Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress
Clinical Collections
Advances in Alzheimer’s

At a glance: The STEP trials

A round-up of the STEP phase 3 clinical trials evaluating semaglutide for weight loss in people with overweight or obesity.
ADVANCED SEARCH
Log in
Top
BMC Palliative Care
Published in: BMC Palliative Care 1/2019

Open Access 01-12-2019 | Care | Research article

How to help researchers in palliative care improve responsiveness to migrants and other underrepresented populations: developing and testing a self-assessment instrument

Authors: M. Torensma, B. D. Onwuteaka-Philipsen, K. L. Strackee, M. G. Oosterveld-Vlug, X. de Voogd, D. L. Willems, J. L. Suurmond

Published in: BMC Palliative Care | Issue 1/2019

Login to get access

Abstract

Background

European migrant populations are aging and will increasingly be in need of palliative and end of life care. However, migrant patients are often underrepresented in palliative care research populations. This poses a number of drawbacks, such as the inability to generalize findings or check the appropriateness of care innovations amongst migrant patients. The aim of this study was to develop a self-assessment instrument to help palliative care researchers assess and find ways to improve their projects’ diversity responsiveness in light of the aging migrant population, and determine whether in addition to older migrants other groups should be included in the instrument’s focus.

Methods

After developing a concept instrument based on the standards for equity in healthcare for migrants and other vulnerable groups, literature review and interviews with palliative care researchers, we conducted a Delphi study to establish the content of the self-assessment instrument and used think aloud methods in a study involving seven projects for usability testing of the self-assessment instrument.

Results

A Delphi panel of 22 experts responded to a questionnaire consisting of 3 items concerning the target group and 30 items on diversity responsiveness measures. Using an a priori set consensus rate of 75% to include items in the self-assessment instrument, experts reached consensus on 25 out of 30 items on diversity responsiveness measures. Findings furthermore indicate that underserved groups in palliative care other than migrant patients should be included in the instrument’s focus. This was stressed by both the experts involved in the Delphi study and the researchers engaged in usability testing. Usability testing additionally provided insights into learnability, error-rate, satisfaction and applicability of the instrument, which were used to revise the self-assessment instrument.

Conclusions

The final self-assessment instrument includes a list of 23 diversity responsiveness measures to be taken at varying stages of a project, and targets all groups at risk of being underrepresented. This instrument can be used in palliative care research to assess diversity responsiveness of projects and instigate action for improvement.
Appendix
Available only for authorised users
Literature
1.
2.
Walkden G, Anderson E, Vink M, Tilling K, Howe L, Ben-Shlomo Y. Frailty in older-age European migrants: cross-sectional and longitudinal analyses of the survey of health, aging and retirement in Europe (SHARE). Soc Sci Med. 2018;213:1–11.PubMedCrossRef
3.
Evans N, Menaca A, Andrew EV, Koffman J, Harding R, Higginson IJ, et al. Systematic review of the primary research on minority ethnic groups and end-of-life care from the United Kingdom. J Pain Symptom Manag. 2012;43(2):261–86.CrossRef
4.
Fang ML, Sixsmith J, Sinclair S, Horst G. A knowledge synthesis of culturally- and spiritually-sensitive end-of-life care: findings from a scoping review. BMC Geriatr. 2016;16:107.PubMedPubMedCentralCrossRef
5.
6.
de Graaff FM, Francke AL, van den Muijsenbergh ME, van der Geest S. 'Palliative care': a contradiction in terms? A qualitative study of cancer patients with a Turkish or Moroccan background, their relatives and care providers. BMC palliative care. 2010;9:19.PubMedPubMedCentralCrossRef
7.
de Graaff FM, Mistiaen P, Devillé WL, Francke AL. Perspectives on care and communication involving incurably ill Turkish and Moroccan patients, relatives and professionals: a systematic literature review. BMC palliative care. 2012;11(1):17.PubMedPubMedCentralCrossRef
8.
Gysels M, Evans N, Menaca A, Andrew EV, Bausewein C, Gastmans C, et al. Culture is a priority for research in end-of-life care in Europe: a research agenda. J Pain Symptom Manag. 2012;44(2):285–94.CrossRef
9.
Bonevski B, Randell M, Paul C, Chapman K, Twyman L, Bryant J, et al. Reaching the hard-to-reach: a systematic review of strategies for improving health and medical research with socially disadvantaged groups. BMC Med Res Methodol. 2014;14(1):42.PubMedPubMedCentralCrossRef
10.
Albain KS, Unger JM, Crowley JJ, Coltman CA, Hershman DL. Racial disparities in cancer survival among randomized clinical trials patients of the southwest oncology group. J Natl Cancer Inst. 2009;101(14):984–92.PubMedPubMedCentralCrossRef
11.
Valentine NB, de Silva A, Kawabata K, Darby C, Murray CJL, Evans DB. Health system responsiveness: Concepts, domains and operationalization. In: Murray, C.J.L., Evans, D., editors. Health systems performance assessment: Debates, methods, and empiricism. World Health Organization, Geneva. 2003. p. 573–593.
12.
Seeleman C, Essink-Bot ML, Stronks K, Ingleby D. How should health service organizations respond to diversity? A content analysis of six approaches. BMC Health Serv Res. 2015;15:510.PubMedPubMedCentralCrossRef
13.
Chiarenza A. Standards for equity in health care for migrants and other vulnerable groups self-assessment tool for pilot implementation. HPH Task Force on Migrant-Friendly and Culturally Competent Health Care; 2014.
14.
Keeney S, Hasson F, McKenna HP. A critical review of the Delphi technique as a research methodology for nursing. Int J Nurs Stud. 2001;38(2):195–200.PubMedCrossRef
15.
Day J, Bobeva MJ. A generic toolkit for the successful management of Delphi studies. EJBRM. 2005;3(2):103–16.
16.
Spencer L, Ritchie J. Qualitative data analysis for applied policy research. In: Huberman AM, Miles MB, editors. The qualitative Researcher's companion. Thousand Oaks: SAGE; 2002.
17.
van den Haak M. A penny for your thoughts: investigating the validity and reliability of think-aloud protocols for usability testing: University of Twente, Enschede; 2008.
18.
19.
Crenshaw K. Mapping the margins: Intersectionality, identity politics, and violence against women of colour. Stanford Law Rev. 1991;43(6):1241–300.CrossRef
20.
Chiarenza A. Developments in the concept of 'cultural competence'. In: Ingleby D, Antonio C, Walter D, Kotsioni I, editors. Inequalities in healthcare for migrants and ethnic minorities. Antwerp - Apeldoorn: Garant Publishers; 2012. p. 66–81.
21.
Cattacin S, Chiarenza A, Domenig D. Equity standards for health care organisations: a theoretical framework. Divers Equal Health Care. 2013;10(4):249–58.
22.
Vertovec S. Super-diversity and its implications. Ethn Racial Stud. 2007;30(6):1024–54.CrossRef
23.
Yuval-Davis N. Intersectionality and feminist politics. Eur J Wom Stud. 2006;13(3):193–209.CrossRef
24.
Bauer GR. Incorporating intersectionality theory into population health research methodology: challenges and the potential to advance health equity. Soc Sci Med. 2014;110:10–7.PubMedCrossRef
25.
Quinn SC, Butler J III, Fryer CS, Garza MA, Kim KH, Ryan C, et al. Attributes of researchers and their strategies to recruit minority populations: results of a national survey. Contemp Clin Trials. 2012;33(6):1231–7.PubMedPubMedCentralCrossRef
26.
Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, et al. Patient engagement in research: a systematic review. BMC Health Serv Res. 2014;14(1):89.PubMedPubMedCentralCrossRef
27.
Higginson IJ, Evans CJ, Grande G, Preston N, Morgan M, McCrone P, et al. Evaluating complex interventions in end of life care: the MORECare statement on good practice generated by a synthesis of transparent expert consultations and systematic reviews. BMC Med. 2013;11(1):111.PubMedPubMedCentralCrossRef
Metadata
Title
How to help researchers in palliative care improve responsiveness to migrants and other underrepresented populations: developing and testing a self-assessment instrument
Authors
M. Torensma
B. D. Onwuteaka-Philipsen
K. L. Strackee
M. G. Oosterveld-Vlug
X. de Voogd
D. L. Willems
J. L. Suurmond
Publication date
01-12-2019
Publisher
BioMed Central
Keyword
Care
Published in
BMC Palliative Care / Issue 1/2019
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-019-0470-1

Other articles of this Issue 1/2019

BMC Palliative Care 1/2019 Go to the issue

Research article

Impact of palliative chemotherapy and best supportive care on overall survival and length of hospitalization in patients with incurable Cancer: a 4-year single institution experience in Japan

Research article

“An odyssey without receiving proper care” – experts’ views on palliative care provision for patients with migration background in Germany

Research article

Towards appropriate information provision for and decision-making with patients with limited health literacy in hospital-based palliative care in Western countries: a scoping review into available communication strategies and tools for healthcare providers

Research article

Multiple and multidimensional life transitions in the context of life-limiting health conditions: longitudinal study focussing on perspectives of young adults, families and professionals

Research article

End-of-life and palliative care of patients on maintenance hemodialysis treatment: a focus group study

Research article

Volunteers in a biography project with palliative care patients – a feasibility study