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Financial Burden for Families of Children with Special Health Care Needs

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Abstract

Objectives: We describe family finance-related burden experienced by families with children with special health care needs (CSHCN). The paper further seeks to describe correlates of family financial burden. Methods: We examined correlates of family finance-related burden using multivariate methods and the National Survey of CSHCN, a nationally representative cross-sectional survey of CSHCN. We also examined state-level correlations. Results: Fully 40% of families with CSHCN, or 3,746,000 families nation-wide, experience financial burden related to their child’s condition. Experiencing a finance-related problem is negatively associated with Maternal and Child Health Bureau (MCHB) indicators and positively associated with poor-child health status. States that better meet MCHB indicators generally have lower levels of family finance-related problems. Conclusions: Families with CSHCN have high levels of finance-related family problems. Development of appropriate systems of care appears to offer a mechanism for alleviating the financial burdens of these families.

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REFERENCES

  1. Newacheck PW, Budetti PP, Halfon N. Trends in activity-limiting chronic conditions among children. AJPH 1986;76:178–84.

    CAS  Google Scholar 

  2. Newacheck PW, Budetti PP, McManus P. Trends in childhood disability. AJPH 1984;74:232–6.

    CAS  Google Scholar 

  3. Perrin JM, Shayne MW, Bloom SR. Home and community care for chronically Ill children. New York: Oxford University Press, 1993.

    Google Scholar 

  4. Medicaid source book: Background data and analysis (A 1993 update). Washington: U.S. Government Printing Office, 1993.

  5. Thyen U, Kuhlthau K, Perrin JM. The effect of child health status on maternal employment. Pediatrics 1999;103:1235–42.

    Article  CAS  PubMed  Google Scholar 

  6. Hirst M. Young adults with disabilities: Health, employment and financial costs for family. Child care health and development 1985;11:291–307.

    CAS  Google Scholar 

  7. Breslau N, Salkever D, Staruch KS. Women’s labor force activity and responsibilities for disabled dependents: A study of families with disabled children. Journal of Health and Social Behavior 1982;23:169–83.

    CAS  PubMed  Google Scholar 

  8. Kuhlthau K, Perrin JM. Child health status and parental employment. Archives of pediatrics and adolescent medicine 2001;155:1346–50.

    CAS  PubMed  Google Scholar 

  9. Breslau N, Staruch KS, Mortimer EA. Psychological distress in mothers of disabled children. Am J Dis Child 1982;136:682–86.

    CAS  PubMed  Google Scholar 

  10. Breslau, N, Staruch, KS, Mortimer Jr, EA. Psychological distress in mother of disabled children. Archives of Pediatrics 1982;136(8).

  11. Miller AC, et al. Stress, appraisal, and coping in mothers of disabled and nondisabled children. J Pediatr Psychol 1992;17(5):587–605.

    CAS  PubMed  Google Scholar 

  12. Silver EJ, Westbrook LE, Stein, RE. Relationship of parental psychological distress to consequences of chronic health conditions in children. J Pediatrc Psychol 1998;23(1):5–15.

    CAS  Google Scholar 

  13. Dyson LL. Response to the presence of a child with disabilities: Parental stress and family functioning over time. Am J Mental Retard 1993;98(2):207–18.

    CAS  Google Scholar 

  14. Anderson JM, Elfert H. Managing chronic health conditions in the family: Women as caretakers. J Adv Nurs 1989;14:735–43.

    CAS  PubMed  Google Scholar 

  15. Thyen U, et al. Impact of long–term care of children assisted by technology on maternal health. J Dev Behav Pediatr 1998;19:273–82.

    CAS  PubMed  Google Scholar 

  16. Quint R, et al. Home care for ventilator-dependent children: Psychosocial impact on the family. Am J Dis Child 1990;144, 1238–41.

    CAS  PubMed  Google Scholar 

  17. Curran AL, et al. Time costs of caring for children with severe disabilities compared with caring for children without disabilities. Dev Med Child Neuro 2001;43:529–33.

    CAS  Google Scholar 

  18. Hwang W, et al. Out-of-pocket medical spending for care of chronic conditions. Health Aff 2001;20:267–78.

    Article  CAS  Google Scholar 

  19. Peter C. Paying to participate: Financial social and personal costs to parents of involvement in their children’s care in hospital. J Adv Nurs 1997;25:746–52.

    Article  PubMed  Google Scholar 

  20. The Health Care Experiences of Families of Children with Special Health Care Needs: Summary Report of Findings from a National Survey http://www.familyvoices.org/YourVoiceCounts/sum-rep-find.html accessed 3/15/04.

  21. Swensen AR, et al. Attention-deficit/hyperactivity disorder: Increased costs for patients and their families. J Am Acad Child Adolesc Psychiatry 2003;42:1415–23.

    Article  PubMed  Google Scholar 

  22. U.S. Department of Health and Human Services. Healthy People 2010: Understanding and Improving Health, 2nd edn. Washington DC: U.S. Government Printing Office, November 2000.

    Google Scholar 

  23. Achieving and measuring success: A national agenda for children with special health care needs. http://mchb.hrsa.gov/programs/specialneeds/measuresuccess.htm accessed 3/17/04.

  24. McPherson M, et al. A new definition of children with special health care needs. Pediatrics 1998;102:137–40.

    Article  CAS  PubMed  Google Scholar 

  25. Bethell CD, et al. Identifying children with special health care needs: development and evaluation of a short screening instrument. Ambulat Pediatr 2002;2:38–48.

    Article  Google Scholar 

  26. Blumberg SJ, et al. Design and operation of the National survey of children with special health care needs., 2001 National Center for Health Statistics. Vital Health Stat 2004;1(41).

  27. “GCT-P14. Income and poverty in 1999: 2000. Census 2000 summary File 3 (SF 3) Sample Data. United States—State; and Puerto Rico.” Ame FactFinder 2000. Bureau of the Census. Retrieved January 15, 2004. http://factfinder.census.gov.

  28. Progress Toward implementing community-based systems of services for CSHCN: Summary tables from the national survey of children with special health care needs, 2001 DHHS April 28 2003 http://www.cdc.gov/nchs/data/slaits/CSHCN%20Progress%20Tables1.pdf accessed March 17, 2004.

  29. SUDAAN software for the statistical analysis of correlated data. [computer program]. Version 8.0.1. Research Triangle Park, NC; Research Triangle Institute;2001.

  30. Schafer JL. Analysis of incomplete multivariate data, London, UK: Chapman & Hall 1997.

    Google Scholar 

  31. Rubin DB. Multiple imputation after 18+ years. J Ame Stat Associ, 1996;91:473—89.

    Google Scholar 

  32. Yucel RM, Schafer JL. Computational strategies for multivariate linear mixed-effects models with missing values, 2002;11:437–57.

  33. U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. The national survey of children with special health care needs chartbook 2001. Rockville, Maryland: US Department of Health and Human Services, 2004.

    Google Scholar 

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Authors and Affiliations

  1. Center for Child and Adolescent Health Policy, Massachusetts General Hospital, Boston, Massachusetts

    Karen Kuhlthau PhD, Kristen Smith Hill MPH, Recai Yucel PhD & James M Perrin MD

  2. Center for Child and Adolescent Health Policy, Massachusetts General Hospital, 50 Stanford Street, Suite 901, Boston, Massachusetts, 02114

    Karen Kuhlthau PhD

Authors
  1. Karen Kuhlthau PhD
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  2. Kristen Smith Hill MPH
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  3. Recai Yucel PhD
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  4. James M Perrin MD
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Correspondence to Karen Kuhlthau PhD.

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Kuhlthau, K., Hill, K.S., Yucel, R. et al. Financial Burden for Families of Children with Special Health Care Needs. Matern Child Health J 9, 207–218 (2005). https://doi.org/10.1007/s10995-005-4870-x

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  • DOI: https://doi.org/10.1007/s10995-005-4870-x

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