Patients' and Caregivers' Contested Perspectives on Spiritual Care for Those Affected by Advanced Illnesses: A Qualitative Descriptive Study

Clare O'Callaghan; Joanne Brooker; William de Silva; David Glenister; Adelaide Melia Cert 4th; Xavier Symons; David Kissane; Natasha Michael

doi:10.1016/j.jpainsymman.2019.08.004

Patients' and Caregivers' Contested Perspectives on Spiritual Care for Those Affected by Advanced Illnesses: A Qualitative Descriptive Study

J Pain Symptom Manage. 2019 Dec;58(6):977-988. doi: 10.1016/j.jpainsymman.2019.08.004. Epub 2019 Aug 9.

Authors

Clare O'Callaghan¹, Joanne Brooker², William de Silva³, David Glenister⁴, Adelaide Melia Cert 4th⁵, Xavier Symons⁶, David Kissane⁷, Natasha Michael⁸

Affiliations

¹ Palliative and Supportive Care Research Department, Cabrini Health, Malvern, Victoria, Australia; Institute for Ethics & Society, The University of Notre Dame Australia, New South Wales, Australia; Departments of Psychosocial Cancer Care and Medicine, St. Vincent's Hospital Fitzroy, The University of Melbourne, Victoria, Australia. Electronic address: COCallaghan@cabrini.com.au.
² School of Public Health and Preventive Medicine, Monash University, Clayton, Victoria, Australia.
³ Faculty of Medicine, Nursing and Health Sciences, Monash University, Clayton, Victoria, Australia.
⁴ Centre for Clinical Pastoral Education, Royal Melbourne Hospital, Parkville, Victoria, Australia.
⁵ Palliative and Supportive Care Research Department, Cabrini Health, Malvern, Victoria, Australia.
⁶ Institute for Ethics & Society, The University of Notre Dame Australia, New South Wales, Australia.
⁷ Palliative and Supportive Care Research Department, Cabrini Health, Malvern, Victoria, Australia; Szalmuk Family Psycho-oncology Research Unit, Cabrini Health, Malvern, Melbourne, Victoria, Australia; School of Medicine, The University of Notre Dame Australia, New South Wales, Australia.
⁸ Palliative and Supportive Care Research Department, Cabrini Health, Malvern, Victoria, Australia; Faculty of Medicine, Nursing and Health Sciences, Monash University, Clayton, Victoria, Australia; School of Medicine, The University of Notre Dame Australia, New South Wales, Australia.

PMID: 31404641
DOI: 10.1016/j.jpainsymman.2019.08.004

Abstract

Context: Spiritual care refers to practices and rituals addressing spiritual/religious concerns. It supports coping with loss and finding hope, meaning, and peace. Although integral to palliative care, its implementation is challenging.

Objective: To understand an Australian cohort of patients' and caregivers' perspectives about experiencing and optimizing spiritual care in the context of advanced illness.

Methods: Patients and caregivers of patients with ≤12 month prognosis were recruited from a broader spiritual study via criterion sampling and agreed to opt-in interviews. Participants from an Australian, metropolitan health service received a spiritual care definition and were interviewed. Transcripts were analyzed using qualitative description.

Results: 30 patients (17 male; mean age 70 years) and 10 caregivers (six male; mean age 58.9 years) participated. 27 identified as Christian, and 10 had no religion. Participants described multifaceted and contested beliefs about spirituality. Many queried the tangibility of spirituality, but all valued respectful staff who affirmed personhood, that is, each individual's worth, especially when care exceeded expectations. They also resonated with positive organizational and environmental tones that improved holistic well-being. Participants stressed the importance of the hospital's welcoming context and skilled care, which comforted and reassured.

Conclusion: Although many patients and caregivers did not resonate with the term "spiritual care," all described how the hospital's hospitality could affirm their values and strengthen coping. The phrase "spiritual care and hospitality" may optimally articulate and guide care in similar, pluralist inpatient palliative care contexts, recognizing that such care encompasses an interplay of generalist and specialist pastoral care staff and organizational and environmental qualities.

Keywords: Palliative care; caregivers; hospitality; patients; spiritual care; spirituality.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adaptation, Psychological
Aged
Aged, 80 and over
Australia
Caregivers
Christianity
Cohort Studies
Female
Health Knowledge, Attitudes, Practice
Humans
Male
Middle Aged
Patients
Qualitative Research
Religion
Spiritual Therapies*
Spirituality*
Terminal Care