Nathaniel D Bayer1, Hongyue Wang2, Justin A Yu3, Dennis Z Kuo4, Jill S Halterman2, Yue Li5. 1. Department of Pediatrics, Golisano Children's Hospital, University of Rochester, Rochester, New York nathaniel_bayer@urmc.rochester.edu. 2. Department of Pediatrics, Golisano Children's Hospital, University of Rochester, Rochester, New York. 3. Divisions of Pediatric Hospital Medicine and Palliative Care Medicine, Department of Pediatrics, University of Pittsburgh, Pittsburgh, Pennsylvania. 4. Department of Pediatrics, University at Buffalo, Buffalo, New York. 5. Department of Public Health Sciences, University of Rochester, Rochester, New York.
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.
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.
Authors: Sarah R McCarthy; Elizabeth H Golembiewski; Derek L Gravholt; Jennifer E Clark; Jeannie Clark; Caree Fischer; Hannah Mulholland; Kristina Babcock; Victor M Montori; Amie Jones Journal: Children (Basel) Date: 2022-05-05