Hye-Jung Yun, Celia Tseyen Lee, Ming Cui, Cynthia B Wilson
BackgroundChildren with special healthcare needs (CSHCN) often require complex, ongoing, and coordinated care. Mothers frequently serve as primary caregivers and may experience elevated stress related to managing their child's medical needs and navigating healthcare systems. Healthcare experiences may shape how medical complexity relates to maternal stress.ObjectivesThis study examined maternal stress as the primary outcome in relation to children's medical complexity and healthcare experiences, including care coordination, family-centered care, and shared decision-making, while accounting for sociodemographic characteristics.DesignThis study used a cross-sectional design and secondary analysis of nationally representative survey data.MethodsData were drawn from the 2016-2020 National Survey of Children's Health (NSCH), including 18,190 mothers of CSHCN. Mothers provided information on their child's medical complexity, healthcare experiences, maternal stress, and sociodemographic characteristics, including child race/ethnicity, sex, age, family structure, number of children, federal poverty level, and community setting. Path analysis and bootstrapping were conducted in Mplus 8.8 to examine direct and indirect associations.ResultsHigher medical complexity in CSHCN was significantly associated with increased maternal stress. Significant indirect associations were observed through care coordination and family-centered care. Additionally, several sociodemographic factors were significantly associated with both healthcare experiences and maternal stress.ConclusionHigher medical complexity was associated with greater maternal stress, with modest indirect associations through care coordination and family-centered care. These findings suggest the potential relevance of coordinated and family-centered healthcare experiences for maternal well-being among families of CSHCN.