Everyday household costs of raising a child with cerebral palsy

Abstract Background Caring for a child with a disability can be costly in terms of time and energy, and it is also associated with lower incomes and higher direct costs, such as costs for assistive technologies, transport, food, clothing and leisure activities. However, few studies that have focused on households’ everyday costs associated with raising a child with disability. This study is based on the capability approach. The economic costs of a child with cerebral palsy are defined as the economic costs associated with achieving the same capabilities, or functionings, as a child without cerebral palsy. The purpose of this study is to explore the needs and economic costs in households raising a child with cerebral palsy. The results are important to inform, plan and justify targeted policies and interventions. Methods Digital in-depth interviews with caregivers from 15 Norwegian households raising children with cerebral palsy (aged 4-17 years, GMFCS levels 1-5). 12 women, 2 men and a couple were interviewed two times (1-2 hours each). Results The caregivers who took part in the interviews described their demanding role and that they spend a lot of time organizing daily routines, activities, health services, assistive technologies and assistants. Many of them initially reported that they do not have many daily extra costs, but when discussing the different areas of consumption, it emerged that households have extra housing costs because they need to make adaptations, remodeling and maintenance to their homes. An adapted car, which requires service, insurance and fuel, is often used for transport. The washing machine runs regularly and towels, sheets and clothes need to be frequently changed. Sometimes they also end up buying food, clothes or toys that are not used. Conclusions Households caring for children with cerebral palsy have additional costs for several types of expenses, including especially high costs for housing and transportation. Key messages • Households raising a child with cerebral palsy have needs that generate additional costs. • The costs vary and it is important to cover a broad range of cost areas.