Caregivers’ perspectives on health-care transition in autism

Abstract

Purpose

Adults with autism spectrum disorder (ASD) experience significant health-care disparities across physical and mental health domains resulting in poorer health and quality of life. Poor transitions to adult care negatively impact the health of adults with ASD. Current research focuses on personal factors in research samples that lack diversity. The purpose of this study is to examine the lived health-care experiences of geographically and ethnically diverse young adults with ASD in adult care settings in the USA to understand provider and system-level factors affecting their health.

Design/methodology/approach

Nine caregivers of young adults with ASD participated in key informant interviews describing their experiences in navigating the health-care system. Data were analyzed using a grounded theory approach.

Findings

The data indicated that limited quantity of services, poor quality of services, and high cost of services had a negative effect on the health of adults with ASD. Issues cascaded to become more complex.

Practical implications

Practical implications for payors, providers, persons with ASD and their families are discussed in this paper.

Originality/value

To the best of the authors’ knowledge, this study answers the call to better understand system-level factors affecting the health of geographically and ethnically diverse people with ASD.

Contributors

Jaclyn K. Schwartz:

Bio :

Jaclyn K. Schwartz is based at the Department of Occupational Therapy, Florida International University, Miami, Florida, USA.

Mavara Agrawal:

Bio :

Mavara Agrawal is based at the Department of Medicine, Florida International University, Miami, Florida, USA.

Ingris Treminio:

Bio :

Ingris Treminio is based at the Department of Occupational Therapy, Florida International University, Miami, Florida, USA.

Sofia Espinosa:

Bio :

Sofia Espinosa is based at the Department of Occupational Therapy, Florida International University, Miami, Florida, USA.

Melissa Rodriguez:

Bio :

Melissa Rodriguez is based at the Department of Occupational Therapy, Florida International University, Miami, Florida, USA.

Lynne Richard:

Bio :

Lynne Richard is based at the Department of Occupational Therapy, Florida International University, Miami, Florida, USA.

Journal

Journal ID (publisher): AIA

Journal ID (doi): 10.1108/AIA

Title: Advances in Autism

Abbreviated Title: AIA

Publisher: Emerald Publishing

ISSN: 2056-3868

ISSN: 2056-3868

Publication date (Print): 27 February 2020

Volume: 6

Issue: 2

Pages: 153-164

Affiliations

Department of Occupational Therapy, Florida International University , Miami, Florida, USA

Department of Medicine, Florida International University , Miami, Florida, USA

Department of Occupational Therapy, Florida International University , Miami, Florida, USA

Author notes

Jaclyn K. Schwartz can be contacted at: [e-mail]

Article

Publisher ID: 641260 Original-pdf ID: AIA-07-2019-0022.pdf Filename ID: AIA-07-2019-0022

DOI: 10.1108/AIA-07-2019-0022

Copyright statement: © Emerald Publishing Limited

Page count

Figures: 1, Tables: 1, Equations: 0, References: 37, Pages: 1, Words: 6238

Product

Self URI (journal-page): http://www.emeraldgrouppublishing.com/aia.htm

Categories

Compound subject: research-article, Research paper

Compound subject: cat-HSC, Health & social care

Compound subject: cat-LID, Learning & intellectual disabilities

Custom metadata

copyright-code M

deliverables Web-ready article package

peer-reviewed Yes

academic-content Yes

EContentType JOURNAL

rightslink included