A National Mental Health Profile of Parents of Children With Medical Complexity

Nathaniel D. Bayer · Hongyue Wang · Justin A. Yu · Dennis Z. Kuo · Jill S. Halterman · Yue Li

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Family and Disability Support Research Adolescent and Pediatric Healthcare Family Support in Illness

Abstract

OBJECTIVES The mental health of parents of children with medical complexity (CMC) is poorly understood, yet it drives child and family health outcomes. For parents of CMC, compared with parents of noncomplex children with special health care needs (CSHCN) and children without special health care needs (non-CSHCN), we examined self-reported mental health, knowledge of community sources for help, and emotional support. METHODS Using parent-reported data from the combined 2016–2017 National Survey of Children’s Health, we divided the population into 3 groups: households with CMC, noncomplex CSHCN, and non-CSHCN. We compared these groups regarding the following: (1) parents’ risks for poor or fair mental health and knowledge of where to go for community help and (2) parent-reported sources of emotional support. RESULTS Of 63 955 588 parent-child dyads (weighted from a sample of 65 204), parents of CMC had greater adjusted odds of reporting poor or fair mental health compared with parents of noncomplex CSHCN (adjusted odds ratio [aOR] 2.0; 95% confidence interval [CI] 1.1–3.8) and non-CSHCN (aOR 4.6; 95% CI 2.5–8.6). Parents of CMC had greater odds of not knowing where to find community help compared with parents of noncomplex CSHCN (aOR 2.1; 95% CI 1.4–3.1) and non-CSHCN (aOR 2.9; 95% CI 2.0–4.3). However, parents of CMC were most likely to report receiving emotional support from health care providers and advocacy groups (P < .001). CONCLUSIONS Among all parents, those with CMC were at the highest risk to report suboptimal mental health. They more often reported that they do not know where to find community help, but they did say that they receive emotional support from health care providers and advocacy groups. Future researchers should identify ways to directly support the emotional wellness of parents of CMC.

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