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Social support for South Asian Muslim parents with life-limiting illness living in Scotland: a multiperspective qualitative study
  1. Eleni Margareta Gaveras1,
  2. Maria Kristiansen1,2,
  3. Allison Worth3,
  4. Tasneem Irshad3,
  5. Aziz Sheikh3,4
  1. 1Danish Research Centre for Migration, Ethnicity and Health, Department of Public Health, University of Copenhagen, Copenhagen K, Denmark
  2. 2Health Sciences Department, College of Arts and Sciences, Qatar University, Doha, Qatar
  3. 3Primary Palliative Care Research Group, Centre for Population Health Sciences, The University of Edinburgh, Edinburgh, UK
  4. 4Harkness Fellow in Health Care Policy and Practice, Division of General Internal Medicine and Primary Care, Brigham and Women's Hospital/Harvard Medical School, Boston, Massachusetts, USA
  1. Correspondence to Dr Maria Kristiansen; Maria.Kristiansen{at}qu.edu.qa

Abstract

Objective To explore experiences of social support needs among South Asian Muslim patients with life-limiting illness, living in Scotland, who are parents of young children.

Design Secondary analysis of data from a multiperspective, longitudinal Scottish study involving in-depth 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.

Keywords
  • Social support
  • Qualitative Research
  • Supportive Care
  • Palliative Care
  • Minority Groups

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 3.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/3.0/

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