Vulnerability and access to care for South Asian Sikh and Muslim patients with life limiting illness in Scotland: prospective longitudinal qualitative study

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.

Social determinants and risk factors for non-communicable diseases (NCDs) in South Asian migrant populations in Europe

“…They may also have difficulties in being understood by health and social workers, as well as understanding the service providers. A study assessing the vulnerability and access to care of South Asian patients in Scotland found that migrants with poor English language skills were less able to communicate their needs and negotiate care options (Worth et al 2009). Furthermore, many cultures have their own understanding of the aetiology of diseases.…”

Dying at home: A qualitative study of the perspectives of older South Asians living in the United Kingdom

“…The authors of the latter study argued that there is a need for a deeper qualitative understanding of the cultural and other factors that may facilitate or prevent home deaths. This is important since practitioners may struggle to provide culturally competent care if they do not appreciate the complexities underpinning patients and carers' concerns and preferences 10 .…”

I never knew that! Why do people from Black and Asian Minority Ethnic groups in Leicester access hospice services less than other groups? A discussion with community groups

“…Reasons for this include gatekeeping and low referral rates (Karim et al, 2000;Worth et al, 2009), differing patterns of disease, the restrictive referral criteria for hospices, communication issues (Richardson and Koffman, 2011), difficulty in accessing services, (Johnson, 2009) and poor satisfaction and mistrust of services (Frearson et al, 2013). Evidence suggests that actively involving BAME communities would help to raise awareness and increase access to services (Gunaratnum, 2006;Thacker and Faull, 2006).…”