Comparing impact on the family and insurance coverage in children with cerebral palsy and children with another special healthcare need

• Published in: Child : care, health & development Vol. 44; no. 3; pp. 370 - 377
• Main Authors: Schaible, B., Colquitt, G., Caciula, M. C., Carnes, A., Li, L., Moreau, N.
• Format: Journal Article
• Language: English
• Published: England Blackwell Publishing Ltd 01.05.2018
• Subjects: Adolescent; Caregiver burden; Caregivers; Caregiving; Caring; Cerebral Palsy; Cerebral Palsy - economics; Cerebral Palsy - epidemiology; Cerebral Palsy - rehabilitation; Child; Child Care - economics; child disability; Children & youth; Cost of Illness; coverage; Disability; Disabled Children - rehabilitation; Families & family life; Family; Family (Sociological Unit); family functioning; Female; Financing, Personal - statistics & numerical data; Health Care Surveys; Health Expenditures - statistics & numerical data; Health Expenditures - trends; Health insurance; Health Needs; health services; Health Services Accessibility - economics; Health Services Accessibility - statistics & numerical data; Health Services Needs and Demand - economics; Health Services Needs and Demand - statistics & numerical data; Health Services Research; Health status; Households; Humans; Insurance; Insurance coverage; Insurance Coverage - economics; Insurance Coverage - statistics & numerical data; Insurance, Health - economics; Insurance, Health - statistics & numerical data; Male; Marital Instability; Marital relations; Medical Assistance - statistics & numerical data; Mental health; National Surveys; Polls & surveys; Relatives; Severity; Special needs children; State Surveys; United States - epidemiology; Variables; Youth; United States; coverage; cerebral palsy; family functioning; health services; child disability
• ISSN: 0305-1862; 1365-2214
• DOI: 10.1111/cch.12547

Background Families and caregivers of children with special healthcare needs (CSHCN) often experience financial difficulties, have unmet physical and mental health needs, and are at increased risk of marital problems due to the stress caused by carrying for their child. Within the larger population of CHSCN, young people with cerebral palsy (CP) have more unmet needs due to the complexity and potential severity of the disability. The purpose of this study was to identify factors associated with differences in insurance coverage and impact on the family of children with CP and other CHSCN. Methods The data were taken from the National Survey of Children with Special Health Care Needs, which was designed to examine state‐ and national‐level estimates of CSHCN. Three variables examined differences in insurance coverage between those children diagnosed with CP versus all other CSHCN: insurance coverage for the previous year, current insurance coverage, and adequacy of insurance coverage. Four variables representing different indicators of family impact were used to assess differences between children with CP versus all other CSHCN: out‐of‐pocket expenses for healthcare, family financial burden, hours per week that family members spent caring for the child, and impact on family work life. Results The results of this study showed significant differences between households with a child with CP and a child with another health special need in terms of insurance coverage, indicating a tendency of children with CP to be insured the entire year. As for the impact on the family in households with children with CP versus other CSHCN, there were significant differences in all four variables that were analysed. Conclusions There is limited evidence highlighting differences between the impact of caring for a child with CP and caring for other CSHCN. Caring for a child with CP has a significant impact on the family, despite insurance coverage.