Dissertations, Theses, and Capstone Projects

Date of Degree

6-2023

Document Type

Dissertation

Degree Name

Ph.D.

Program

Nursing

Advisor

Juan Battle

Committee Members

Barbara DiCiccio-Bloom

Caroline Gelman

Subject Categories

Other Nursing

Keywords

Autism, caregivers, qualitative

Abstract

Despite the large number of children with autism spectrum disorder (ASD) who are annually aging out of the school-based systems in the United States, much of the academic literature has been focused on the concerns and challenges of preschool or school-aged children with ASD. As a result, there lacks a clear understanding of how primary caregivers of adult children with severe autism spectrum disorder (SASD) utilize various forms of capital to navigate care.

This qualitative descriptive study explored some of the challenges experienced by primary caregivers of adult children with SASD. Convenience sampling was used to conduct semi-structured interviews with caregivers, mothers, fathers, and other relatives, who are currently in a primary parenting role for an adult child with SASD.

Inductive latent content analysis revealed two overarching domains, I) internal journeys: nobody knows the trouble I’ve seen, and II) external challenges: out of (my) control. Domain I contained data from four themes, 1) navigate the world of autism, 2) “walked in your shoes”, 3) “keep her for as long as I can”, 4) “love him where he is at”, and a subtheme of exclusion, 5a) self-exclusion. However, domain II contained data from another subtheme of exclusion, 5b) external exclusion and the complete themes 6) a complicated and burdensome bureaucracy, and 7) “even the small behaviors are large: aggression and parental response. The study has significant implications for nursing, policy makers, and caregivers.

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