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Delayed and Forgone Care for Children with Special Health Care Needs in New York State

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Abstract

Objective: To identify characteristics associated with delayed/forgone care for children with special health care needs (CSHCN) in New York State (NYS) as reported by their parents. Methods: Data come from NYS participants in the 2000–2002 National Survey of Children with Special Health Care Needs. Data were analyzed using weighted bivariate and multivariate regression models. The dependent variable was report of delayed/forgone routine health care. Independent variables included illness characteristics, potential and actual access to care, and provider care characteristics. Results: In NYS, 8.4% reported delayed/forgone health care for their child. Parents of children with delayed/forgone care were more likely to report that their child was uninsured (adjusted odds ratio [aOR] 3.8, 95% confidence interval [CI] 1.3–11.8), had experienced interrupted health insurance (aOR 3.9, 95% CI 1.5–9.7), or their child’s insurance was not adequate for CSHCN (aOR 3.6, 95% CI 1.4–9.1). Further, these parents were more likely to report that providers never spend adequate time (aOR 6.3, 95% CI 1.2–34.4), provide sufficient information (aOR 8.0, 95% CI 2.5–25.0), act as partners in care (aOR 6.7, 95% CI 2.3–19.7), or display cultural sensitivity (aOR 5.4, 95% CI 1.2–24.3). Conclusions: An estimated 40,771 NYS CSHCN experience delayed/forgone routine health care. Their families report two noteworthy barriers: inadequate or discontinuous insurance coverage and poor communication with health-care providers. Access to care for CSHCN can be improved by increasing consistent comprehensive insurance coverage and increasing sensitivity in relationships between health care providers and families of CSHCN.

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Authors and Affiliations

  1. Behavioral and Mental Health Research Section, Joslin Diabetes Center and Harvard Medical School, Boston, Massachusetts

    Arlene Smaldone DNSc, CPNP

  2. Columbia University School of Nursing, New York, New York

    Judy Honig EdD, CPNP & Mary W. Byrne PhD, MPH, CPNP

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  1. Arlene Smaldone DNSc, CPNP
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  2. Judy Honig EdD, CPNP
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  3. Mary W. Byrne PhD, MPH, CPNP
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Correspondence to Arlene Smaldone DNSc, CPNP.

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Smaldone, A., Honig, J. & Byrne, M.W. Delayed and Forgone Care for Children with Special Health Care Needs in New York State. Matern Child Health J 9 (Suppl 2), S75–S86 (2005). https://doi.org/10.1007/s10995-005-3859-9

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  • DOI: https://doi.org/10.1007/s10995-005-3859-9

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