Abstract
Background: Spiritual distress is prevalent in advanced disease, but often neglected, resulting in unnecessary suffering. Evidence to inform spiritual care practices in palliative care is limited.
Aim: To explore spiritual care needs, experiences, preferences and research priorities in an international sample of patients with life-limiting disease and family caregivers.
Design: Focus group study.
Setting/participants: Separate patient and caregiver focus groups were conducted at 11 sites in South Africa, Kenya, South Korea, USA, Canada, UK, Belgium, Finland and Poland. Discussions were transcribed, translated into English and analysed thematically.
Results: Seventy-four patients participated: median age 62; 53 had cancer; 48 women. Seventy-one caregivers participated: median age 61; 56 women. Two thirds of participants were Christian. Five themes are described: patients’ and caregivers’ spiritual concerns; understanding of spirituality and its role in illness; views and experiences of spiritual care; preferences regarding spiritual care; research priorities. Participants reported wide-ranging spiritual concerns spanning existential, psychological, religious, and social domains. Spirituality supported coping, but could also result in framing illness as punishment. Participants emphasised the need for staff competence in spiritual care. Spiritual care was reportedly lacking, primarily due to staff members’ de-prioritisation and lack of time. Patients’ research priorities included understanding the qualities of human connectedness and fostering these skills in staff. Caregivers’ priorities included staff training, assessment, studying impact, and caregiver’s spiritual care needs.
Conclusions: To meet patient and caregiver preferences, healthcare providers should be able to address their spiritual concerns. Findings should inform patient- and caregiver-centred spiritual care provision, education and research.
Aim: To explore spiritual care needs, experiences, preferences and research priorities in an international sample of patients with life-limiting disease and family caregivers.
Design: Focus group study.
Setting/participants: Separate patient and caregiver focus groups were conducted at 11 sites in South Africa, Kenya, South Korea, USA, Canada, UK, Belgium, Finland and Poland. Discussions were transcribed, translated into English and analysed thematically.
Results: Seventy-four patients participated: median age 62; 53 had cancer; 48 women. Seventy-one caregivers participated: median age 61; 56 women. Two thirds of participants were Christian. Five themes are described: patients’ and caregivers’ spiritual concerns; understanding of spirituality and its role in illness; views and experiences of spiritual care; preferences regarding spiritual care; research priorities. Participants reported wide-ranging spiritual concerns spanning existential, psychological, religious, and social domains. Spirituality supported coping, but could also result in framing illness as punishment. Participants emphasised the need for staff competence in spiritual care. Spiritual care was reportedly lacking, primarily due to staff members’ de-prioritisation and lack of time. Patients’ research priorities included understanding the qualities of human connectedness and fostering these skills in staff. Caregivers’ priorities included staff training, assessment, studying impact, and caregiver’s spiritual care needs.
Conclusions: To meet patient and caregiver preferences, healthcare providers should be able to address their spiritual concerns. Findings should inform patient- and caregiver-centred spiritual care provision, education and research.
| Original language | English |
|---|---|
| Pages (from-to) | 216-230 |
| Number of pages | 15 |
| Journal | Journal of Palliative Medicine |
| Volume | 32 |
| Issue number | 1 |
| Early online date | 12 Oct 2017 |
| DOIs | |
| Publication status | Published - Jan 2018 |
Research Groups and Themes
- Palliative and End of Life Care
Keywords
- Spirituality
- Pastoral Care
- Palliative Care
- Religion and Psychology
- Focus Groups
- Qualitative Research
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This is the final published version of the article (version of record). It first appeared online via Sage at http://journals.sagepub.com/doi/10.1177/0269216317734954 . Please refer to any applicable terms of use of the publisher.
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