The Hidden Weight of Engagement: Latent Classes of Parent Engagement In Autism Care

Background and Purpose:
Parent engagement in children’s healthcare is often framed as beneficial, with greater involvement assumed to reflect better care and stronger family functioning. However, this assumption may obscure meaningful heterogeneity in how families engage and whether intensive engagement reflects support or strain. This study identified latent profiles of parent healthcare engagement among families of autistic children and compared them with families of children with other special healthcare needs (CSHCN), with attention to developmental stage.

Methods:
Data came from the 2022–2023 National Survey of Children’s Health. The analytic sample included parents of autistic children (n = 3,152) and a comparison group of CSHCN without current or prior autism diagnoses (n = 20,412), stratified by ages 0–5 and 6–17. Separate latent class analyses were conducted for behavioral engagement and relational engagement within each subgroup. Behavioral engagement indicators captured emergency department use, hospital stays, preventive visits, care coordination time, home healthcare time, and employment adjustments. Relational engagement was measured using three shared decision-making items from the NSCH Medical Home module. One- to five-class models were estimated per subgroup, with selection based on fit statistics, entropy, class size, and interpretability.

Results:
Across all eight subgroup analyses, a three-class solution provided the best fit, yielding low, moderate, and high engagement profiles in both behavioral and relational domains. Behavioral classes were primarily differentiated by care coordination, home healthcare time, and employment disruption. Among autistic families, the high behavioral engagement profile was defined by intensive care coordination, substantial home healthcare involvement, and marked employment sacrifice. In contrast, the high behavioral engagement profile in the non-autistic comparison group was more strongly characterized by acute healthcare utilization, including hospital stays and emergency department visits. Families of autistic children were more likely than comparison families to be classified in moderate and high behavioral engagement classes. Relational engagement showed a highly consistent gradient across all subgroups, ranging from low to high quality shared decision-making; however, autistic families were less likely than comparison families to belong to the highest relational engagement class.

Conclusions and Implications:
Findings suggest that parent engagement in autism care is multidimensional and should not be interpreted through a simple “more is better” lens. High behavioral engagement among families of autistic children may reflect coordination burden transferred from fragmented systems onto families, rather than an inherently beneficial form of involvement. This burden falls on families who are left to absorb the labor of managing fragmented systems. From a social work perspective, these findings shift attention from perceived deficits in family engagement to structural inequities in service systems. The study advances person-in-environment and equity-oriented understandings of family caregiving by showing that the problem may lie less in whether families engage and more in whether systems are organized to support them. For practice and policy, the implications extend beyond improving services to reorienting the central question from “how do we get families to engage more?” to “how do we build responsive, coordinated systems so families do not have to carry this burden alone?”