An Examination of Caregiver Frustration Among Families Caring for Children with Special Health Care Needs (CSHCN)

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Children with special health care needs (CSHCN) require access to healthcare providers with additional expertise. Context can affect access to services. While barriers to access have been explored, some outcomes related to urban and rural families' experiences with care for CSHCN remain unknown. The purpose of this study was to examine associations between shared decision-making, care coordination, and caregiver frustration. We examined data from the latest version of the National Survey of Children with Special Health Care Needs (NS-CSHCN). The NS-CSHCN utilized a random sample of US households of CSHCN aged 0-17 years, resulting in 40,242 participants. Chi square and logistic regression analyses examined frustration among rural and urban respondents. Both rural (X2 = 159.03, N =5973, p < .0001) and urban (X2 = 819.56, N = 21492, p < .0001) families who did not meet the criteria for decision-making were more likely to experience frustration. The odds of frustration were the same in both contexts (OR = 0.26, CI = 0.24, 0.29). Frustration was also more likely when families experienced a lack of coordinated care in both rural and urban areas (X2 = 180.79, N = 5849, p < .0001; X2 = 943.53, N = 20988, p < .0001). Rural families were less likely to be frustrated when care was not coordinated (OR = 0.21, CI = 0.16, 0.27) than urban families (OR = 0.12, CI, 0.11, 0.15). Healthcare partnerships between families and providers are vital when meeting the needs of these families regardless of context.


American Public Health Association Annual Meeting (APHA)


Denver, CO