Primary palliative care research: opportunities and challenges.

Area of Science:

• Palliative Care Research
• Primary Care Medicine
• End-of-Life Care Studies

Background:

• Primary care teams manage a significant proportion of deaths in England and Wales (45.6%), highlighting their central role in end-of-life care.
• The Community Care Pathways at the End of Life (CAPE) study focused on primary care for patients in the last six months of life.
• This paper addresses the opportunities and challenges in UK primary palliative care research, using the CAPE study as a case example.

Purpose of the Study:

• To investigate primary care for patients nearing the end of life.
• To identify and describe methodological, ethical, logistical, and gatekeeping challenges in primary palliative care research.
• To present strategies used to overcome these research challenges.

Main Methods:

• A mixed-methods approach was employed.
• Quantitative data were extracted from General Practitioner (GP) and District Nurse (DN) records of 400 deceased patients across 20 practices.
• Qualitative data were gathered through focus groups with GPs and DNs, and interviews with bereaved carers and healthcare professionals.

Main Results:

• Significant difficulties were encountered in obtaining ethical permissions, recruiting GPs, DNs, and bereaved carers, and in collecting both quantitative and qualitative data.
• The research team demonstrated flexibility, perseverance, and received strong user group support to overcome these obstacles.
• The study successfully generated a unique dataset on primary palliative care.

Conclusions:

• Conducting primary palliative care research presents substantial methodological, ethical, and logistical challenges.
• Overcoming these challenges requires adaptability, persistence, and robust stakeholder engagement.
• The CAPE study's success in generating a unique dataset underscores the feasibility and importance of such research.