• 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, and InSpirit Collaborative.
• 1 Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK.
• Palliat Med. 2018 Jan 1; 32 (1): 216-230.

BackgroundSpiritual distress is prevalent in advanced disease, but often neglected, resulting in unnecessary suffering. Evidence to inform spiritual care practices in palliative care is limited.AimTo explore spiritual care needs, experiences, preferences and research priorities in an international sample of patients with life-limiting disease and family caregivers.DesignFocus group study.Setting/ParticipantsSeparate 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.ResultsA 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.ConclusionTo 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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