School of Psychology, Faculty of Health, Deakin University, Geelong, Victoria, Australia.
The Cairnmillar Institute, Hawthorn East, Victoria, Australia.
Child Care Health Dev. 2024 Nov;50(6):e13336. doi: 10.1111/cch.13336.
While theoretical models have established the bidirectional relationship between health and wellbeing of parents and children with chronic health conditions (CHCs), previous work has predominantly emphasised the impact of parent functioning on child outcomes. This study examines how quality of life (QoL) domains in children with CHCs are associated with unmet supportive care needs (SCN) of their parents and explores whether these associations vary by health condition.
Parents of children with congenital heart disease (CHD), type 1 diabetes (T1D) and cancer diagnosed before the age of 12 years and receiving treatment within the last 5 years were eligible. Parents recruited through charity organisations and social media platforms completed a secure, online survey via Qualtrics. The PedsQL examined child QoL across four dimensions: physical, emotional, social and school functioning. A 34-item survey assessed parents' unmet SCN in the previous month across six need domains (e.g., care and informational). Linear regressions examined associations between child QoL and unmet SCN domains and moderation analyses determined whether associations varied as a function of CHC.
The study included 186 parents (age range 25-56 years) of children diagnosed with various CHCs (52% CHD; 27% T1D, 21% cancer). The child's emotional functioning was inversely related to all unmet SCN domains, social functioning was inversely related to three domains (physical and social; support; financial), school functioning was inversely related to two domains (physical and social; care), and child's physical functioning was not associated with any SCN domains. Only the association between child school functioning and unmet care needs was significantly moderated by CHC type (p < 0.05).
Poorer emotional functioning in children with a CHC is a key factor in determining parents unmet SCN. Larger studies are required to replicate these findings and inform design of interventions addressing QoL and unmet SCN in families of children with common CHCs.
虽然理论模型已经确立了父母和患有慢性健康状况（CHC）的儿童的健康和幸福感之间的双向关系，但以前的工作主要强调了父母功能对儿童结果的影响。本研究考察了患有 CHC 的儿童的生活质量（QoL）领域如何与父母的未满足的支持性护理需求（SCN）相关，并探讨了这些关联是否因健康状况而异。
患有先天性心脏病（CHD）、1 型糖尿病（T1D）和癌症的 12 岁以下儿童，且在过去 5 年内接受治疗的儿童的父母符合条件。通过慈善组织和社交媒体平台招募的父母通过 Qualtrics 完成了一项安全的在线调查。PedsQL 从四个方面考察了儿童的 QoL：身体、情感、社会和学校功能。一项 34 项的调查评估了父母在过去一个月内未满足的六个需求领域的 SCN（例如，护理和信息）。线性回归分析了儿童 QoL 与未满足的 SCN 领域之间的关联，并进行了调节分析，以确定关联是否因 CHC 而异。
该研究纳入了 186 名患有各种 CHC（52%CHD；27%T1D，21%癌症）的儿童的父母（年龄在 25-56 岁之间）。孩子的情绪功能与所有未满足的 SCN 领域呈负相关，社会功能与三个领域（身体和社会；支持；财务）呈负相关，学校功能与两个领域（身体和社会；护理）呈负相关，孩子的身体功能与任何 SCN 领域均无关联。只有儿童学校功能与未满足的护理需求之间的关联因 CHC 类型而显著调节（p<0.05）。
患有 CHC 的儿童情绪功能较差是父母未满足的 SCN 的关键因素。需要进行更大规模的研究来复制这些发现，并为针对常见 CHC 儿童家庭的 QoL 和未满足的 SCN 设计干预措施提供信息。
