Quality of Life in Children With Chronic Health Conditions and Its Contribution to Unmet Supportive Care Needs of Families

IF 1.8 4区医学 Q2 PEDIATRICS Child Care Health and Development Pub Date : 2024-10-09 DOI:10.1111/cch.13336

Sangeetha Thomas, Nicholas P. Ryan, Linda K. Byrne, Christel Hendrieckx, Victoria White

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Abstract

Background

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.

Method

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.

Results

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).

Conclusion

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.

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慢性病患儿的生活质量及其对未满足家庭支持性护理需求的影响。

背景：虽然理论模型已经确立了父母与患有慢性疾病（CHC）儿童的健康和福祉之间的双向关系，但以往的工作主要强调父母的功能对儿童结果的影响。本研究探讨了慢性病患儿的生活质量（QoL）领域与其父母未满足的支持性护理需求（SCN）之间的关系，并探讨了这些关系是否因健康状况而异：先天性心脏病 (CHD)、1 型糖尿病 (T1D) 和癌症患儿的父母在 12 岁前确诊并在过去 5 年内接受过治疗。通过慈善组织和社交媒体平台招募的家长通过 Qualtrics 完成了一项安全的在线调查。PedsQL 从身体、情感、社交和学校功能四个方面考察了儿童的 QoL。一项由 34 个项目组成的调查评估了父母上个月在六个需求领域（如护理和信息）未得到满足的 SCN。线性回归分析了儿童 QoL 与未满足的 SCN 领域之间的关联，调节分析确定了关联是否随 CHC 的变化而变化：研究对象包括186名被诊断患有各种CHC（52%为慢性阻塞性肺病；27%为T1D，21%为癌症）的儿童的家长（年龄在25-56岁之间）。儿童的情绪功能与所有未满足的 SCN 领域成反比，社会功能与三个领域（身体和社会；支持；经济）成反比，学校功能与两个领域（身体和社会；护理）成反比，而儿童的身体功能与任何 SCN 领域均无关联。只有儿童的学校功能与未满足的护理需求之间的关系受到社区保健中心类型的显著调节（p 结论：儿童的学校功能与未满足的护理需求之间的关系受到社区保健中心类型的显著调节：CHC儿童较差的情绪功能是决定父母未满足SCN的关键因素。需要进行更大规模的研究来复制这些发现，并为设计干预措施提供信息，以解决常见 CHC 儿童家庭的 QoL 和未满足的 SCN 问题。

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来源期刊

Child Care Health and Development 医学-小儿科

CiteScore

3.40

自引率

5.30%

发文量

136

审稿时长

4-8 weeks

期刊介绍： Child: care, health and development is an international, peer-reviewed journal which publishes papers dealing with all aspects of the health and development of children and young people. We aim to attract quantitative and qualitative research papers relevant to people from all disciplines working in child health. We welcome studies which examine the effects of social and environmental factors on health and development as well as those dealing with clinical issues, the organization of services and health policy. We particularly encourage the submission of studies related to those who are disadvantaged by physical, developmental, emotional and social problems. The journal also aims to collate important research findings and to provide a forum for discussion of global child health issues.