Exploring Factors Impacting Adequate Care Coordination Among Families Caring for Children With Special Health Care Needs (CHSCN)

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To ensure the right to health, families caring for children with special health care needs (CSHCN) must have care that is family centered and involves shared decision-making. Healthcare and public health providers familiar with the CSHCN can work with families to improve care coordination. Access to family centered care might can be mediated by context (urban versus rural) which can in turn impact the families' level of involvement to care coordination. Unfortunately, many providers lack appropriate training to meet the needs of these families. The purpose of this study was to examine associations between family centered care and family involvement in the decision-making process. The National Survey of Children with Special Health Care Needs (NS-CSHCN; 2009-2011) employed a national random-digit-dial sample whereby US households were screened for CSHCN needs aged 0-17 years, resulting in 40,242 eligible respondents. Chi square and logistic regression analyses were performed modeling the probability of family centered care based on shared decision-making. There were significant associations between shared decision making and family centered care in rural (X2 = 159.03, N = 5926, p < .0001) and urban areas (X2 = 819.56, N = 21,294, p < .0001). Families who were involved in shared decision-making were more likely to report receipt of care that centered on the family (adjusted odds ratio [OR] = 10.42, 95% confidence interval [CI] = 9.78, 11.08). The results support the need for disability-specific training among healthcare providers and the public health workforce to promote adequate care coordination between families and providers.


American Public Health Association Annual Meeting (APHA)


Denver, CO