Abstract

Parents of autistic children play a central role in navigating healthcare systems, coordinating services, communicating with providers, managing care at home, and reorganizing family life around their child’s needs. Although this work is often described as parent engagement, relevant research has typically treated engagement as service use, compliance, or participation, with more engagement assumed to be inherently beneficial. This dissertation challenges that assumption by reconceptualizing parent engagement in autism healthcare as a multidimensional coping process embedded within family adaptation. Drawing on family stress and resilience theory, coping theory, and the parent engagement literature, this three-paper dissertation examined what parent engagement means, how it is patterned among families, and how different forms of engagement relate to family resilience, parent well-being, and child outcomes. The first study conducted a focused literature review and directed content analysis of 48 empirical studies on parent engagement in autism healthcare. Across the reviewed literature, 393 raw engagement actions were identified and organized into 12 engagement groups that together reflect behavioral, relational, and attitudinal dimensions of engagement. Mapping these groups onto Skinner et al.’s (2003) coping taxonomy showed that parent engagement serves multiple coping functions, ranging from problem solving, support seeking, and negotiation to accommodation, withdrawal, and self-protection. These findings supported a conceptual framework that positions parent engagement not as a simple measure of participation, but as a dynamic response to healthcare demands shaped by family resources, system conditions, and broader caregiving strain. Building on the conceptual framework developed in the first study, the following two studies used nationally representative data to empirically identify engagement profiles and examine the proposed pathways between parent engagement, family resilience, and parent and child outcomes. The second study used pooled 2022–2023 National Survey of Children’s Health (U.S. Census Bureau, 2024). data to identify parent healthcare engagement profiles among families of autistic children and families of children with other special healthcare needs. Latent class analyses identified three behavioral engagement profiles and three relational engagement profiles across age and diagnostic subgroups. Behavioral profiles reflected low, moderate, and high caregiving intensity, with the high class characterized by intensive care coordination, home healthcare provision, and employment sacrifice. Families of autistic children were disproportionately represented in the moderate and high behavioral engagement classes. Relational profiles reflected a consistent gradient in shared decision-making quality, from low to high collaborative care. The third study examined associations between these profiles and family resilience, parent well-being, and child outcomes among families of autistic children. Higher behavioral engagement was consistently associated with greater parenting stress, poorer parent mental health, and poorer child general health, and was not associated with family resilience. In contrast, high relational engagement was associated with stronger family resilience, better parent mental health, lower parenting stress, and more positive child functioning. Family resilience mediated the association between high relational engagement and multiple parent and child outcomes, but did not mediate behavioral engagement pathways. Together, the findings show that parent engagement is not one thing, and more engagement is not always better. Behavioral engagement may signal the structural burden families absorb when healthcare systems are fragmented or insufficiently supportive, whereas relational engagement may function as a resilience-promoting resource when providers create genuinely collaborative care relationships. Supporting families of autistic children therefore requires moving beyond efforts to increase parent participation and toward systems that make engagement sustainable, supported, and shared.

Committee Chair

Melissa Jonson-Reid

Committee Members

Jason Jabbari; Jun-Hong Chen; Natasha Marrus; Shenyang Guo; Trish Kohl

Degree

Doctor of Philosophy (PhD)

Author's Department

Social Work

Author's School

Brown School

Document Type

Dissertation

Date of Award

8-1-2026

Language

English (en)

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