Principles for developing,undertaking,and reporting research with minority ethnic populations in palliative and end of life care: A modified Delphi study
Restricted accessResearch articleFirst published online March, 2026
Principles for developing,undertaking,and reporting research with minority ethnic populations in palliative and end of life care: A modified Delphi study
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.
PivodicLJenningsNMatthysM. The problems of using migration background as a conceptual framework in palliative care research. Palliat Med2021; 35: 2028–2029.
2.
United Nations Department of Economic and Social Affairs. Population division (2020). International migration 2020 highlights (ST/ESA/SER.A/452). United Nations Department of Economic and Social Affairs, Population Division, 2020.
3.
KhiroyaHWillisD. Lack of racial diversity within the palliative medicine workforce: does it affect our patients?BMJ Support Palliat Care2022; 12: 49–51.
4.
SallnowLSmithRAhmedzaiSH, et al. Report of the Lancet Commission on the value of death: bringing death back into life. Lancet2022; 399: 837–884.
5.
ClarkeGCrooksJBennettMI, et al. Experiences of pain and pain management in advanced disease and serious illness for people from South Asian communities in Leeds and Bradford: a qualitative interview study. BMC Palliat Care2023; 22: 90.
6.
KoffmanJHoYKDaviesJ, et al. Does ethnicity affect where people with cancer die? A population-based 10 year study. PLoS One2014; 9: e95052.
7.
CrooksJTrotterSClarkeG. How does ethnicity affect presence of advance care planning in care records for individuals with advanced disease? A mixed-methods systematic review. BMC Palliat Care2023; 22: 43.
8.
MaylandCRPowellRAClarkeGC, et al. Bereavement care for ethnic minority communities: a systematic review of access to, models of, outcomes from, and satisfaction with, service provision. PLoS One2021; 16: e0252188.
9.
AlguKWalesJAndersonM, et al. Naming racism as a root cause of inequities in palliative care research: a scoping review. BMC Palliat Care2024; 23: 143.
10.
ChukwusaELaw-ClucasSGullifordM, et al. Ethnic disparities in opioid prescribing for cancer pain and associated emergency department visits and hospital admissions in the last three months of life: a retrospective cohort study. Br J Cancer2025; 133: 1675–1685.
11.
MeierEAGallegosJVThomasLPM, et al. Defining a good death (successful dying): literature review and a call for research and public dialogue. Am J Geriatr Psychiatry2016; 24: 261–271.
12.
SelmanLESuttonEMedeiros MirraR, et al. ‘Sadly I think we are sort of still quite white, middle-class really’ – inequities in access to bereavement support: findings from a mixed methods study. Palliat Med2023; 37: 586–601.
13.
KoffmanJDonaldsonNHotopfM, et al. Does ethnicity matter? Bereavement outcomes in two ethnic groups living in the United Kingdom. Palliat Support Care2005; 3: 183–190.
14.
CainCLMcCleskeyS. Expanded definitions of the ‘good death’? Race, ethnicity and medical aid in dying. Sociol Health Illn2019; 41: 1175–1191.
15.
WalterT. Historical and cultural variants on the good death. BMJ2003; 327: 218–220.
16.
BorgstromE. What is a good death? A critical discourse policy analysis. BMJ Support Palliat Care2024; 14: e2546–e2553.
17.
MarmotMAllenJGoldblattP, et al. Build back fairer: the COVID-19 marmot review. The pandemic, socioeconomic and health inequalities in England. Institute for Health Equity, 2020.
18.
BajwahSKoffmanJHussainJ, et al. Specialist palliative care services response to ethnic minority groups with COVID-19: equal but inequitable-an observational study. BMJ Support Palliat Care2021; 14: e1478–e1487.
19.
SzeSPanDNevillCR, et al. Ethnicity and clinical outcomes in COVID-19: a systematic review and meta-analysis. EClinicalMedicine2020; 29: 100630.
20.
IrizarPPanDKapadiaD, et al. Ethnic inequalities in COVID-19 infection, hospitalisation, intensive care admission, and death: a global systematic review and meta-analysis of over 200 million study participants. EClinicalMedicine2023; 57: 101877.
21.
IrizarPKapadiaDAmeleS, et al. Pathways to ethnic inequalities in COVID-19 health outcomes in the United Kingdom: a systematic map. Soc Sci Med2023; 329: 116044.
KoffmanJBajwahSDaviesJM, et al. Researching minoritised communities in palliative care: an agenda for change. Palliat Med2023; 37: 530–542.
24.
CornellSHartmannD. Ethnicity and race: making identities in a changing world. 2nd ed. Pine Forge Press, 2007.
25.
RhodesRLBarrettNJEjemDB, et al. A review of race and ethnicity in hospice and Palliative Medicine Research: representation matters. J Pain Symptom Manag2022; 64: e289–e299.
26.
SelvakumaranKSleemanKEDaviesJM. How good are we at reporting the socioeconomic position, ethnicity, race, religion and main language of research participants? A review of the quality of reporting in palliative care intervention studies. Palliat Med2024; 38: 396–399.
27.
KhuntiKRoutenAPareekM, et al. The language of ethnicity. BMJ2020; 371: m4493.
28.
FlanaginAFreyTChristiansenSL, et al. Updated guidance on the reporting of race and ethnicity in medical and Science Journals. JAMA2021; 326: 621–627.
29.
MilnerAJumbeS. Using the right words to address racial disparities in COVID-19. Lancet Public Health2020; 5: e419–e420.
LairdPChangABJackyJ, et al. Conducting decolonizing research and practice with Australian First Nations to close the health gap. Health Res Policy Syst2021; 19: 127.
32.
SmithLT. Decolonizing methodologies: research and indigenous peoples. 3rd ed. Zed Books, 2021.
33.
TrevelyanEGRobinsonPN. Delphi methodology in health research: how to do it?Eur J Integr Med2015; 7: 423–428.
34.
JüngerSPayneSABrineJ, et al. Guidance on conducting and REporting DElphi Studies (CREDES) in palliative care: recommendations based on a methodological systematic review. Palliat Med2017; 31: 684–706.
35.
GutierrezO. Experimental techniques for information requirements analysis. Inf Manage1989; 16: 31–43.
36.
BakerJLovellKHarrisN. How expert are the experts? An exploration of the concept of ‘expert’ within Delphi panel techniques. Nurse Res2006; 14: 59–70.
37.
PowellC. The Delphi technique: myths and realities. J Adv Nurs2003; 41: 376–382.
38.
BraunVClarkeV. Using thematic analysis in psychology. Qual Res Psychol2006; 3: 77–101.
EliasAParadiesY. The costs of institutional racism and its ethical implications for healthcare. J Bioeth Inq2021; 18: 45–58.
41.
MirGSalwaySKaiJ, et al. Principles for research on ethnicity and health: the Leeds Consensus Statement. Eur J Public Health2013; 23: 504–510.
42.
MitchellSTurnerNFryerK, et al. A framework for more equitable, diverse, and inclusive patient and public involvement for palliative care research. Res Involvement Engagem2024; 10: 19.
43.
ButlerHGottMPrebbleDK, et al. Palliative care research utilising intersectionality: a scoping review. BMC Palliat Care2023; 22: 189.
44.
JohnsonHOgdenMBrightonLJ, et al. Patient and public involvement in palliative care research: what works, and why? A qualitative evaluation. Palliat Med2021; 35: 151–160.
45.
DaviesJMSleemanKELenizJ, et al. Socioeconomic position and use of healthcare in the last year of life: a systematic review and meta-analysis. PLoS Med2019; 16: e1002782.
46.
FioritoT. Beyond research as a dirty word? Searching for ethical and reflexive ways of doing research with and for migrant communities. Migr Stud2024; 12: mnad027.
47.
RedwoodSGillPS. Under-representation of minority ethnic groups in research — call for action. Br J Gen Pract2013; 63: 342–343.
BrockieTNHillKDavidsonPM, et al. Strategies for culturally safe research with Native American communities: an integrative review. Contemp Nurse2022; 58: 8–32.
50.
SuriSHarrisonSLBevin-NichollsA, et al. Patient and public involvement and engagement: do we need an ‘ethical anchor’?Res Involvement Engagem2024; 10: 113.
51.
AlizadehSChavanM. Cultural competence dimensions and outcomes: a systematic review of the literature. Health Soc Care Community2016; 24: e117–e130.
52.
CurtisEJonesRTipene-LeachD, et al. Why cultural safety rather than cultural competency is required to achieve health equity: a literature review and recommended definition. Int J Equity Health2019; 18: 174.
53.
NickelPJ. Vulnerable populations in research: the case of the seriously ill. Theor Med Bioeth2006; 27: 245–264.
54.
GordonBG. Vulnerability in research: basic ethical concepts and general approach to review. Ochsner J2020; 20: 34–38.
55.
KoffmanJMorganMEdmondsP, et al. Vulnerability in palliative care research: findings from a qualitative study of black Caribbean and white British patients with advanced cancer: Table 1. J Med Ethics2009; 35: 440–444.
56.
ParsonsMRatcliffJEganB, et al. The UK research ethics committee: making the case for better serving the underserved - can we do better?Clin Med2024; 24: 100012.
WithamGRegierNGAbshire SaylorM, et al. A scoping review of global patterns in reporting race, ethnicity, nationality, or religion in palliative care randomized controlled trials: recommendations for transparency. Palliat Med2025; 39: 190–220.
59.
ClarkeGHussainJAAllsopMJ, et al. Ethnicity and palliative care: we need better data - five key considerations. BMJ Support Palliat Care2023; 13: 429–431.
60.
MarmotMAllenBT, et al. Health equity in England: the Marmot review 10 years on. The Health Foundation, 2020.
61.
RichardsN. The equity turn in palliative and end of life care research: lessons from the poverty literature. Sociol Compass2022; 16: e12969.
62.
BradshawARichardsNHussainJA, et al. We need to talk about social class: why theories of social class matter for understanding inequities in palliative and end-of-life care. Palliat Med2024; 38: 1076–1078.
63.
BowersSPChinMO’RiordanM, et al. The end of life experiences of people living with socio-economic deprivation in the developed world: an integrative review. BMC Palliat Care2022; 21: 193.
64.
KoffmanJBurkeGDiasA, et al. Demographic factors and awareness of palliative care and related services. Palliat Med2007; 21: 145–153.
65.
BoyntonPMGreenhalghT. Selecting, designing, and developing your questionnaire. BMJ2004; 328: 1312–1315.
66.
BoyntonPMWoodGWGreenhalghT. Reaching beyond the white middle classes. BMJ2004; 328: 1433–1436.
67.
QuestTEPeriyakoilVSQuillTE, et al. Racial equity in palliative care. J Pain Symptom Manag2021; 61: 435–437.
68.
HassonFKeeneySMcKennaH. Research guidelines for the Delphi survey technique. J Adv Nurs2000; 32: 1008–1015.
69.
KeeneySHassonFMcKennaHP. A critical review of the Delphi technique as a research methodology for nursing. Int J Nurs Stud2001; 38: 195–200.
70.
FranklinPArberAReamE. Priorities for enhancing nurses’ and social workers’ competence and confidence in helping families support dependent children through parental death. A classic-Delphi survey. BMC Palliat Care2024; 23: 122.
71.
EtikanIMusaSAAlkassimRS. Comparison of convenience sampling and purposive sampling. Am J Theor Appl Stat2016; 5(1): 4.
72.
MarcewiczLKunihiroSKCurseenKA, et al. Application of critical race theory in Palliative Care Research: a scoping review. J Pain Symptom Manag2022; 63: e667–e684.
73.
DavisLEWebberCDattaGD, et al. Assessing research methodologies used to evaluate inequalities in end-of-life cancer care research: a scoping review protocol. BMJ Open2022; 12: e064743.
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
