Impact of social support for mothers as caregivers of cerebral palsy children in Japan

Abstract

Purpose: Social supports are critical to alleviate the psychological and physical burden of primary caregivers of children with disabilities. This study aims to (1) clarify how cerebral palsy in children affects caregiving burden of the mother, and (2) identify the social supports that can effectively reduce that burden.

Design and methods: This is a cross-sectional study in which mothers of children with cerebral palsy completed questionnaires and provided data regarding their child's condition, family support, social support usage, degree of satisfaction with supports, and caregiving burden.

Results: We analyzed responses from 1190 mothers. Support usage, particularly of home-visit nursing, home care, home-visit rehabilitation, and mobility support, was higher in severely burdened groups. However, the proportion of satisfaction with social support in groups with light or no burden were higher, particularly in home care, home-visit rehabilitation, training/treatment, and short stays. Mothers whose children have an intellectual disability and gross exercise ≥1 in addition to tube feeding or intravenous nutrition especially felt a strong sense of burden. The most effective measure in reducing mother's sense of burden was short stays.

Conclusions: Mothers with children who can move and have an intellectual disability felt more burden compared with mothers of bedridden children. The findings clarify that supports, such as home care and short stays, have a significant impact on reducing the mother's sense of burden.

Practice implications: Due to the large sample size, we believe that the results can inform efforts to increase social support for caregivers.

Keywords: Caregiver burden; Cerebral palsy; Severe motor and intellectual disability; Social support; Zarit caregiver burden scale.