Pauline Samia , Melissa Tirkha , Amina-Inaara Kassam , Richard Muindi , Wahu Gitaka , Susan Wamithi , James Orwa , Eugene Were , Michael Shevell
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The median age of study participants was 8 years (IQR 3–13 years), with males being the majority (57.02 %). Parent proxy-reports using CPQoL-child scale were obtained for <em>n</em> = 93 and CPQoL-adolescents for <em>n</em> = 21 respondents. Parents in both groups reported low domain QoL scores pertaining to function, family health and rehabilitation service accessibility.</p></div><div><h3>Interpretation</h3><p>Stigma, accessibility to services, therapies and schooling, particularly for children with severe functional limitations, remains a concern. Caregivers would benefit from awareness campaigns of available supports and from local community respite programs. Where national support systems exist, there are critical inefficiencies in service delivery to target population.</p></div>","PeriodicalId":73173,"journal":{"name":"Global pediatrics","volume":"9 ","pages":"Article 100172"},"PeriodicalIF":0.0000,"publicationDate":"2024-04-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S266700972400040X/pdfft?md5=0b8694f132d35a40953f4121726d572a&pid=1-s2.0-S266700972400040X-main.pdf","citationCount":"0","resultStr":"{\"title\":\"Quality of life in a cohort of Kenyan children with cerebral palsy\",\"authors\":\"Pauline Samia , Melissa Tirkha , Amina-Inaara Kassam , Richard Muindi , Wahu Gitaka , Susan Wamithi , James Orwa , Eugene Were , Michael Shevell\",\"doi\":\"10.1016/j.gpeds.2024.100172\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div><h3>Aim</h3><p>The objective of the study was to evaluate the quality of life in Kenyan children (age 4–18 years) with cerebral palsy (CP).</p></div><div><h3>Methods</h3><p>A cross-sectional descriptive study was conducted. Children with CP were recruited from the pediatric clinics at the Aga Khan hospital Nairobi (AKUHN). Parent proxy-reports using CPQoL-child and CPQoL-adolescents were obtained. Clinical and demographic data were compiled from medical records and parent interviews. A Likert scale was utilized to determine QoL across several domains.</p></div><div><h3>Results</h3><p>One hundred and fourteen child–parent dyads with CP were recruited. The median age of study participants was 8 years (IQR 3–13 years), with males being the majority (57.02 %). Parent proxy-reports using CPQoL-child scale were obtained for <em>n</em> = 93 and CPQoL-adolescents for <em>n</em> = 21 respondents. Parents in both groups reported low domain QoL scores pertaining to function, family health and rehabilitation service accessibility.</p></div><div><h3>Interpretation</h3><p>Stigma, accessibility to services, therapies and schooling, particularly for children with severe functional limitations, remains a concern. Caregivers would benefit from awareness campaigns of available supports and from local community respite programs. 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引用次数: 0
摘要
研究旨在评估肯尼亚脑瘫儿童(4-18 岁)的生活质量。从内罗毕阿迦汗医院(AKUHN)的儿科诊所招募患有脑瘫的儿童。使用儿童 CPQoL 和青少年 CPQoL 获得了家长的代理报告。临床和人口统计学数据来自医疗记录和家长访谈。研究采用李克特量表确定多个领域的 QoL。研究参与者的年龄中位数为 8 岁(IQR 3-13 岁),男性占多数(57.02%)。使用 CPQoL-儿童量表获得了 n = 93 份家长代理报告,使用 CPQoL-青少年量表获得了 n = 21 份受访者报告。两组家长在功能、家庭健康和康复服务可及性方面的 QoL 均得分较低。如果能开展宣传活动,让人们了解可提供的支持,并实施当地的社区暂休计划,护理人员将从中受益。在国家支持系统存在的地方,为目标人群提供服务的效率严重低下。
Quality of life in a cohort of Kenyan children with cerebral palsy
Aim
The objective of the study was to evaluate the quality of life in Kenyan children (age 4–18 years) with cerebral palsy (CP).
Methods
A cross-sectional descriptive study was conducted. Children with CP were recruited from the pediatric clinics at the Aga Khan hospital Nairobi (AKUHN). Parent proxy-reports using CPQoL-child and CPQoL-adolescents were obtained. Clinical and demographic data were compiled from medical records and parent interviews. A Likert scale was utilized to determine QoL across several domains.
Results
One hundred and fourteen child–parent dyads with CP were recruited. The median age of study participants was 8 years (IQR 3–13 years), with males being the majority (57.02 %). Parent proxy-reports using CPQoL-child scale were obtained for n = 93 and CPQoL-adolescents for n = 21 respondents. Parents in both groups reported low domain QoL scores pertaining to function, family health and rehabilitation service accessibility.
Interpretation
Stigma, accessibility to services, therapies and schooling, particularly for children with severe functional limitations, remains a concern. Caregivers would benefit from awareness campaigns of available supports and from local community respite programs. Where national support systems exist, there are critical inefficiencies in service delivery to target population.