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

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.

Psychosocial Considerations for the Child with Rare Disease: A Review with Recommendations and Calls to Action

“…However, families may experience lack of access to suitable mental health services or experience a “lack of fit” in peer support groups [ 62 ]. Behavioral health challenges for family caregivers are largely known to include caregiver stress [ 63 , 64 ]. Family caregivers often perceive that they do not have time to address their own behavioral health needs [ 60 , 61 ].…”

“…Supportive care coordination and shared care plans have been associated with improved parental mental health for families of CSHCN [ 63 , 64 ]. To address behavioral health needs in the settings where children with RD and their families are found, certain adaptations to an integrated care model such as the Medical Home, or specialty care center, may prove useful.…”

“…Care coordination for CMC with RD may improve parental mental health [ 63 , 116 ], in addition to the other expected benefits for the child. While not all healthcare providers will have the same resources, healthcare teams must proactively communicate to ensure coordinated care.…”

Parenting a child with a chronic illness during a pandemic

“…It is difficult to determine if this is related to the pandemic or child's medical complexity in this sample. However, researchers found that parents of CMC, compared with parents of CSHCN and non-CSHCN, were at a much higher risk for developing mental health issues ( Bayer et al, 2021 ; Hartley et al, 2021 ). The qualitative responses by parents in this study suggest that the pandemic has had a negative impact on their mental health and wellbeing.…”

Mental health challenges during COVID-19: perspectives from parents with children with neurodevelopmental disabilities

“…Parents of children with NDDs also experienced higher rates of depression and anxiety before the pandemic (Bayer et al, 2021 ; McCann et al, 2016 ; Scherer et al, 2019 ). During the pandemic, mental health implications for families caring for children with NDDs were also documented (Bentenuto et al, 2021 ; Cluver et al, 2020 ; Gadermann et al, 2021 ; Guller et al, 2021 ; Lee et al, 2021 ; Patrick et al, 2020 ; Shorey et al, 2021 ; Wang et al, 2021 ).…”