Social support for South Asian Muslim parents with life-limiting illness living in Scotland: A multiperspective qualitative study

Abstract

Objective: To explore experiences of social support needs among South Asian Muslim patients with lifelimiting illness, living in Scotland, who are parents of young children. Design: Secondary analysis of data from a multiperspective, longitudinal Scottish study involving indepth semistructured interviews with patients, their nominated carers and healthcare professionals. Data were analysed using interpretive phenomenological analysis. Setting: Edinburgh, Scotland. Participants: South-Asian Muslim patients with life-limiting illness with children under the age of 18 (n=8), their carer (n=6) and their healthcare professional. Main outcome measures: Access and provision of social support in palliative care. Results: Open-ended qualitative interviews identified four main themes: (1) parental sadness over being unable to provide tangible support; (2) parental desire to continue to provide emotional support; (3) limited availability of informal social support networks; and (4) differing perspectives between healthcare professionals and patients on patient access to social support sources, with a subtheme being the capacity of male carers to provide social support. South-Asian parents at the end of life had limited access to extended-network support. Gender roles appeared as challenging for healthcare providers who at times overestimated the amount of support a female carer could provide and underestimated the amount of support male carers provided. Implications for practice include the need for greater awareness by healthcare providers of the social support needs of ethnic minority and migrant parents with life-limiting illnesses and especially an awareness of the importance of the role of male and female carers. Further research is needed to explore how the timing of migration impacts the need for and availability of tangible and emotional informal social support among ethnic minority parents with life-limiting illness.