Physical caregiving for parents of children with cerebral palsy: how it changes over time for parents in the United States and how it can be measured for parents in Saudi Arabia?

Mohammed S. Alghamdi

doi:10.17918/3as7-gt90

Background and Purposes: Physical caregiving refers to the parental provision of physical assistance to support children's performance of mobility and self-care activities. Research has globally identified a wide range of challenges associated with caregiving for children with cerebral palsy (CP), including difficulties in physical caregiving. The aims of this research were to 1) determine longitudinal changes in physical caregiving for parents of children with CP in the United States over a two-year period based on children's gross motor function level and age; and 2) establish cross-cultural equivalence and reliability of the Arabic version of Self-Care Domain of Child Engagement in Daily Life (CEDL) and the Ease of Caregiving for Children for parents of children with CP in Saudi Arabia. Methods: For aim 1, a total of 153 parents of children with CP rated their physical caregiving using the Ease of Caregiving for Children three times over two years. Parents and therapists classified children's gross motor function using the Gross Motor Function Classification System (GMFCS). Physical caregiving was compared at three test times among parents of children grouped by GMFCS level (I, II-III, and IV-V) and age (1.7-5.9 and 6-11 years) using a three-way mixed ANOVA. For aim 2, a total of 36 children with cerebral palsy (aged 1.5 to 11 years) and their parents participated in the pilot and reliability testing of the measures. A committee of 7 stakeholders evaluated cross-cultural equivalence of both measures. Cronbach's alpha, intra-class correlation coefficient, and minimal detectable change were used to establish internal consistency, test-retest reliability, and distribution-based index, respectively. Results: For aim 1, among all analyses, a two-way interaction was found between children's GMFCS level and test time on ease of caregiving, p < 0.01. Change over two-year period was found for parents of children in level I and II-III, p < 0.01, but not parents of children in levels IV-V. At each test time, parents of children in level I reported the greatest ease of caregiving followed by parents of children in levels II-III, and levels IV-V, who reported the lowest ease of caregiving, p < 0.001. Among all analyses, there was no main effect of children's age on ease of caregiving, p > 0.05. For aim 2, minor linguistic, not cultural, adaptations were made in both Arabic versions of the measures. Conceptual, item, semantic, and operational types of equivalences were supported. The Arabic versions of Self-Care Domain of CEDL and Ease of Caregiving for Children demonstrated high internal consistency (0.97 and 0.91, respectively), excellent test-retest reliability (0.99 and 0.96, respectively), and appropriate minimal detectable change values (0.29, 0.43, respectively). Conclusion: Physical caregiving is a global construct because parents help their children to fulfill activities of daily living regardless of their geographical location, language, or culture. The collective findings of this research support evaluating and monitoring physical caregiving especially for parents of children with significant motor limitations given their physical caregiving did not become easier over time. Service providers are encouraged to use culturally appropriate standardized measures to evaluate parental physical caregiving and children's self-care performance.

Physical caregiving for parents of children with cerebral palsy: how it changes over time for parents in the United States and how it can be measured for parents in Saudi Arabia?

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Physical caregiving for parents of children with cerebral palsy: how it changes over time for parents in the United States and how it can be measured for parents in Saudi Arabia?

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