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

Lucy Selman, Lisa Brighton, Shane Sinclair, Ikali Karvinen, Richard Egan, Peter Speck, Richard Powell, Eva Deskur-Smielecka , Myra Glajchen, Shelley Adler, Christina Puchalski, Joy Hunter, Nancy Gikaara, Jonathon Hope

Research output: Contribution to journalArticle (Academic Journal)peer-review

55 Citations (Scopus)
367 Downloads (Pure)

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.
Original languageEnglish
Pages (from-to)216-230
Number of pages15
JournalJournal of Palliative Medicine
Volume32
Issue number1
Early online date12 Oct 2017
DOIs
Publication statusPublished - Jan 2018

Keywords

  • Spirituality
  • Pastoral Care
  • Palliative Care
  • Religion and Psychology
  • Focus Groups
  • Qualitative Research

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