Primary palliative care research: opportunities and challenges

Abstract

IntroductionPrimary care has a central role in palliative and end of life care: 45.6% of deaths in England and Wales occur under the care of primary care teams at home or in care homes. The Community Care Pathways at the End of Life (CAPE) study investigated primary care provided for patients in the final 6 months of life. This paper highlights the opportunities and challenges associated with primary palliative care research in the UK, describing the methodological, ethical, logistical and gatekeeping challenges encountered in the CAPE study and how these were addressed.The study methodsUsing a mixed-methods approach, quantitative data were extracted from the general practitioner (GP) and district nurse (DN) records of 400 recently deceased patients in 20 GP practices in the East of England. Focus groups were conducted with some GPs and DNs, and individual interviews held with bereaved carers and other GPs and DNs.The challenges addressedConsiderable difficulties were encountered with ethical permissions, with GP, DN and bereaved carer recruitment and both quantitative and qualitative data collection. These were overcome with flexibility of approach, perseverance of the research team and strong user group support. This enabled completion of the study which generated a unique primary palliative care data set.

The importance of methodology to palliative care research: A new article type for Palliative Medicine

“…15 In addition to clinician gatekeeping when recruiting for research participation during sensitive consultations, palliative and end-of-life research can encounter multiple ethical challenges in conducting research with vulnerable populations. 5,[16][17][18] High-quality ethically-sound methodologies in palliative care research are needed to protect individuals but also to ensure that research is conducted in a way that serves interests of individuals, groups, and society at large. 5,19,20 To increase relevance to groups and society, patient and public can be involved in palliative care research, yet there is limited evidence to describe the best approaches for populations affected by life-limiting illnesses.…”

Successful Strategies and Areas of Improvement–Lessons Learned from Design and Conduction of a Randomized Placebo-Controlled Trial in Palliative Care, ‘Palliative-D’

“…The study team members had access to portable computers with both electronic charts and an electronic database, which facilitated data handling. The same electronic medical record was used in all three study sites, reducing the obstacles facing many other palliative care researchers [76].…”

Patient and public involvement in general practice research

“…3 The outcome-oriented model of designing research with public contributions, especially those with lived experiences of the research topic, is regularly cited as improving research methods, participant information summaries, study recruitment, and retention. 1,2,5,11,12 However, there is conflicting evidence on what impact public contributions have on research outcomes or what the effective components of public contributions are. 3,10,11 PPI work is heavily promoted in research policy despite the lack of clear evidence about the nature and extent of its contribution.…”

“…8 Conversely, 'experienced' public representatives from established PPI groups are often easier to find and have a clearer understanding of what they are being asked to contribute to ensure the research is appropriate, robust, and makes sense to potential participants. 12 We have found that working with both 'novice' and 'experienced' public contributors ensures an optimal broad range of advice in the earlier stages of clarifying research questions and initial design issues. More detailed 'experienced' public contributor advice is particularly helpful in the later stages of refining research methods, designing participant-facing material, and subsequent interpretation of emergent data analysis and dissemination.…”

“…8 It is our experience that, when adequately supported and resourced, working with public contributors is illuminating, rewarding, and makes a genuine contribution to general practice research studies. 1,2,12…”