The impact of raising a child with a developmental or physical health condition in Ethiopia

IF 2.9 2区 医学 Q1 EDUCATION, SPECIAL Research in Developmental Disabilities Pub Date : 2024-03-15 DOI:10.1016/j.ridd.2024.104716
Anne de Leeuw , Wietske A. Ester , Mersha Kinfe , Fikirte Girma , Rehana Abdurahman , Tigist Zerihun , Atsede Teklehaimanot , Charlotte Hanlon , Hans W. Hoek , Rosa A. Hoekstra
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Abstract

Objective

Raising a child with a developmental disability or physical health condition can have a major impact on the lives of their families, especially in low-income countries. We explored the impact on such families in Ethiopia.

Study design

A total of 241 child-caregiver dyads were recruited from two public hospitals in Addis Ababa, Ethiopia. Of these, 139 children were diagnosed with a developmental disability (e.g. autism, intellectual disability) and 102 children with a physical health condition (e.g. malnutrition, severe HIV infection). The family quality of life was assessed using caregiver reports on the Pediatric Quality of Life Inventory™ (PedsQL-FIM™). The disability weight score, which is a Global Burden of Disease measure to quantify health loss, was estimated for each child.

Results

Families with a child with a developmental disability reported lower quality of life than families caring for a child with a physical health condition (p < .001). Mean disability weight scores in children with a developmental disability were higher than in children with a physical health condition (p < .001), indicating more severe health loss. Disability weight scores were negatively associated with the family quality of life in the whole group (B=−16.8, SE=7.5, p = .026), but not in the stratified analyses.

Conclusions

Caring for a child with a developmental disability in Ethiopia is associated with a substantial reduction in the family quality of life. Scaling up support for these children in resource-limited contexts should be prioritized.

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在埃塞俄比亚抚养有发育或身体健康问题的儿童的影响
目标养育有发育障碍或身体健康问题的儿童会对其家庭的生活产生重大影响,尤其是在低收入国家。研究设计我们从埃塞俄比亚亚的斯亚贝巴的两家公立医院共招募了 241 对儿童和照顾者组合。其中,139 名儿童被诊断为发育障碍(如自闭症、智力障碍),102 名儿童被诊断为身体健康问题(如营养不良、严重艾滋病感染)。家庭生活质量的评估采用了儿科生活质量量表™(PedsQL-FIM™)的护理报告。结果与照顾身体健康儿童的家庭相比,有发育障碍儿童的家庭报告的生活质量较低(p <.001)。发育障碍儿童的平均残疾体重得分高于身体健康儿童(p <.001),表明其健康损失更为严重。在整个群体中,残疾体重得分与家庭生活质量呈负相关(B=-16.8,SE=7.5,p=.026),但在分层分析中则不然。在资源有限的情况下,应优先扩大对这些儿童的支持。
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来源期刊
CiteScore
5.50
自引率
6.50%
发文量
178
期刊介绍: Research In Developmental Disabilities is aimed at publishing original research of an interdisciplinary nature that has a direct bearing on the remediation of problems associated with developmental disabilities. Manuscripts will be solicited throughout the world. Articles will be primarily empirical studies, although an occasional position paper or review will be accepted. The aim of the journal will be to publish articles on all aspects of research with the developmentally disabled, with any methodologically sound approach being acceptable.
期刊最新文献
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