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 , 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. 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.