title: The well-being of parental caregivers of children with activity limitations.
abstract: This paper describes well-being (health status/quality of life, healthcare utilization, employment, and financial status) of parental caregivers of children with activity limitations and compares their well-being to parental caregivers with children without activity limitations. Using Medical Expenditure Panel Survey data from 1996 to 2001, we examined the well-being of parents of children with and without an activity limitation. Children were considered as having an activity limitation if they reported a limitation in school, play or social activities. Analyses include weighted descriptive statistics and multivariable regressions. Seventy-five percentage of parents of children with activity limitations experienced at least one adverse outcome compared to 66% of parents of children without activity limitations. Parents of children with activity limitations exhibited poorer reported quality of life as indicated by lower SF-12 physical health scores (coefficient = -2.24 CI -3.38 to -1.11) and lower EuroQol scores (coefficient = -.07 CI -.10 to -.03). Parents of children with activity limitations have slightly higher utilization of sick visits. One measure of preventive care use was not significant and one showed a slight increase in use among parents of children with activity limitations. Employment and financial outcomes were less favorable for parents of children with activity limitations. Across a variety of domains, parental caregivers of children with activity limitations are at a disadvantage compared to other parents suggesting that public and private parental supports might be helpful.
authors.affiliation: Center for Child and Adolescent Health Policy, Massachusetts General Hospital, Boston, MA 02114, USA. kkuhlthau@partners.org
authors.forename: Karen
authors.initials: K
authors.lastname: Kuhlthau
authors.forename: Robert
authors.initials: R
authors.lastname: Kahn
authors.forename: Kristen S
authors.initials: KS
authors.lastname: Hill
authors.forename: Sangeeth
authors.initials: S
authors.lastname: Gnanasekaran
authors.forename: Susan L
authors.initials: SL
authors.lastname: Ettner
mesh_terms: D000328:Adult; D017028:Caregivers / Q000523:psychology*; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D019988:Children with Disabilities; D006801:Humans; D007407:Interviews as Topic; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D010549:Personal Satisfaction; D014481:United States; D055815:Young Adult