The practice of hope: a longitudinal, multi-perspective qualitative study among South Asian Sikhs and Muslims with life-limiting illness in Scotland

Abstract

Objectives

We explored the role of faith and religious identities in shaping end of life experiences in South Asian Muslims and Sikhs with life-limiting illnesses.

Design

Secondary analysis of data from a longitudinal, multi-perspective qualitative study of the experience of life-limiting illness and access to palliative care services among South Asian Sikhs and Muslims in Scotland. Up to three semi-structured interviews were conducted with 25 participants, 15 family members and 20 health care professionals over a period of 18 months. Analysis was informed by Mattingly's theory on hope.

Results

Hope emerged as a central construct in the accounts of illness constructed by the participants as they struggled to make sense of and uphold a meaningful life. Clinical encounters and, for some, religious beliefs served as sources of hope for participants. Hope unfolded as an active process that enabled them to live with the personal and in particular the social ramifications of their illness. Changing images of hope were formulated and reflected as illness progressed or treatments failed. These ranged from hoping for cure, prolonged life, the regaining of lost capabilities needed to fulfil social roles, or at times death when suffering and the consequences for the family became too hard to bear.

Conclusions

For those suffering from a life-limiting illness, sustaining hope is a complex challenge. The social character of hope is evident as it focuses on envisioning a life that is worth living, not only for oneself, but most importantly for social relations. Continuity in care at the end of life and a holistic approach is important in order to enable patients to articulate complex and changing notions of hope that at times are silenced within families, and for patients to feel confident in discussing the possible role of religious beliefs in shaping personal notions of hope.

Keywords:

• faith
• ethnic minorities
• death

Acknowledgements

The authors would like to thank the participants, their family members and the professionals who participated in the study, and the many people who helped with recruitment. Furthermore, we would like to thank Duncan Brown, Elizabeth Grant, Scott Murray, Marilyn Kendall, James Adam, and Rafik Gardee. We are most grateful to Shahida Shah for secretarial support.

Funding

The study was funded by the Chief Scientist's Office of the 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.

Key messages

(1)	For those who face disabling illness and its social ramifications, and are offered no or little promise of cure, hope becomes an important and complex challenge.
(2)	In this study among South Asian Sikhs and Muslims, their family members and health care professionals, hope emerged as a social practice needed in order to be able to live with the personal and in particular the social ramifications of illness.
(3)	Notions of hope were shaped by individual and contextual factors including age, gender and social relationships, and hope changed throughout the course of illness. Participants hoped for cure, prolonged life, the regaining of lost capabilities needed to fulfil social roles, and at times death.
(4)	Hope was nourished in clinical encounters and, for some, also through religious beliefs.
(5)	Continuity in care at the end of life and a holistic approach are important in order to enable patients and relatives to articulate complex and changing notions of hope and the possible role of religious beliefs for their hope.

Additional information

Funding

Funding: The study was funded by the Chief Scientist's Office of the 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.