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

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. Discu... Mehr ...

Verfasser: Selman, Lucy Ellen
Brighton, Lisa Jane
Sinclair, Shane
Karvinen, Ikali
Egan, Richard
Speck, Peter
Powell, Richard A
Deskur-Smielecka, Ewa
Glajchen, Myra
Adler, Shelly
Puchalski, Christina
Hunter, Joy
Gikaara, Nancy
Hope, Jonathon
Collaborative, the InSpirit
Dokumenttyp: Artikel
Erscheinungsdatum: 2018
Reihe/Periodikum: Palliative Medicine, vol 32, iss 1
Verlag/Hrsg.: eScholarship
University of California
Schlagwörter: Health Services and Systems / Nursing / Health Sciences / Clinical Research / Behavioral and Social Science / Basic Behavioral and Social Science / 7.1 Individual care needs / Management of diseases and conditions / Good Health and Well Being / Adaptation / Psychological / Adult / Aged / 80 and over / Belgium / Canada / Caregivers / Female / Finland / Focus Groups / Humans / Kenya / Male / Middle Aged / Neoplasms / Palliative Care / Poland / Quality of Life / Republic of Korea / South Africa / Spirituality / Stress / Terminally Ill / United Kingdom / United States / pastoral care / religion and psychology / qualitative research / InSpirit Collaborative / Public Health and Health Services / Other Medical and Health Sciences / Gerontology
Sprache: unknown
Permalink: https://search.fid-benelux.de/Record/base-28932505
Datenquelle: BASE; Originalkatalog
Powered By: BASE
Link(s) : https://escholarship.org/uc/item/91d3c7vb

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.