Sample: Caregivers (n = 37) of CSHCN participated. Ages ranged between 20 to 66 years (mean = 36 years). Most were women (92%) and Caucasian (65%) with at least 38% from rural communities. Most (89%) had at least high school education and were employed. Incomes ranged from < $10,000 (16%) to > $60,000 (11%). All families had medical insurance, primarily Medicaid (87%).

Method: Focus groups were conducted across Tennessee. Data saturation occurred in the third group. A fourth group was conducted to ensure adequate inclusion of rural participants. Groups were audiotaped and transcribed verbatim. An interdisciplinary team used NVIVO software to facilitate content analysis. After initial data synthesis, all participants were provided an opportunity to participate in a confirmatory process of the synthesis. Study participants received a grocery coupon and offered transportation and child care expenses.

Findings: Seven broad areas, each with specific issues and challenges, emerged from content analysis: Family support systems; Early intervention/school systems; Coordination of care; Lack of knowledge; Provider/family relationships; Parent roles; and Insurance systems. Caregivers specifically noted the critical roles nurses have in the care systems across community sectors.

Conclusions: Findings related to the health care system are consistent with other works. This study adds the multidimensional nature of caring for a CSHCN and the import of considering how families interface with multiple community sectors in order to meet needs.

Implications: This study raises many issues related to health policy, multi-sector tracking systems, and the development of family centered care systems.

Back to Family Health With Special Needs Children
Back to 15th International Nursing Research Congress
Sigma Theta Tau International
July 22-24, 2004