Psychometric properties and validation of the Malawian Cerebral Palsy Quality of Life-child (CP QoL-Child) questionnaire for primary caregivers

Psychometric properties and validation of the Malawian Cerebral Palsy Quality of Life-child (CP QoL-Child) questionnaire for primary caregivers

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Bente van der Meijden1,2, Alinafe Chisulanda Kusate3, Alpheus Njewa3, Wieger Voskuijl2

1 Amsterdam UMC, location University of Amsterdam, Amsterdam Institute for Global Child Health, Emma Children’s hospital, Meibergdreef 9, Amsterdam, the Netherlands

  1. Kamuzu University of Health Sciences, Blantyre, Malawi
  2. Mangochi District Hospital, Mangochi, Malawi
  • Corresponding Author:Bente van der Meijden; E-mail: bente.van.der.meijden@gmail.com

Abstract
Background
Cerebral palsy (CP) is the leading cause of childhood disability worldwide, with a significantly higher burden in low- and middle-income countries (LMIC). In Malawi, children with CP often face limited access to rehabilitation services, social exclusion, and poor health outcomes, all of which negatively affect their quality of life (QoL). Although the CP QoL-Child is a validated instrument for assessing QoL in children with CP, no culturally adapted or translated version existed for Malawi.
Aim
This study aimed to translate, culturally adapt, and validate the CP QoL-Child primary caregiver version into Chichewa for use in Malawi.
Methods
This cross-sectional study involved 62 caregivers of children with CP in Malawi. The CP QoL-Child for Primary Caregivers was translated into Chichewa following standard guidelines. Internal consistency was assessed with Cronbach’s alpha and test–retest reliability with intraclass correlation (ICC). ANOVA was used to explore associations with GMFCS levels.
Results
The Chichewa CP QoL-Child showed excellent internal consistency (α = 0.96 overall; domain α = 0.65–0.96). Test–retest reliability was strong, with ICCs ranging from 0.84 to 0.96. The Access to Services domain had the lowest internal consistency (α = 0.65), while the highest temporal stability was found in Feelings about Functioning and Emotional Well-being (ICC = 0.96).
Conclusion
The Chichewa version of the CP QoL-Child for Primary Caregivers shows strong reliability and offers a valuable tool for understanding and improving the quality of life of children with CP in Malawi, with potential to inform interventions and policy.

Keywords (1-7): cerebral palsy, CP QoL-Child, quality of life, Health-Related Quality Of Life, disability, Malawi

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