Dunbar Helena, Carter Bernie, Brown Jayne
Leicester School of Nursing and Midwifery, De Montfort University, Leicester, UK.
Edge Hill University, Ormskirk, Lancashire, UK.
BMJ Support Palliat Care. 2020 Sep;10(3):e25. doi: 10.1136/bmjspcare-2018-001543. Epub 2018 Aug 14.
Limited knowledge exists of parents' perceptions and experiences of children's hospices and how these contribute to the varied access and uptake of services.
This study aimed to explore parents' perspectives and experiences of a hospice, to understand the barriers and/or facilitators to accessing a hospice, and what characteristics parents wanted from hospice provision.
A two-phase qualitative study underpinned by a constructivist grounded theory methodology was employed. Phase 1 used focus groups to collect data from parents of children already accessing the hospice (n=24). Phase 2 used in-depth semistructured interviews with parents of children who did not use the hospice (n=7) and with parents who had previous experience of using a hospice (n=7).
A grounded theory of place bonding was developed which illustrates the cognitive journey taken by parents of children with life-limiting conditions considering/receiving hospice care for their child.
Finding a place where they belonged and felt at 'home' made the decision to accept help in caring for their child with a life-limiting condition more acceptable. The theory of place bonding offers children's hospices a new perspective from which to view how parents access, accept and build relationships at the hospice.
关于父母对儿童临终关怀机构的看法和体验，以及这些看法和体验如何影响服务的不同获取和利用情况，目前了解有限。
本研究旨在探讨父母对临终关怀机构的看法和体验，了解获取临终关怀服务的障碍和/或促进因素，以及父母希望临终关怀服务具备哪些特征。
采用了一个基于建构主义扎根理论方法的两阶段定性研究。第一阶段使用焦点小组从已在使用临终关怀服务的儿童的父母中收集数据（n = 24）。第二阶段对未使用临终关怀服务的儿童的父母（n = 7）和曾有过使用临终关怀服务经历的父母（n = 7）进行深入的半结构化访谈。
形成了一个关于场所依恋的扎根理论，该理论阐述了患有危及生命疾病的儿童的父母在考虑/接受为其孩子提供临终关怀服务时所经历的认知过程。
找到一个他们归属且感觉像“家”的地方，使得他们更愿意接受帮助来照顾患有危及生命疾病的孩子。场所依恋理论为儿童临终关怀机构提供了一个新视角，用以审视父母如何获取、接受临终关怀服务以及在临终关怀机构建立关系。
