1 Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK.
2 Cicely Saunders Institute, Department of Palliative Care, Policy & Rehabilitation, King's College London, London, UK.
Palliat Med. 2018 Jan;32(1):216-230. doi: 10.1177/0269216317734954. Epub 2017 Oct 12.
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.
To explore spiritual care needs, experiences, preferences and research priorities in an international sample of patients with life-limiting disease and family caregivers.
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.
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.
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.
精神困扰在晚期疾病中普遍存在，但往往被忽视，导致不必要的痛苦。目前用于指导姑息治疗中精神关怀实践的证据有限。
探索在患有生命终末期疾病的国际患者和家庭照护者样本中，精神关怀需求、经验、偏好和研究重点。
焦点小组研究。
设置/参与者：在南非、肯尼亚、韩国、美国、加拿大、英国、比利时、芬兰和波兰的 11 个地点分别进行了患者和照护者的焦点小组讨论。讨论内容被转录、翻译成英文，并进行了主题分析。
共有 74 名患者参与：中位年龄 62 岁；53 人患有癌症；48 人为女性。共有 71 名照护者参与：中位年龄 61 岁；56 人为女性。三分之二的参与者是基督教徒。描述了五个主题：患者和照护者的精神关注、对灵性及其在疾病中的作用的理解、对精神关怀的看法和经验、对精神关怀的偏好以及研究重点。参与者报告了广泛的精神关注，涵盖了存在、心理、宗教和社会领域。灵性支持应对，但也可能导致将疾病视为惩罚。参与者强调了工作人员在精神关怀方面的能力的必要性。据报道，精神关怀不足，主要是由于工作人员对精神关怀的重视不够和缺乏时间。患者的研究重点包括了解人际联系的质量并培养员工的这些技能。照护者的重点包括员工培训、评估、研究影响以及照护者的精神关怀需求。
为了满足患者和照护者的偏好，医疗保健提供者应该能够解决他们的精神关注。研究结果应该为以患者和照护者为中心的精神关怀提供、教育和研究提供信息。
