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

Abstract

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. To develop best practice principles for conducting qualitative and quantitative research on ethnicity in palliative and end of life care. 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. 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. 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.