Principles for developing, undertaking, and reporting research with minority ethnic populations in palliative and end of life care: A modified Delphi study

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Abstract
Background: Minority ethnic populations face persistent inequities in end-of-life care, yet research often fails to capture these disparities due to methodological limitations. Robust approaches are urgently needed to investigate and address these inequities. Aim: To develop best practice principles for conducting qualitative and quantitative research on ethnicity in palliative and end of life care. Design: We conducted a modified Delphi study online, comprising one qualitative round and two quantitative rounds. Round 1 collected open-ended responses to generate 97 statements. In rounds 2 and 3, participants rated these on a 5-point Likert scale; statements were retained if ⩾75% rated them ‘very’ or ‘extremely important’. Consensus statements informed the development of guiding principles, which were further refined during a stakeholder workshop. Participants were UK-based and included minority ethnic patients, carers, community representatives, researchers, health professionals, and palliative care specialists. Results: Forty-five participants completed round 1, 43 round 2, and 45 round 3. Of 97 statements, 78 (80%) reached consensus in round 2, and all 78 (100%) in round 3. Seventeen stakeholders attended the workshop, resulting in 13 consensus-based guiding principles. Conclusions: This UK-based Delphi established 13 key principles to strengthen research involving minority ethnic populations in palliative and end-of-life care. Implementing these principles will help address inequities and improve the quality and impact of future studies, with validation needed in international contexts.
Funding Information
  • Medical Research Council (MR/X011275/1)
  • National Institute for Health and Care Research (NIHR200166)

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