Kondekar Alpana, Ansari Qudsiya, Ghatol Hrishikesh
Department of Pediatrics, TN Medical College and BYL Nair Hospital, Mumbai Central, Mumbai, Maharashtra, India.
J Family Med Prim Care. 2024 Oct;13(10):4457-4461. doi: 10.4103/jfmpc.jfmpc_223_24. Epub 2024 Oct 18.
Cerebral palsy (CP) is a heterogeneous group of disorder affecting the development of movement and posture, which is permanent nonprogressive. Previous studies in different regions have shown links between caregivers' mental health and children's well-being. However, the lack of such detailed research for the caretakers of children with CP and correlation of quality of life affected the type and severity of the condition; this necessitates the development of a new study to assess caregivers' quality of life.
Quality of life among caregivers of disabled children is an important concern in healthcare. We aim to evaluate the quality of life among caregivers of children with CP and to assess the factors affecting the caregivers' quality of life, namely, age, gender, type, and gross motor function in children with CP.
This was a cross-sectional observational study, conducted over a period of 6 months. It included the caregivers of children with CP at a tertiary care hospital of Mumbai. Data were collected using the WHO BREF questionnaire. The children were divided into two groups (2 to 7 years and 7 to 12 years). The qualities of life of the caretakers of these two groups were compared in four domains, namely, physical, psychological, social, and environmental.
The study included 50 participants. Mothers (80%) and fathers (10%) were the primary caregivers. Caretakers of the children with cerebral palsy showed significant affected quality of life as calculated from WHO QOL BREF score in both age groups (2-7 and 7-12 years) and in all domains. Overall, the most affected domain in our study was of psychological health and the least affected domain was of the environmental domain.
This study provides a snapshot of the impact of having a child with cerebral palsy on the lives of the caregivers Most of the caregivers in the study were mothers, and quality of life was affected in all domains mainly in psychological and physical domains. The study showed that there is a need for interventions in caregivers which can have an indirect impact on the children with CP.
脑瘫（CP）是一组影响运动和姿势发育的异质性疾病，具有永久性且非进行性的特点。此前在不同地区开展的研究表明，照料者的心理健康与儿童的幸福之间存在关联。然而，针对脑瘫患儿照料者的此类详细研究匮乏，且生活质量与病情类型及严重程度的相关性研究尚缺，这就需要开展一项新研究来评估照料者的生活质量。
残疾儿童照料者的生活质量是医疗保健领域的一个重要关注点。我们旨在评估脑瘫患儿照料者的生活质量，并评估影响照料者生活质量的因素，即脑瘫患儿的年龄、性别、类型和粗大运动功能。
这是一项为期6个月的横断面观察性研究。研究对象包括孟买一家三级护理医院中脑瘫患儿的照料者。使用世界卫生组织简版问卷收集数据。将患儿分为两组（2至7岁和7至12岁）。在身体、心理、社会和环境四个领域对比这两组患儿照料者的生活质量。
该研究纳入了50名参与者。主要照料者中母亲占80%，父亲占10%。根据世界卫生组织生活质量简版评分计算，两个年龄组（2至7岁和7至12岁）的脑瘫患儿照料者在所有领域的生活质量均受到显著影响。总体而言，本研究中受影响最大的领域是心理健康，受影响最小的领域是环境领域。
本研究呈现了脑瘫患儿对其照料者生活产生影响的概况。研究中的大多数照料者为母亲，生活质量在所有领域均受到影响，主要是心理和身体领域。研究表明，需要对照料者进行干预，这可能会对脑瘫患儿产生间接影响。
