Arasu Sakthi, Shanbhag Deepthi
Department of Community Health, St John's Medical College, Bangalore, Karnataka, India.
J Family Med Prim Care. 2021 Aug;10(8):2804-2809. doi: 10.4103/jfmpc.jfmpc_1911_20. Epub 2021 Aug 27.
The primary caregiver of a child with disability has to undergo a lot of difficulties in taking care of the child.
To assess the quality of life and burden of caregiving of primary caregivers of children with disability registered in a CBR services in rural Karnataka.
A cross-sectional study was done among 100 children with disability and their primary caregivers. Interview schedule including socio-demography, WHOQOL-BREF, ZBI and WHODAS was used.
Mean age of caregivers was 36.38 of which 97% were women and 82% were mothers of children with disability. Mean age of children was 11.43 years, 56% males and most common diagnosis was multiple disabilities (38%). Mean caregiver burden according to Zarit scale was 33.27 and mean burden scores were significantly different between the disability domains of the children. Mean quality of life (QOL) scores for each domain was 49.6 in physical, 60.47 in psychological, 45.67 in social and 58.44 in environmental domains. Marital status of the caregivers was significantly associated with both physical and the social domain of the QOL. Occupation of the caregiver was significantly associated with the environmental domain and the type of disability in the children significantly affected the physical domain of the QOL of the caregivers.
Caregiver QOL is overall poor but it was the lowest in the physical domain and higher in psychological domain. Caregiver burden scores were high and depends on the type of disability. Importance should be given to the care of the caregivers.
残疾儿童的主要照料者在照顾孩子时会面临诸多困难。
评估在卡纳塔克邦农村地区社区康复服务中登记的残疾儿童主要照料者的生活质量和照料负担。
对100名残疾儿童及其主要照料者进行了一项横断面研究。使用了包括社会人口统计学、世界卫生组织生活质量简表(WHOQOL - BREF)、照料负担量表(ZBI)和世界卫生组织残疾评定量表(WHODAS)在内的访谈问卷。
照料者的平均年龄为36.38岁,其中97%为女性,82%是残疾儿童的母亲。儿童的平均年龄为11.43岁,56%为男性,最常见的诊断是多重残疾(38%)。根据扎里特量表,照料者的平均负担为33.27,且儿童不同残疾领域的平均负担得分存在显著差异。生活质量(QOL)各领域的平均得分分别为:身体领域49.6、心理领域60.47、社会领域45.67、环境领域58.44。照料者的婚姻状况与生活质量的身体和社会领域均显著相关。照料者的职业与环境领域显著相关,儿童的残疾类型显著影响照料者生活质量的身体领域。
照料者的生活质量总体较差,但在身体领域最差,在心理领域相对较高。照料者的负担得分较高,且取决于残疾类型。应重视对照料者的关怀。