Faculty of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland.
Inselspital, University Children's Hospital Bern, Bern, Switzerland.
Pediatr Blood Cancer. 2025 Jan;72(1):e31426. doi: 10.1002/pbc.31426. Epub 2024 Nov 6.
The death of a child has a tremendous impact on parents' lives. The experience of parents who have lost a child to cancer may differ from other bereavement experiences, including other childhood and adulthood causes of death, because of the uncertainty of the prognosis, the aggressive treatment, and the potential for regret about treatment decisions. Bereavement care remains scarce, and effective interventions to meet the diverse needs of parents have not been defined.
To provide insights on bereaved parents' experiences, their needs, and wishes of support following the loss of their child to cancer.
We conducted 18 qualitative, in-depth, semi-structured interviews with 23 bereaved parents (seven fathers, 16 mothers), and used reflexive thematic analysis to analyze the data.
Parents received both informal and professional support. Regarding informal support, parents expressed a high level of ambivalence rooted in grief illiteracy. Parents also recognized their own struggles to express what forms of informal support they would have liked to receive. Support provided by healthcare professionals, institutions, and organizations involved in the children's care or in bereavement was inconsistent due to personnel time constraints, interpersonal relationships, or disruptions due to the COVID-19 pandemic. These factors could result in parents not having access to certain forms of support or not receiving long-term support.
Improving grief literacy may strengthen informal support and make discussions of grief and death less taboo. Institutional policies, training, and networking may help to ensure that support provided by healthcare professionals, institutions, and organizations is less vulnerable to inconsistencies.
孩子的死亡对父母的生活产生了巨大的影响。失去因癌症去世的孩子的父母的经历可能与其他丧亲经历不同，包括其他儿童和成年期的死亡原因，因为预后不确定、治疗积极、以及对治疗决策可能感到遗憾。丧亲关怀仍然稀缺，尚未确定满足父母多样化需求的有效干预措施。
提供关于丧亲父母在失去癌症患儿后的经历、需求和支持意愿的见解。
我们对 23 名丧亲父母（7 名父亲，16 名母亲）进行了 18 次定性、深入、半结构化访谈，并使用反思性主题分析来分析数据。
父母既接受了非正式支持，也接受了专业支持。关于非正式支持，父母表达了一种深深的矛盾情绪，这种情绪源于对悲伤的不理解。父母也意识到自己在表达希望得到何种形式的非正式支持方面存在困难。由于人员时间限制、人际关系或 COVID-19 大流行造成的中断，参与儿童护理或丧亲之痛的医疗保健专业人员、机构和组织提供的支持不一致。这些因素可能导致父母无法获得某些形式的支持或无法获得长期支持。
提高悲伤知识水平可能会加强非正式支持，并使悲伤和死亡的讨论不再那么忌讳。机构政策、培训和网络可能有助于确保医疗保健专业人员、机构和组织提供的支持不受影响。
