Department of Psychology and Neuroscience, Dalhousie University, Halifax, Nova Scotia, Canada.
Center for Biobehavioral Health, The Abigail Wexner Research Institute at Nationwide Children's Hospital, Columbus, Ohio, USA.
J Pain Symptom Manage. 2021 Apr;61(4):705-712. doi: 10.1016/j.jpainsymman.2020.09.007. Epub 2020 Sep 12.
Caring for a child who will die from a life-limiting illness is one of the most difficult experiences a parent may face. Pediatric palliative care (PPC) has grown as a specialty service to address the unique needs of children and families with serious illness. However, gaps remain between the needs of families in PPC and the support received.
The objective of this study was to explore the concerns of parents who have a child in home-based PPC.
Semistructured interviews were conducted with 25 mothers and 10 fathers from 25 families shortly after their child's referral to home-based PPC. Children (57% male, M = 10.5 years, SD = 3.95, range = 4-18 years) had a range of diagnoses. Data were analyzed using inductive content analysis.
Parents' concerns clustered into four main themes: 1) ensuring that their child's remaining days were spent living well physically, emotionally, and socially; 2) uncertainty regarding their child's diagnosis, prognosis, and treatments; 3) their child's death (e.g., the process of dying and when it will occur); and 4) the family, including the impact of the child's illness and death on siblings and wanting to cherish as much time together with family as possible.
Parents of children receiving home-based PPC expressed concerns across a range of domains, both about their seriously ill child and the broader family. These results highlight salient worries among parents of children in PPC and point to critical areas for intervention for seriously ill children and the broader family.
照顾一个患有危及生命的疾病的孩子是父母可能面临的最困难的经历之一。儿科姑息治疗（PPC）作为一项专业服务不断发展，以满足患有严重疾病的儿童和家庭的特殊需求。然而，在 PPC 家庭的需求和所获得的支持之间仍然存在差距。
本研究的目的是探讨接受居家 PPC 的儿童的父母的关注点。
对 25 个家庭中的 25 位母亲和 10 位父亲进行了半结构化访谈，这些家庭的孩子在接受居家 PPC 转诊后不久。儿童（57%为男性，M=10.5 岁，SD=3.95，范围=4-18 岁）的诊断多种多样。使用归纳内容分析法分析数据。
父母的关注点分为四个主题：1）确保孩子在身体、情感和社交方面度过美好的剩余日子；2）对孩子的诊断、预后和治疗不确定；3）孩子的死亡（例如，死亡过程和何时发生）；4）家庭，包括孩子的疾病和死亡对兄弟姐妹的影响以及希望尽可能多地与家人一起珍惜时光。
接受居家 PPC 的儿童的父母表达了对其重病儿童和更广泛家庭的一系列领域的关注。这些结果突出了 PPC 儿童的父母的重要关注点，并指出了对重病儿童和更广泛家庭进行干预的关键领域。
