Department of Pediatrics, Kaohsiung Chang Gung Memorial Hospital, Kaohsiung, Taiwan.
School of Nursing, Kaohsiung Medical University, Kaohsiung, Taiwan.
Eur J Cancer Care (Engl). 2019 Jul;28(4):e13061. doi: 10.1111/ecc.13061. Epub 2019 Apr 24.
The study was to describe the essence of the lived experience of parents with a child with incurable cancer at the end of life (EOL). A descriptive phenomenological study was conducted with ten parents of children with incurable cancer in a medical centre in Taiwan. Data were collected from in-depth interviews and were analysed according to the method of Giorgi. Two major themes emerged: (a) immersion in the struggling and suffering, which included conflicts and arguments, witnessing their child suffering, denying their child being at EOL and waiting for a miracle; and (b) acceptance of death, which included an end to suffering, living in the moment, discussion of death and letting go. Parents had difficulty adapting to a palliative care perspective due to their misconception that this meant giving up on their child. In addition, religion and belief played varied and important roles in the lived experience of these parents with a child with incurable cancer. Healthcare providers must address the core value of palliative care and help parents accept the reality of their child's situation at an earlier stage in order to provide a better quality of life for the child.
本研究旨在描述生命末期(EOL)患有绝症的儿童的父母的生活体验的本质。在台湾的一家医疗中心,对十名患有绝症的儿童的父母进行了描述性现象学研究。数据来自深度访谈,并根据 Giorgi 的方法进行分析。出现了两个主要主题:(a)沉浸在挣扎和痛苦中,包括冲突和争论、目睹孩子受苦、否认孩子处于 EOL 并等待奇迹;以及(b)接受死亡,包括痛苦的终结、活在当下、讨论死亡和放手。父母由于误解姑息治疗意味着放弃孩子,因此难以适应姑息治疗的观点。此外,宗教和信仰在这些患有绝症的儿童的父母的生活体验中扮演了不同且重要的角色。医疗保健提供者必须解决姑息治疗的核心价值,并帮助父母在更早的阶段接受孩子的情况现实,以便为孩子提供更好的生活质量。