Involving healthcare professionals and family carers in setting research priorities for end-of-life care

Abstract

It is important to ensure regional variances are considered when setting future end-of-life research priorities, given the differing demographics and service provision. This project sought to identify end-of-life research priorities within Greater Manchester (United Kingdom). Following an initial scoping exercise, six topics within the 10 national priorities outlined by The Palliative and end-of-life care Priority Setting Partnership were selected for exploration. A workshop involving 32 healthcare professionals and a consultation process with 26 family carers was conducted. Healthcare professionals and carers selected and discussed the topics important to them. The topics selected most frequently by both healthcare professionals and carers were 'Access to 24 hour care', 'Planning end-of-life care in advance' and 'Staff and carer education'. Healthcare professionals also developed research questions for their topics of choice which were refined to incorporate carers' views. These questions are an important starting point for future end-of-life research within Greater Manchester.

International palliative care research priorities: A systematic review

“…The data extracted from the ten included studies [15,21,[43][44][45][46][47][48][49][50] are presented in Appendix. The largest group to shape the research priorities were academic, commissioners and healthcare professionals (HCPs) and these were included in eight of the ten studies [15, 21, 43-45, 47, 49, 50].…”

“…The largest group to shape the research priorities were academic, commissioners and healthcare professionals (HCPs) and these were included in eight of the ten studies [15, 21, 43-45, 47, 49, 50]. Families and carers were the second largest group to contribute to the data and were included in two studies [15,47] . Patients were the sole contributor in one study [48] and contributed as part of a group of patients and families in two other studies [21,43].…”

“…The geographical location of the studies was diverse. Three of studies were based in the United Kingdom [44, 47,48], while one was conducted in both the United Kingdom and Ireland [20]. Each of the remaining five studies geographical location were conducted in New Zealand [21], United States [49], Canada [43], Australia [45] and Africa [50] respectively.…”

“…However, there was little consistency in how consensus was gained across the studies as methods were operationalised in different ways. For instance, two studies [21,45] utilised the Delphi technique while others used workshops [15,47,49], a nominal group technique [44,50] or a mixed methods approach involving literature review interviews and online surveys [43] respectively. One study used a systematic review methodology alongside an innovative analytical approach to synthesise evidence from review articles or consensus reports to develop a list of research priorities [46].…”

“…This theme focused centrally on the provision of out of hours (OOH) care and home care services across all disease groups [43,44]. Understanding community care provision, resources, and models and barriers to 24-h care underpinned this theme [15,21,[43][44][45][47][48][49], with a particular focus on explicating the benefits of home care, understanding and meeting patients' needs, and mechanisms to maintaining independence and enabling patients to remain at home. There is need for better understanding and implementation of a model of care which identifies and delivers the palliative care needs of non-cancer patients in the community [44] and other non-hospital settings (such as primary care or nursing homes) [49].…”