Quality of life of families and siblings of children and adolescents with meningomyelocele

IF 1.8 4区医学 Q2 PEDIATRICS Child Care Health and Development Pub Date : 2024-03-14 DOI:10.1111/cch.13246

Bruno Leonardo Scofano Dias, Maura Calixto Cecherelli de Rodrigues, José Luiz Muniz Bandeira Duarte

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Abstract

Background

Children with meningomyelocele may require continuous care. Consequently, there is a risk for caregiver burden and impact on family quality of life (QoL), including siblings' QoL. Some studies analysed caregivers' burden and family QoL separately. However, none of these studies evaluated siblings' QoL and the associations between these three dimensions. This study investigated the associations between caregivers' burden, family QoL and siblings' QoL in Brazilian families of children with meningomyelocele and its correlations with sociodemographic, functional and clinical variables. Siblings' QoL was specifically assessed using as a parameter the QoL of typically developed Brazilian children.

Methods

One hundred and fifty families, 150 caregivers and 68 siblings completed the Family Quality of Life Scale, Burden Interview, KIDSCREEN-27 Child and Adolescent Version and Parents Version questionnaires.

Results

Most families and caregivers reported a high family QoL and a low caregiver burden. Family QoL was significantly lower as caregivers' burden increased. Caregiver's burden was significantly lower with increasing family QoL levels. Self-reported siblings' QoL was significantly worse than that of typically developed peers. There were no significant differences between self and parent-reported siblings' QoL. Self-reported siblings' QoL was significantly worse as their age increased and better with increasing family QoL levels. Parent-reported siblings' QoL was significantly worse with increasing levels of caregiver's burden and significantly better as family QoL increased. There were no significant associations with functional and clinical variables.

Conclusions

Despite the cross-sectional nature of the available data precludes any statements of causality, our results reinforce the relevance of knowing the factors that influence the QoL of families and siblings of children and adolescents with meningomyelocele and the relevance of actions aimed at reducing caregivers' burden, improving family QoL and meeting siblings' individual needs. Future multicenter studies may validate the generalizability of our findings.

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患有脑膜瘤的儿童和青少年的家人和兄弟姐妹的生活质量。

背景：脑膜瘤患儿可能需要持续护理。因此，护理人员的负担和家庭生活质量（QoL）可能会受到影响，包括兄弟姐妹的 QoL。一些研究对护理人员的负担和家庭生活质量分别进行了分析。然而，这些研究都没有评估兄弟姐妹的 QoL 以及这三个维度之间的关联。本研究调查了巴西脑膜瘤患儿家庭中照顾者负担、家庭 QoL 和兄弟姐妹 QoL 之间的关系，以及它们与社会人口学、功能和临床变量的相关性。具体评估兄弟姐妹的 QoL 时，将发育正常的巴西儿童的 QoL 作为参数：150个家庭、150名照顾者和68名兄弟姐妹完成了家庭生活质量量表、负担访谈、KIDSCREEN-27儿童和青少年版以及父母版问卷：结果：大多数家庭和照顾者都表示家庭生活质量较高，照顾者负担较轻。随着照护者负担的加重，家庭生活质量明显降低。随着家庭 QoL 水平的提高，照顾者的负担也明显减轻。自我报告的兄弟姐妹的 QoL 明显低于正常发育的同龄人。自我报告的兄弟姐妹的 QoL 与父母报告的兄弟姐妹的 QoL 之间没有明显差异。随着年龄的增长，自我报告的兄弟姐妹的 QoL 明显降低，而随着家庭 QoL 水平的提高，自我报告的兄弟姐妹的 QoL 则有所提高。父母报告的兄弟姐妹的 QoL 随着照顾者负担的增加而明显变差，随着家庭 QoL 的增加而明显变好。该研究与功能和临床变量无明显关联：尽管现有数据的横断面性质排除了任何因果关系的陈述，但我们的研究结果加强了了解影响脑膜瘤患儿和青少年的家庭和兄弟姐妹的 QoL 的因素的重要性，以及旨在减轻照顾者负担、改善家庭 QoL 和满足兄弟姐妹个人需求的行动的重要性。未来的多中心研究可能会验证我们研究结果的普遍性。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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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.