researchers as to how best to involve consumers in palliative care clinical research (Daveson et al, 2015;Scholz et al, 2019;White & Hardy, 2010). A consultation workshop (incorporating expert presentations, discussion and nominal group work to develop recommendations) focused on this particular issue, suggests that optimal engagement with consumers focused on palliative care in meaningful research participation, depends on the following attributes: 1) Researchers being clear at the outset about a consumer's role and valuing the contribution and difference consumers make to the research outcomes; 2) Early engagement to aid productivity, quality and relevance; 3) Flexibility is essential, incorporating multiple methods for participation (virtual and face to face) to account for health fluctuations, alternate priorities and responsibilities; and 4) Assisting consumers to focus on improved productivity, quality and relevance in line with a researcher's agenda is important (Daveson et al, 2015).…”