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Patients’ and caregivers’ needs, experiences, preferences and research priorities in spiritual care: A focus group study across nine countries

Research output: Contribution to journalArticle

Lucy Ellen Selman, Lisa Jane Brighton, Shane Sinclair, Ikali Karvinen, Richard Egan, Peter Speck, Richard A Powell, Ewa Deskur-Smielecka, Myra Glajchen, Shelly Adler, Christina Puchalski, Joy Hunter, Nancy Gikaara, Jonathon Hope, the InSpirit Collaborative

Original languageEnglish
Pages (from-to)216-230
Number of pages15
JournalPalliative Medicine
Volume32
Issue number1
Early online date12 Oct 2017
DOIs
E-pub ahead of print12 Oct 2017
Published1 Jan 2018

Bibliographical note

doi: 10.1177/0269216317734954

King's Authors

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, the United States, Canada, the United Kingdom, Belgium, Finland and Poland. Discussions were transcribed, translated into English and analysed thematically.Results:A total of 74 patients participated: median age 62 years; 53 had cancer; 48 were women. In total, 71 caregivers participated: median age 61 years; 56 were 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, and 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.Conclusion: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.

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