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

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.

End of life in acute hospital setting—A systematic review of families' experience of spiritual care

“…Everything's being done for them but nobody's helping me. (Selman et al, 2017) Relatives expressed the wish to have someone to discuss existential questions with in the face of illness and death of a family member:…”

An EAPC white paper on multi-disciplinary education for spiritual care in palliative care

“…Engagement with spirituality enriches the lives of all involved; those who give and receive care, including children [26]. The level of unmet need in SC across Europe is not clear, and variable levels of provision are reported [15,27,28].…”

Family Caregiving in Serious Illness in the United States: Recommendations to Support an Invisible Workforce

“…Importantly, the health effects of caregiving may be amplified in serious illness due to requirements for more caregiving hours, greater likelihood of performing complex medical/nursing tasks, and, for many, involvement in the complex decision making associated with life‐limiting illness . Compared with their counterparts not engaged in the role, caregivers report less optimal physical and mental health status; higher levels of depression, stress, distress, and burden; and higher levels of spiritual distress . Social implications of family caregiving can include fewer visits to friends, less satisfaction with social supports and, for some, increased marital dissatisfaction .…”