Impact of Caring for Children with Special Health Care Needs on the Family: Rhode Island’s Experience
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Objectives: The impact of caring for children with special health care needs (CSHCN) on their families’ finances and employment was studied. Methods: Data from the 2001 National Survey of Children with Special Health Care Needs were used to measure financial and employment problems. The level of impact was examined by child’s age, gender, ethnicity, race, mother’s education, poverty status, and severity of the child’s condition. The association between core outcome measures and the level of family impact was determined after adjusting for potential confounding factors. Results: Financial or employment problems were more likely to occur among families with young children, with incomes below 200% poverty and with children whose condition usually/always affected their activities. Compared to families without these problems, impacted families were less likely to partner in decision making, be satisfied with services, receive comprehensive care in a medical home, have adequate health insurance, and feel service systems are organized for easy use. Conclusions: Many families of CSHCN face financial and employment problems and are less likely to have a medical home, adequate insurance, and access to health care services.
Key Wordschildren with special health care needs impact employment finances core outcomes Rhode Island
- 1.U.S. Department of Health and Human Services. Design and operation of the National Survey of Children with Special Health Care Needs, 2001. National Center for Health Statistics. Vital Health Stat 1 2003;(41):1–136. Available at: http://www.cdc.gov/nchs/data/series/sr-01/sr01_041.pdf.
- 9.Centers for Disease Control and Prevention, National Center for Health Statistics. Progress toward implementing community-based systems of services for children with special health care needs: Summary tables from the National Survey of Children with Special Health Care Needs, 2001. Hyattsville, MD: National Center for Health Statistics, 2003. Available at: www.cdc.gov/nchs/slaits.htm.Google Scholar
- 10.Strickland B, McPherson M, Weissman G, van Dyck PC, Huang ZJ, Newacheck P. Access to the medical home: Results of the National Survey of Children with Special Health Care Needs. Pediatrics 2004;113 (5):1485–1492.Google Scholar
- 11.Shah BV, Barnwell BG, Bieler GS. SUDAAN User’s Manual, Release 8.0. Research Triangle Park, NC: Research Triangle Institute, 2001.Google Scholar
- 12.Family Voices. The Family Partners Project: The Health Care Experiences of Families of Children with Special Health Care Needs; Family impacts: A fact sheet on findings. Available at http://www.familyvoices.org/YourVoiceCounts/family-impacts.html.
- 13.Fenton B, Stevens D, Okafor M. Systemic impact of CSHCN on their families. Abstract #88776, American Public Health Association. Accepted to present at APHA Annual Meeting, November, 2004. Available at: http://apha.confex.eom/apha/132am/techprogram/paper887776.htm.