Maternal and Child Health Journal

, Volume 14, Issue 2, pp 155–163 | Cite as

The Well-Being of Parental Caregivers of Children with Activity Limitations

  • Karen Kuhlthau
  • Robert Kahn
  • Kristen S. Hill
  • Sangeeth Gnanasekaran
  • Susan L. Ettner


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.


Caregiving Parent Disability Pediatric Health Activity limitation 


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Copyright information

© Springer Science+Business Media, LLC 2008

Authors and Affiliations

  • Karen Kuhlthau
    • 1
  • Robert Kahn
    • 2
  • Kristen S. Hill
    • 1
  • Sangeeth Gnanasekaran
    • 1
  • Susan L. Ettner
    • 3
  1. 1.Center for Child and Adolescent Health Policy, Massachusetts General HospitalBostonUSA
  2. 2.Cincinnati Children’s Hospital Medical CenterCincinnatiUSA
  3. 3.Division of General Internal Medicine and Health Services ResearchDavid Geffen School of Medicine at UCLALos AngelesUSA

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