Vol.:(0123456789) 1 3
Review Journal of Autism and Developmental Disorders
https://doi.org/10.1007/s40489-021-00283-6
REVIEW PAPER
Working Beyond Capacity: a Qualitative Review of Research
on Healthcare Providers’ Experiences with Autistic Individuals
Rae Morris
1,2
· Andrea Greenblatt
3
· Michael Saini
3
Received: 19 April 2021 / Accepted: 26 July 2021
© The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature 2021
Abstract
Barriers to access and delivery of efective healthcare for autistic individuals have received attention in the social science
literature. Less understood is why and how these barriers exist. The purpose of this qualitative review was to explore and
interpret salient fndings and characteristics of qualitative research that has examined the experiences of healthcare providers
providing care to autistic individuals. A systematic information retrieval of electronic databases resulted in 15 qualitative
research studies that met the inclusion criteria. Analysis of thematic fndings and characteristics across studies was conducted,
and a deeper interpretation highlighted an emphasis and reinforcement of the complexities of supporting autistic individuals
in the healthcare context. Considerations are ofered for diversifying and strengthening future research in this area.
Keywords Qualitative synthesis · Qualitative health research · Autism · Healthcare · Health services · Service provider
Introduction
Autistic individuals represent a unique population in the
healthcare system and several studies have reported signif-
cant barriers faced by this population with regard to access
and delivery of efective healthcare (Barber, 2017; Dern &
Sappok, 2016; Nicolaidis et al., 2013; Vogan et al., 2017).
Reported challenges have highlighted systematic gaps as well
as issues of miscommunication, stigmatization, and margin-
alization created and reinforced through interactions with
healthcare providers (Nicolaidis et al., 2015; Vogan et al.,
2017). Autistic individuals have identifed barriers including
not knowing where to access support, feeling overwhelmed
with steps required to access support, challenges in describing
their needs, unmet service needs, and negative experiences
with healthcare systems and providers (Vogan et al., 2017).
Heterogeneity across the autistic spectrum means that one
autistic person’s experience of their diagnosis is not repre-
sentative of another’s and that autistic people have a variety of
diferent needs (Masi et al., 2017; McCormick et al., 2020. For
instance, autistic individuals with mental health and/or medical
concerns have reported being signifcantly less satisfed with
healthcare services than those without these additional needs
(Vogan et al., 2017).
In a recent scoping review that documented themes
across both quantitative and qualitative studies, Morris et al.
(2019) noted recurring feedback from healthcare providers
expressing that they lacked the knowledge and skills as well
as training and support to efectively work with autistic indi-
viduals. In addition, healthcare providers expressed the need
for better coordination and systematic changes at all levels of
the healthcare system to better address the needs of autistic
individuals. While this scoping review provided important
insights about the experiences of healthcare providers, it
was limited by methodology that focused on breadth of the
issues, rather than depth. To address this gap, this current
meta-synthesis review was conducted to explore in-depth the
more salient themes across qualitative studies and deepen
our understanding of the characteristics of this research to
date in order to identify common and missing elements,
* Andrea Greenblatt
andrea.greenblatt@utoronto.ca
Rae Morris
rae.morris@alumni.ubc.ca
1
School of Social Work, University of British Columbia, 2080
West Mall, Vancouver, BC V6T 1Z2, Canada
2
UBC Institute of Mental Health, Department of Psychiatry,
University of British Columbia, 2255 Wesbrook Mall,
Vancouver, BC V6T 2A1, Canada
3
Factor-Inwentash Faculty of Social Work, University
of Toronto, 246 Bloor St West, Toronto, ON M5S 1V4,
Canada