title: Crossing community sectors: challenges faced by families of children with special health care needs.
abstract: 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.
authors.affiliation: School of Nursing-South, Vanderbilt University, Medical Center North AAA0208AAA, Nashville, TN 37240, USA. melanie.lutenbacher@vanderbilt.edu
authors.forename: Melanie
authors.initials: M
authors.lastname: Lutenbacher
authors.forename: Sharon
authors.initials: S
authors.lastname: Karp
authors.forename: Gladys
authors.initials: G
authors.lastname: Ajero
authors.forename: Dara
authors.initials: D
authors.lastname: Howe
authors.forename: Mamie
authors.initials: M
authors.lastname: Williams
mesh_terms: D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002662:Child Health Services / Q000458:organization & administration*; D019988:Children with Disabilities; D005260:Female; D017144:Focus Groups; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D009679:Nuclear Family / Q000523:psychology*; D013714:Tennessee