Vulnerability and access to care for South Asian Sikh and Muslim patients with life limiting illness in Scotland: prospective longitudinal qualitative study
BMJ 2009; 338 doi: https://doi.org/10.1136/bmj.b183 (Published 03 February 2009) Cite this as: BMJ 2009;338:b183
- Allison Worth, senior research fellow1,
- Tasneem Irshad, research fellow1,
- Raj Bhopal, Bruce and John Usher professor of public health1,
- Duncan Brown, consultant in palliative medicine2,
- Julia Lawton, senior research fellow1,
- Elizabeth Grant, research fellow1,
- Scott Murray, professor1,
- Marilyn Kendall, research fellow1,
- James Adam, consultant in palliative medicine3,
- Rafik Gardee, former director4,
- Aziz Sheikh, professor of primary care research and development1
- 1Primary Palliative Care Research Group, Centre for Population Health Sciences, University of Edinburgh, Edinburgh EH8 9DX
- 2St Columba’s Hospice, Edinburgh
- 3Marie Curie Hospice, Glasgow
- 4National Resource Centre for Ethnic Minority Health, Glasgow
- Correspondence to: A Sheikh Aziz.Sheikh{at}ed.ac.uk
- Accepted 22 October 2008
Abstract
Objectives To examine the care experiences of South Asian Sikh and Muslim patients in Scotland with life limiting illness and their families and to understand the reasons for any difficulties with access to services and how these might be overcome.
Design Prospective, longitudinal, qualitative design using in-depth interviews.
Setting Central Scotland.
Participants 25 purposively selected South Asian Sikh and Muslim patients, 18 family carers, and 20 key health professionals.
Results 92 interviews took place. Most services struggled to deliver responsive, culturally appropriate care. Barriers to accessing effective end of life care included resource constrained services; institutional and, occasionally, personal racial and religious discrimination; limited awareness and understanding among South Asian people of the role of hospices; and difficulty discussing death. The most vulnerable patients, including recent migrants and those with poor English language skills, with no family advocate, and dying of non-malignant diseases were at particularly high risk of inadequate care.
Conclusions Despite a robust Scottish diversity policy, services for South Asian Sikh and Muslim patients with life limiting illness were wanting in many key areas. Active case management of the most vulnerable patients and carers, and “real time” support, from where professionals can obtain advice specific to an individual patient and family, are the approaches most likely to instigate noticeable improvements in access to high quality end of life care. Improving access to palliative care for all, particularly those with non-malignant illnesses, as well as focusing on the specific needs of ethnic minority groups, is required.
Footnotes
We thank the patients, family carers, and professionals who participated in the studies; those who helped with recruitment; and Shahida Shah for secretarial support.
Contributors: AS conceived the study and all grant holders (AS, AW, SM, EG, MK, RB, JL, DB, JA, and RG) developed the design. TI and AW collected and analysed the data, with support from all grant holders. AW and AS drafted the paper. All authors revised and edited the paper. AS is guarantor.
Funding: Chief Scientist Office, Scottish Government Health Department. The research team is independent of the funders and the views expressed are those of the researchers, not the funding body.
Competing interests: None declared.
Ethical approval: This study was approved by Lothian research ethics committee and NHS research and development.
This is an open-access article distributed under the terms of the Creative Commons Attribution Non-commercial License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.