Caring for a Child With Cerebral Palsy: Cross-Sectional Study

Abstract Background Caregivers of children with cerebral palsy (CP) encounter unique challenges that are not common in typical families. The distress of these families starts in the diagnosis period, which is marked by a “wait and see” approach, and continues because of the lack of a clear prognosis. Objective This study aimed to identify the level of perceived ease of care faced by families of children with CP in Kuwait and its effect on their satisfaction with daily activities. Methods This cross-sectional study recruited caregivers of children with CP aged 5 to 16 years. The Ease of Caregiving for Children (ECC) scale, the self-care domain of the Child Engagement in Daily Life Measure (CEDLM), and the Satisfaction with Daily Occupations (SDO) questionnaire were used. Results Fifty-three caregivers participated (mean age 39.77, SD 7.56 years; children’s mean age 8.04, SD 2.57 years; Gross Motor Function Classification System: level I, n=18; level II, n=10; level III, n=13; level IV, n=5; and level V, n=7). ECC score was significantly correlated with SDO score ( P =.03) and the participation score in the self-care scale of the CEDLM ( P =.001). Conclusions Challenges of caring for a child with CP are positively correlated with caregivers’ satisfaction with daily activities and the child’s self-care abilities. Regular check-ins with caregivers and the establishment of support groups for caregivers would help with providing help sooner. Qualitative assessment is needed to explore these challenges in this region.