Abstract
BackgroundThere has been increasing evidence and debate on palliative care research priorities and the international research agenda. To date, however, there is a lack of synthesis of this evidence, examining commonalities, differences, and gaps. To identify and synthesize literature on international palliative care research priorities originating from Western countries mapped to a quality assessment framework.MethodsA systematic review of several academic and grey databases were searched from January 2008–June 2019 for studies eliciting research priorities in palliative care in English. Two researchers independently reviewed, critically appraised, and conducted data extraction and synthesis.ResultsThe search yielded 10,235 articles (academic databases, n = 4108; grey literature, n = 6127), of which ten were included for appraisal and review. Priority areas were identified: service models; continuity of care; training and education; inequality; communication; living well and independently; and recognising family/carer needs and the importance of families. Methodological approaches and process of reporting varied. There was little representation of patient and caregiver driven agendas. The priorities were mapped to the Donabedian framework for assessing quality reflecting structure, process and outcomes and key priority areas.ConclusionsLimited evidence exists pertaining to research priorities across palliative care. Whilst a broad range of topics were elicited, approaches and samples varied questioning the credibility of findings. The voice of the care provider dominated, calling for more inclusive means to capture the patient and family voice. The findings of this study may serve as a template to understand the commonalities of research, identify gaps, and extend the palliative care research agenda.
Highlights
There has been increasing evidence and debate on palliative care research priorities and the international research agenda
A further search of the grey literature was conducted on the following sites in April and May 2019: OpenGrey, European Association of Palliative Care (EAPC) conferences, Australian and New Zealand Society of Palliative Medicine and Google
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]. These were the only studies in which patients shaped the research priorities
Summary
There has been increasing evidence and debate on palliative care research priorities and the international research agenda. Priority setting is recognised as an essential task to help direct finite resources to support research [2, 11] Such exercises are considered integral to the research process to guide and stimulate funding, fuel debate, and to strengthen the role of stakeholders in establishing the research agenda [12]. Such approaches should help to underpin the development and improvement of palliative care for the patient and caregiver. Priorities have been identified by care setting [20, 21], patient demographic characteristics [22, 23], discipline focus [24, 25], and according to the specific components of palliative care such as pain [26] and spiritual care [27]
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