Sources of Emotional Support Among Family Caregivers of Children With More Complex Special Health Care Needs.

OBJECTIVE

Identify sources of emotional support among caregivers of children with more complex special health care needs (SHCN) and examine their relationships with caregiver emotional well-being.

METHODS

Secondary analysis of the 2016 to 2022 National Survey of Children's Health. We categorized children by degree of medical complexity: no SHCN, less complex SHCN, and more complex SHCN. Our primary outcome was caregivers' self-reported sources of emotional support. Chi-squared testing compared caregivers' sources of emotional support across child medical complexity levels. Adjusted logistic regression analyses then examined the associations between emotional support sources and our secondary outcomes (caregiver-reported mental health, parental coping, and parental aggravation) among caregivers of children with more complex SHCN.

RESULTS

Compared to caregivers of children with no and less complex SHCN, caregivers of more complex SHCN (weighted n = 10.1 million) were significantly less likely (P<.01) to report receiving emotional support from a spouse/domestic partner (74.9% vs 78.9%-84.5%) and more likely from a health care provider (43.3% vs 27.8%-33.1%), mental health professional (30.1% vs 7.7%-10.3%), advocacy group (13.3% vs 3.0%-4.1%), and peer support group (15.4% vs 12.4%-12.7%). Among caregivers of more complex SHCN, emotional support from a family member/close friend, place of worship/religious leader, and peer support group was associated with significantly lower odds of adverse emotional well-being.

CONCLUSIONS

Caregivers of children with more complex SHCN report relying on a wide network of emotional support sources. Enhanced care coordination models should include screening for and connecting families to alternative sources of emotional support as central service.