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Rise Above: Experiences of Spirituality among Family Caregivers of Palliative Care Patients in a Hospice Setting in Pakistan
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- Author / Creator
- Lalani, Nasreen
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Background: Family caregivers play a vital role during the time of illness of a family member. Family caregivers experience various physical, emotional, psychosocial, and spiritual concerns while caring for a family member with a life-threatening illness, especially in a hospice setting. Current literature mainly adds to understanding the physical, psychological, and emotional aspects of family caregiving. Spiritual aspects of family caregiving such as personal values and the meanings that family caregivers ascribe to their caregiving roles often remain unaddressed. While caring for a seriously ill family member receiving palliative care, family caregivers go through multiple transitions, make new resolutions, adjust to changing roles and expectations, and experience grief and other complex caregiving situations where their search for meaning becomes evident. There is an increasing need to explore such experiences of spirituality among family caregivers to support their caregiving actions and practices. Purpose: The study aimed to describe the experiences of spirituality among family caregivers and how these experiences shape their family caregiving practices while caring for a terminally ill family member in a hospice setting in Karachi, Pakistan. Research Design: Interpretive descriptive design guided the study. Individual in-depth interviews were used as a method of data collection. Study setting was Baitul-Sukoon Cancer Hospital and Hospice in Karachi, Pakistan. A sample of family caregivers (n=18) and healthcare professionals (n=5) was selected from a cancer hospice facility in Karachi. A total of 28 interviews were taken from the family caregiver participants. For collateral data collection, 5 interviews were taken from the healthcare providers. The qualitative data analysis software, Quirkos, was used to manage the data. Permission for the study was obtained from the Bait-ul-Sukoon Hospice. Ethical approval was obtained from Human Research Ethics Board of the University of Alberta. Results/Findings: Demographic characteristics of family caregivers showed that mean age of family caregivers was 34.06years. 83% were Muslims, 78% were female, 72% were married, 28% did not have any formal education, and 72% were living in extended families. 61% reported their income between Canadian $160-200/month. The average caregiving period was 1.72years. Analysis of the rich descriptions revealed four themes under study which were: family love, attachment, and belongingness; honoring family values and dignity; acts of compassion and selfless service; and seeking God’s kindness and grace. All these themes led to a central theme ‘rise above or self-transcendence’. The four themes reflect the unique experiences of spirituality among family caregivers. Family caregivers identified their uncertainties, losses, and sufferings as part of life and perceived them as invitations to open themselves to the depths of their spirits and to the support, service, and love of others as they experienced ‘rise above’ or self-transcendence. Family caregivers’ uncovered meaningful engagement, a sense of belonging, and a sense of attachment while serving family and others. They highly valued the love, respect, and honor of the family, showed compassion, believed in God’s blessings and grace and experienced constant spiritual growth and self-transcendence. Conclusion: My findings present a novel perspective of spirituality and family caregiving from a eastern context. Findings signify that spirituality is a major resource of coping among family caregivers. Healthcare professionals need to acknowledge and develop spiritual care interventions to support family caregivers’ spirituality and spiritual wellbeing at the end of life in the hospice setting.
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- Graduation date
- Fall 2018
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- Type of Item
- Thesis
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- Degree
- Doctor of Philosophy
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- License
- Permission is hereby granted to the University of Alberta Libraries to reproduce single copies of this thesis and to lend or sell such copies for private, scholarly or scientific research purposes only. Where the thesis is converted to, or otherwise made available in digital form, the University of Alberta will advise potential users of the thesis of these terms. The author reserves all other publication and other rights in association with the copyright in the thesis and, except as herein before provided, neither the thesis nor any substantial portion thereof may be printed or otherwise reproduced in any material form whatsoever without the author's prior written permission.