Kelly Daniel, Closs Mia, McAndrew Rachel, Smith Pam
School of Healthcare Sciences, Cardiff University, Cardiff, UK.
Usher Institute, University of Edinburgh, Edinburgh, UK.
J Adv Nurs. 2025 Mar;81(3):1423-1436. doi: 10.1111/jan.16323. Epub 2024 Jul 13.
The aim of this study was to explore factors that helped when a child with cancer transitioned to end of life care in a hospital setting.
Qualitative exploratory design using reflexive thematic analysis.
In-depth, semi-structured interviews were carried out with 7 sets of bereaved parents and 10 health professionals from one specialist paediatric oncology centre. Results were shared with professionals to help shape services in a new children's hospital.
Three themes were identified: 'change and facing the unknown', 'the comfort of feeling normal' and 'knowing and being known'. Bereaved parents described a gradual awareness of the deterioration of their child's condition and the need for trust in health professionals. Professionals described the process as challenging but were guided by the needs of children and parents. Supportive and trusting relationships with professionals helped parents to cope with the transition.
We identified practices that helped create a culture that supported parents and professionals involved in caring for children facing death from cancer. These were rooted in feeling supported and working to provide the best end of life care for children.
Given that the death of a child is a uniquely challenging event, this study indicates that the clinical setting can assist via the promotion of familiarity (supporting families over time) and normality (allowing family-focused activities). These were helpful to parents and to professionals. However, professionals need emotional support when working with these families.
The study adhered to the Consolidated Criteria for Reporting Qualitative Research.
The project steering group included one bereaved parent (who was not involved in the study), one consultant paediatric oncologist and one hospital chaplain.
本研究旨在探索在医院环境中，帮助患癌儿童过渡到临终关怀阶段的相关因素。
采用反思性主题分析的定性探索性设计。
对来自一家专业儿科肿瘤中心的7组丧亲父母和10名医护人员进行了深入的半结构化访谈。研究结果与专业人员分享，以帮助新儿童医院完善服务。
确定了三个主题：“变化与面对未知”、“感觉正常的慰藉”和“被了解与被认识”。丧亲父母描述了对孩子病情恶化的逐渐认识以及对医护人员的信任需求。专业人员表示这个过程具有挑战性，但以儿童和家长的需求为导向。与专业人员建立支持性和信任性的关系有助于家长应对这一转变。
我们确定了有助于营造一种文化的做法，这种文化支持参与照顾患癌濒死儿童的家长和专业人员。这些做法源于获得支持的感受以及努力为儿童提供最佳临终关怀。
鉴于儿童死亡是一个极具挑战性的特殊事件，本研究表明临床环境可通过增进熟悉度（长期支持家庭）和营造常态感（允许以家庭为中心的活动）提供帮助。这对家长和专业人员都有益。然而，专业人员在与这些家庭合作时需要情感支持。
本研究遵循了定性研究报告的统一标准。
项目指导小组包括一名丧亲父母（未参与研究）、一名儿科肿瘤顾问医生和一名医院牧师。
