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Becoming an Expert Autism Caregiver: Health Literacy and Community Catalysts

Education, Social Factors, and Health Beliefs in Health and Health Care Services

ISBN: 978-1-78560-367-9, eISBN: 978-1-78560-366-2

Publication date: 21 September 2015

Abstract

Purpose

The purpose of this study is to investigate the informal micro-level mechanisms through which caregivers maximize their health literacy and caregiving skill-set, particularly in cases of emergent, pervasive health disorders. Specifically, I investigate how important micro-level social factors, such as lay self-education and local community networks, mitigate extensive experiences of medical uncertainty that are associated with caring for a child with autism. This study theorizes a series of processes of becoming lay health care professionals (HCP), which serve as effective health care interventions and ways to secure vital resources for patients and their families.

Methodology/approach

This study uses qualitative research methods in the form of 50 individual intensive interviews with primary caregivers of at least one child under the age of 18 with an official autism diagnosis, as well as two years of participant-observation at two primary sites that are autism parent and caregiver resource meetings, both located in Northern California.

Findings

This study first demonstrates the major institutional limits and gaps involved in health-related caregiving for children with autism. Next, I define the processes through which caregivers challenge these institutional constraints and fight for life altering resources for their families, which include becoming a lay diagnostician and expert caregiver. Here, I demonstrate a sophisticated set of health literacy skills and key local community-based ties that caregivers develop and rely on, which affords families the tools to overcome diverse institutional obstacles in health-seeking and health care access.

Research limitations/implications

The families in this study are predominantly white, middle-class, and reside in California. For future research, the scope of the study could be expanded by increasing the sample size and including greater geographic and demographic diversity.

Originality/value

This study contributes vital, yet missing, pieces to the autism puzzle, which currently focuses on prevention, the fight for a so-called “cure,” and the role of vaccines in disorder prevalence. In the meantime, families are living with autism each day and are struggling for understanding and knowledge, and to secure adequate support services. In doing so, this study sheds light on current institutional gaps and limits in health care and delivery for children with autism, and suggests specific effective health care interventions applicable to other cases of emergent illnesses and disorders.

Keywords

Citation

Chiaraluce, C.A. (2015), "Becoming an Expert Autism Caregiver: Health Literacy and Community Catalysts", Education, Social Factors, and Health Beliefs in Health and Health Care Services (Research in the Sociology of Health Care, Vol. 33), Emerald Group Publishing Limited, Leeds, pp. 275-296. https://doi.org/10.1108/S0275-495920150000033012

Publisher

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Emerald Group Publishing Limited

Copyright © 2015 Emerald Group Publishing Limited