Global Pediatrics (Sep 2024)

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

Journal volume & issue
Vol. 9
p. 100172

Abstract

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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.

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