Quality of life in a cohort of Kenyan children with cerebral palsy

Pauline Samia , Melissa Tirkha , Amina-Inaara Kassam , Richard Muindi , Wahu Gitaka , Susan Wamithi , James Orwa , Eugene Were , Michael Shevell
{"title":"Quality of life in a cohort of Kenyan children with cerebral palsy","authors":"Pauline Samia ,&nbsp;Melissa Tirkha ,&nbsp;Amina-Inaara Kassam ,&nbsp;Richard Muindi ,&nbsp;Wahu Gitaka ,&nbsp;Susan Wamithi ,&nbsp;James Orwa ,&nbsp;Eugene Were ,&nbsp;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. 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":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Global pediatrics","FirstCategoryId":"1085","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S266700972400040X","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"","JCRName":"","Score":null,"Total":0}
引用次数: 0

Abstract

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.

肯尼亚一组脑瘫儿童的生活质量
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。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
求助全文
约1分钟内获得全文 求助全文
来源期刊
Global pediatrics
Global pediatrics Perinatology, Pediatrics and Child Health
自引率
0.00%
发文量
0
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
确定
请完成安全验证×
copy
已复制链接
快去分享给好友吧!
我知道了
右上角分享
点击右上角分享
0
联系我们:info@booksci.cn Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。 Copyright © 2023 布克学术 All rights reserved.
京ICP备2023020795号-1
ghs 京公网安备 11010802042870号
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术官方微信