School of Nursing (L.C.), Fudan University, Shanghai, China.
Center for Clinical Epidemiology and Evidence-based Medicine (S.C.), Beijing Children's Hospital, Capital Medical University, National Center for Children's Health, Beijing, China.
J Pain Symptom Manage. 2024 Feb;67(2):167-172. doi: 10.1016/j.jpainsymman.2023.11.005. Epub 2023 Nov 14.
Spiritual care is an essential domain of pediatric palliative care. The current mainland China faces a lack of national guidance and a shortage of specialized personnel to provide spiritual care in a traditional developing country.
To identify spiritual care in pediatric palliative care services in mainland China from the perspective of healthcare professionals.
A qualitative descriptive interview study was conducted individually with 27 participants: 14 physicians, seven nurses, and six social workers. The data were analyzed using thematic analysis.
Participants described that the essence of spiritual support was provided "in every detail" throughout pediatric palliative care. Four major themes and eleven subthemes were identified. 1) Assessing spiritual needs: paying attention to different perspectives; considering religion, tradition, and culture; discovering spiritual needs behind other needs. 2) Facilitating spiritual exploration: being with the family; providing resources; guiding by providers' own faith; 3) Supporting connections: encouraging the building of personal bonds; facilitating the establishment of spiritual connections. 4) Relieving spiritual suffering: facilitating a family review of child's life; supporting building meaning in daily life; assisting in leaving a legacy for the child.
This study illustrated that current spiritual support, though not formally organized, is provided individually in pediatric palliative care services in mainland China. Strategies for a practice guide, education and training for professionals, and cultural building need to be rationally developed to strengthen and structure spiritual support integrated into pediatric palliative care.
精神关怀是儿科姑息治疗的重要领域。当前，中国大陆面临着缺乏国家指导和专业人员提供传统发展中国家精神关怀的问题。
从医护人员的角度了解中国大陆儿科姑息治疗服务中的精神关怀。
采用定性描述性访谈研究，对 27 名参与者（14 名医生、7 名护士和 6 名社会工作者）进行了单独访谈。采用主题分析法对数据进行分析。
参与者描述了精神支持的本质是在儿科姑息治疗的“每一个细节”中提供的。确定了四个主要主题和十一个子主题。1）评估精神需求：关注不同视角；考虑宗教、传统和文化；发现其他需求背后的精神需求。2）促进精神探索：陪伴家人；提供资源；以提供者自身信仰为指导；3）支持联系：鼓励建立个人联系；促进建立精神联系。4）缓解精神痛苦：促进家庭对孩子生活的回顾；支持在日常生活中建立意义；协助为孩子留下遗产。
本研究表明，目前的精神支持虽然没有正式组织，但在中国大陆的儿科姑息治疗服务中是单独提供的。需要合理制定实践指南、专业人员教育和培训以及文化建设策略，以加强和构建融入儿科姑息治疗的精神支持。
