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Journal of Family Nursing
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Crossing Community Sectors: Challenges Faced by Families of Children With Special Health Care Needs

Melanie Lutenbacher, Ph.D., A.P.R.N., B.C.

Vanderbilt University School of Nursing, melanie.lutenbacher{at}vanderbilt.edu

Sharon Karp, M.S.N., C.P.N.P.

Vanderbilt University School of Nursing

Gladys Ajero, M.D.

Vanderbilt University School of Medicine, Division of Pediatrics

Dara Howe, B.A.

Family Voices of Tennessee

Mamie Williams, M.P.H., B.S.N., R.N.

Vanderbilt University School of Nursing

This article identifies unmet needs and challenges of 37 families caring for children with special health care needs (CSHCN). Data were collected in focus groups. Data saturation occurred in the third group. Another group was conducted to ensure adequate inclusion of rural participants. Mean age of participants was 36 years. Most participants were women (92%), Caucasian (65%), high school graduates (89%), and employed, with 38% from rural communities. All families had health care insurance, primarily Medicaid (87%). An interdisciplinary team used NVIVO software to facilitate content analysis. Seven areas emerged: family support systems, early intervention/school systems, coordination of care, lack of knowledge, provider/family relationships, parent roles, and insurance systems. Caregivers noted the critical role of nurses but a lack of nurse presence in community care systems. This study adds to the multidimensional nature of caring for CSHCN and highlights the importance of considering how families interface with multiple community sectors.

Key Words: families • special health care needs • service delivery • child health

Journal of Family Nursing, Vol. 11, No. 2, 162-182 (2005)
DOI: 10.1177/1074840705276132
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