Received: 5 October 2017 Revised: 8 July 2018 Accepted: 23 July 2018

DOI: 10.1111/cch.12611

REVIEW ARTICLE

Medical care experiences of children with autism and their

parents: A scoping review
Shelby A. Wilson1 | Catherine C. Peterson2

1
Department of Applied Behavior Analysis
Services, The Children Center of Wayne Abstract
County, Detroit, Michigan Children with autism spectrum disorder (ASD) and their families may benefit from the
2
Department of Psychology, Eastern Michigan
provision of additional supports in health care settings, particularly when preparing for
University, Ypsilanti, Michigan
Correspondence
and attending medical appointments. This review examined literature that describes
Shelby A. Wilson, Department of Applied experiences in medical care settings from the perspective of patients under age 18
Behavior Analysis Services, The Children
Center of Wayne County, Detroit, MI.
with ASD and their caregivers. A scoping review was conducted to examine the expe-
Email: [email protected] riences of children with ASD and their families in medical care settings. Twenty‐nine
studies meeting inclusion criteria were identified and reviewed. The review indicated
a number of challenges (e.g., parent‐reported problems in parent‐provider communi-
cation and overwhelming environments) as well as factors that facilitate positive
experiences (e.g., providing positive reinforcement and explaining exam steps) during
medical appointments. Children with ASD and their families are faced with many chal-
lenges while receiving care in medical settings. The present review identified many
challenges families face, as well as facilitators of positive experiences. Understanding
the unique experiences of patients with ASD and their parents will help to improve
experiences in medical care settings for children, caregivers, and health care providers.

KEY W ORDS

autism spectrum disorder, medical care, parents, patients

1 | I N T RO D U CT I O N Because children with ASD frequently utilize medical care ser-

vices, it is important to understand their and their caregivers' experi-
It is currently estimated that one in 68 children meets criteria for ences of those services (Wu, Kung, Li, & Tsai, 2015). These children
autism spectrum disorder (ASD; Christensen, 2016). ASD is character- have special behavioural, communication, and health care needs
ized by difficulty with social communication as well as restricted or (Schlenz, Carpenter, Bradley, Charles, & Boan, 2015). Understanding
repetitive behaviour or interests (American Psychiatric Association, how these needs present in medical settings may be key in facilitating
2013). Children with ASD often have co‐morbid developmental, psy- better experiences for children, their families, and their health care
chiatric, and medical conditions, such as gastrointestinal symptoms, providers (HCPs; Tregnago & Cheak‐Zamora, 2012). This scoping
epilepsy, and seizures (Levy et al., 2016). Children with ASD are more review will examine extant literature that describes experiences in
likely to have these conditions, as well as asthma and food allergies, medical care settings from the perspective of children with ASD and
than children without ASD (Schieve et al., 2012). Unsurprisingly, these their caregivers.
parents are concerned by their children's many health conditions
(Strunk, Pickler, McCain, Ameringer, & Myers, 2014). One study indi-
cated that children with ASD often have associated complex health 2 | METHOD
care needs that are accompanied by greater medical service utilization
than children without ASD, including more outpatient, emergency This scoping review followed the methodological framework set forth
department, and inpatient visits (Liptak, Stuart, & Auinger, 2006). by Arksey and O'Malley (2005). A scoping review differs from other

Child Care Health Dev. 2018;1–11. wileyonlinelibrary.com/journal/cch © 2018 John Wiley & Sons Ltd 1
2 WILSON AND PETERSON

types of reviews in several ways. First, unlike a narrative review, a

scoping review involves a systematic search of the literature and Key messages
answers a specific, explicit question. The question answered by a
scoping review is slightly broader than that of a systematic review. A • The environments of medical care settings and the

scoping review includes all relevant literature without evaluating the demands placed on children while in these settings

quality of evidence, unlike a systematic review, and does not involve may contribute to challenging child behaviour, which

quantitative synthesis of findings, unlike a meta‐analysis (Pham et al., can in turn impact the care they receive.

2014). Studies investigating experiences of families of children with • Parents report that health care providers can both
ASD in medical settings examine a broad range of factors and, because promote and hinder positive experiences during
of their exploratory nature, often report only descriptive rather than medical appointments.
inferential statistics. Thus, these studies do not lend themselves well • Enabling child communication, provider understanding
to meta‐analysis and effect size calculation, making a scoping review and flexibility, and parental preparedness can help
a more feasible and informative approach. promote positive experiences.
The current review sought to answer two questions: (a) Do chil-
• Helpful educational resources and practice guidelines
dren with ASD and their caregivers experience challenges in medical
are available for health care providers and parents.
care settings? Because many children with ASD have complex health
• Future intervention research is needed to test specific
needs and utilize medical services at higher rates than neurotypical
interventions or quality improvement initiatives.
children, it is important to understand how the experiences of these
families may or may not differ from others. (b) Are there any needs
unique to these children and families in receiving care in medical set-
parents OR families OR caregivers OR carers AND (medical care).
tings? Children with ASD benefit from additional support for skills
Upon initial search, 417 records were identified through PubMed,
such as communication in other settings. Understanding how their
157 were identified through CINAHL, and 830 records were identified
needs for support manifest in medical settings would be key in educat-
through PsychInfo. The literature search in 2018 produced an addi-
ing both HCPs and parents about steps they can take to improve these
tional 45 records from PubMed, 121 from PsychInfo, and 92 from
interactions.
CINAHL. Forty‐two additional articles were identified by searching
Articles in the present review meet the following inclusion
included article reference lists and frequently cited journals (i.e., Jour-
criteria: (a) included a sample of children (i.e., under age 18) with an
nal of Autism and Developmental Disorders, Pediatrics, Research in
ASD and/or caregivers of children with ASD, (b) examined children
Autism Spectrum Disorders, and Journal of Developmental and Behavioral
or parents within the context of medical care (e.g., primary care and
Pediatrics). Initial screening of records resulted in the exclusion of
emergency department), (c) reported findings of original research,
1,271 of the original articles and all (263) of the articles identified in
and (d) have been published within the last 30 years (i.e., between
2018. Included studies were primarily conducted in the United States,
1988 and 2018). It should be noted that many studies included in this
with a minority conducted in European counties. See Figure 1 for a
review also utilized physician report. Although this is valuable informa-
summary of the selection process.
tion, this review focused on the perspectives of patients and their
Table 1 outlines key characteristics of the included studies. Nota-
families, and thus, only parent and/or child report was included.
bly, although the inclusion criteria allowed for studies conducted as
Reviews were excluded if they did not report original findings. How-
early as 1986, the earliest study included in this review was published
ever, these were utilized to identify additional relevant studies for
in 2006, and 52% of the studies were published within the last 2 years.
inclusion. Studies were excluded if (a) the focus was on financial
The examination of experiences of children with ASD and their fami-
aspects of health care, an intervention, or psychological/behavioural
lies in medical settings based on parent report has been relatively
services or (b) the article was a case study. This study sought to
understudied until recently. This may be due in part to the increase
explore typical experiences of families while in a medical care setting.
in ASD diagnoses over the past several years as well as a growing
Therefore, financial experiences and psychological or behavioural ser-
interest in patient and family experiences of health care across set-
vices are beyond the scope of this review. Additionally, findings of
tings and populations.
intervention studies do not represent the experiences of most families
and consequently were not included. Case studies were excluded due
to lack of generalizability.
3.2 | Background information about medical
encounters
Although the majority of this paper will focus on the subjective expe-
3 | RESULTS
riences of families during medical visits, some objective characteristics,
which were not discussed as being positive or negative, were identi-
3.1 | Study identification and selection process fied. Children with ASD may present to medical settings for a number
Electronic databases were searched in September of 2016 and again of reasons. When visiting the emergency department, Casey et al.
in January 2018 using the following search terms: (autism spectrum (2015) categorized chief complaints as neurological, medical, or envi-
disorder) OR ASD AND children OR adolescents OR teenagers OR ronmental, whereas Tint, Robinson, and Lunsky (2011) found half of
WILSON AND PETERSON 3

TABLE 1 Key study characteristics

Characteristic Number Percentage

Year published
2006–2009 3 10
2010–2013 11 38
2014–2016 15 52
Method
Survey 14 48
Qualitative interview/focus group 9 31
Other 6 21
a
Setting examined
Unspecified/general health care 13 45
Primary care 5 17
Inpatient 4 14
Medical home 4 14
Emergency department 2 7
Other 2 7
Source of report
Caregivers 22 76
Caregivers and children 2 7
Chart 2 7
Other 3 10
FIGURE 1 Study selection process flow chart
Sample size
<25 10 34
their small sample (n = 24) to present at the emergency department
26–50 5 17
due to an episode of aggression. In one study of general health care,
51–100 3 10
children with ASD were found to spend roughly twice as much time
101–200 5 17
with their physician during their visit than did children with other spe-
>1,000 6 21
cial health care needs (Liptak, Stuart, et al., 2006). In one large study
Child ages includedb
(n = 5,186), individuals with ASD were also found to have a 1.5 times
<3 9 31
longer length of stay when hospitalized compared with an age‐ and
3–6 19 66
gender‐matched sample (n = 20,744; Lokhandwala, Khanna, & West‐
7–10 19 66
Strum, 2011). It is important to note that this study included individ-
11–14 19 66
uals of all ages, with 68% of participants under the age of 20. Although
15–18 17 59
not addressed in these studies, it is certainly possible that the
>18 5 17
extended amount of time these families spend in medical care settings
Used comparison group 6 21
may be related to the challenges that families face during visits. These
Used NS‐CSHCN 5 17
challenges, which are discussed at length below, include child problem
behaviour and communication deficits, overwhelming environments, Note. NS‐CSHCN: National Sample of Children with Special Health Care
Needs.
demanding activities, and difficulties in interactions with HCPs. This a
Some studies examined medical care in more than one setting.
trend of longer visits was not found in a small study (n = 36), which b
Some studies only reported mean age. In this case, studies were only
found no difference in length of stay or number of tests run between counted in the age range that included the mean.
emergency department visits for children with and without ASD
(Casey et al., 2015). Table 2 provides a summary of the variables Consequently, certain antecedent conditions may evoke challenging
examined in each of the included studies. behaviour in children with ASD (Bultas, 2012). Parents have identified
common antecedents, functions, and consequences of child problem
behaviour in a number of studies (Bultas, McMillin, & Zand, 2016).
3.3 | Challenges in medical settings
Possible medical setting‐specific antecedents include boredom, stimu-
Families reported a number of challenges encountered during medical lation from a novel or less familiar environment, and absence of usual
visits in both inpatient and outpatient care. See Table 3 for a summary routines (Bultas, 2012). Parents have interpreted challenging behav-
of challenges. iours as attempts to communicate frustration, self‐soothe, and express
pain, whereas HCPs may perceive behaviour as aggressive (Johnson,
3.3.1 | Child behaviour and communication Bekhet, Robinson, & Rodriguez, 2014). These challenging behaviours
ASD is characterized by restricted behaviours and activities as well as can contribute to parental stress, distract parents from paying atten-
deficits in communication (American Psychiatric Association, 2013). tion to the HCP, and prevent parents from remembering questions
 4

TABLE 2 Key study variables

Source of report
Study Setting for ASD sample Child ages Characteristics Challenges Facilitators Satisfaction
Angell and General health care 37 caregivers 4–10 X
Solomon (2014)
Bultas et al. (2016) Office‐based medical care 49 parents 3–15 X X
Bultas (2012) Not specified 11 mothers 3–6 X X
Carbone, Behl, Medical home 5 parents 2–14 X
et al. (2010)
Carbone et al. (2013) Primary care 144 parents Mean = 7.69 X
Casey et al. (2015) Emergency department 36 patient charts 1.5–18 X
Cheak‐Zamora General health care 3,055 parents 0–17 X
and Farmer (2015)
Cheak‐Zamora General health care 13 youth and 15–22 X
and Teti (2015) 19 caregivers
Chiri and Warfield (2012) General health care 2,088 parents 3–17 X
Davignon et al. (2014) Hospital‐based 20 mothers 3–17 X X
procedural care
Golnik, Maccabee‐Ryaboy, Primary care 128 mothers 0–18 X X
et al. (2012)
Golnik, Scal, Wey, Medical home 203 parents 0–18 X X
and Gaillard (2012)
Hubner et al. (2016) General health care 3,055 parents 2–17 X X
and medical home
Johnson et al. (2014) Inpatient 5 mothers 5–12 X X
Kogan et al. (2008) General health care 2,088 parents 3–17 X
Kopecky et al. (2013) Inpatient 80 caregivers 2–49 X X X
Kuhlthau et al. (2016) General health care 183 caregivers 13–26 X
Levy et al. (2016) Primary care 20 parents 2–5 X
Lindberg et al. (2012) Perioperative care 12 parents 5–16 X X
Liptak, Orlando, et al. (2006) Primary care 41 parents Mean = 6.9 X
Liptak, Stuart, et al. (2006) General health care 111 parents <5–17 X
Lokhandwala et al. (2011) Inpatient 5,186 discharge <10 to >21 X
records
Muskat et al. (2015) Inpatient 22 parents and 6–16 X X
6 youth

(Continues)
WILSON AND PETERSON
WILSON AND PETERSON 5

they wanted to ask (Bultas et al., 2016). In extreme cases, children

Satisfaction
engaging in problem behaviour may even be physically restrained,
which parents—and undoubtedly the child as well—find distressing

8
(Lindberg, von Post, & Eriksson, 2012). Although the use of physical
restraint is certainly a concerning practice, further discussion is
beyond the scope of the present review.
Facilitators

Even in the absence of problem behaviour, difficulty with expres-

sive and receptive communication can pose challenges (Bultas et al.,
2016; Muskat et al., 2015). Kopecky, Broder‐Fingert, Iannuzzi, and

10
X

X
Connors (2013) found that only 23% of patients with ASD communi-
cated verbally and even less could express pain using words, indicating
that children may have difficulty or be unable to describe their symp-
Challenges

toms (Chiri & Warfield, 2012). Receptively, children may also have dif-
ficulty understanding instructions and information from HCPs
17
X

(Johnson et al., 2014; Muskat et al., 2015). This could be problematic

if HCPs are assuming adequate comprehension of verbal communica-
tion with their patients.
Characteristics

3.3.2 | Challenging environments

Closely tied to challenging behaviours are the environments in which
X
X

medical visits take place. Children with ASD may experience negative
reactions to particular sensory stimuli in their environments (e.g.,
bright lights, beeping of machines, and physical touch), a symptom that
Mean = 10.9

was only recently added to the criteria for ASD with the release of the
Child ages

Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition

10–18
16–72
4–11

3–17

(American Psychiatric Association, 2013; Muskat et al., 2015). Other

characteristics of certain medical settings that aggravate child sensitiv-
ities include the presence of many HCPs in a treatment room, long
wait times, and the fast pace of office or department (Kopecky
document reviews of
Interviews, behavioural

et al., 2013; Levy et al., 2016; Muskat et al., 2015). Parents reported
observations, and

that they feel rushed and that their visits are not long enough to dis-
Source of report

24 chart reviews
for ASD sample

cuss all their concerns (Levy et al., 2016). This is notable because fam-
3,025 parents
16 families

114 parents
12 parents

ilies of children with ASD may spend more time in medical visits than
families of children without ASD (Lokhandwala et al., 2011). The only
study included in this review that found parents to report feeling that
they did have enough time with their HCP was conducted in a sample
of parents whose children received care in a medical home (Davignon,
Friedlaender, Cronholm, Paciotti, & Levy, 2014). According to the U.S.
Emergency department

Department of Health and Human Services, a medical home is a

General health care

General health care

model of primary care that is comprehensive and patient centred

and provides coordinator care that is accessible and focused on qual-
Medical home
Primary care

ity and safety (Defining the PCMH, n.d.). Unfortunately, most children
Setting

with ASD do not have a medical home, which suggests the more
common experience is the sense of not having enough time (Williams
et al., 2012).
Note. ASD: autism spectrum disorder.

3.3.3 | Challenging procedures

Several specific hospital activities and procedures that often occur
Zuckerman et al. (2014)
Solomon et al. (2016)

Williams et al. (2012)

(Continued)

during medical visits have been identified as particularly challenging.

Strunk et al. (2014)
Tint et al. (2011)

Physical examination of the ears, throat, and genitals, blood pressure

measurement, blood draws, injections, and IV removal were all been
Frequency

identified as difficult activities (Kopecky et al., 2013; Strunk et al.,

TABLE 2

Study

2014). In addition, transitions from one room to another was reported

by parents to be difficult for children (Muskat et al., 2015).
6 WILSON AND PETERSON

3.3.4 | Difficulty with health care providers not all parents report receiving information in advance to help them

Studies of families in all medical settings identified a number of chal- and their child prepare (Solomon et al., 2016).

lenges experienced in parent–physician and child–physician interac- Parents also sometimes feel that HCPs do not listen to and sup-

tions. The vast majority of studies focused on parent perception of port them (Carbone, Farley, & Davis, 2010; Levy et al., 2016; van

HCPs, as discussed below. Notably, Cheak‐Zamora and Teti (2015) Tongerloo, van Wijngaarden, van der Gaag, & Lagro‐Janssen, 2015).

found that the youth (ages 15–22) with ASD in their study largely Some parents believe this is due to a lack of interest or time on the

reported that they did not fully understand the role of their HCPs, part of the physician, and this can make parents feel helpless (Strunk

and some described a lack of interest in gaining a better et al., 2014). Even when providers are perceived as listening, parents

understanding. do not always feel that their concerns are adequately responded to
(Carbone, Farley, & Davis, 2010). Strunk et al. (2014) noted that some
parents felt that providers treated them poorly and perceived them
Perceived lack of understanding and capability
negatively as parents. Conversely, Williams et al. (2012) found that
Parents in several studies reported feeling that HCPs do not have ade-
most parents of children receiving care in medical homes felt that
quate basic knowledge about ASD, including the reason for the child's
HCPs provided a caring environment and were encouraging of
behaviour, the pervasive impact of ASD on the family, how ASD pre-
parents' abilities.
sents differently in individuals, and consequently how the needs of
individuals with ASD differ (Bultas, 2012; Levy et al., 2016; Strunk
Shared decision making
et al., 2014; Cheak‐Zamora & Teti, 2015).
One construct that may be related to parents feeling supported and
Parents also may perceive HCPs as not fully capable of carrying
heard is shared decision making (SDM). One large study (n = 3,966)
out visits (Bultas et al., 2016). Although in some studies most parents
found that 69.9% of parents reported experiencing SDM with their
gave positive reports of the physician's ability (Carbone et al., 2013;
child's provider (Hubner, Feldman, & Huffman, 2016), and multiple
Davignon et al., 2014), this may not be true for all aspects of care.
studies have found parents of children with ASD to report lower rates
Out of 17 areas of care explored in one study (e.g., routine preventa-
of SDM than parents of children with other special health care needs
tive care and addressing gastrointestinal concerns), most caregivers
(Hubner et al., 2016; Zuckerman, Lindly, Bethell, & Kuhlthau, 2014).
rated their child's HCP as “good” in only three areas. Only 28% felt
Receiving care in a medical home is associated with greater SDM,
that HCPs were good at addressing ASD‐specific needs, and having
which is associated with higher levels of parental satisfaction with care
a developmental paediatrician was the only factor significantly associ-
(Golnik, Maccabee‐Ryaboy, Scal, Wey, & Gaillard, 2012; Hubner et al.,
ated with a rating of “good” in this area (Liptak, Orlando, et al., 2006).
2016; Zuckerman et al., 2014). On the basis of both quantitative mea-
In their study of parents of adolescents with ASD, Strunk et al. (2014)
sures of SDM and open‐ended interview questions, the current review
noted that parents did not believe that their child was receiving ade-
indicates that SDM is not occurring for all families, and this can have a
quate care or attention from their primary care physician.
negative impact on how parents feel about their child's health care.
Some studies have identified specific concerns that parents have
about the care HCPs provide (Muskat et al., 2015). Physician inflexibil-
ity has been indicated as a parental concern in primary, inpatient, and 3.4 | Parent satisfaction with care
procedural care (Solomon, Heritage, Yin, Maynard, & Bauman, 2016;
Despite these challenges, parents report that they are satisfied overall
Carbone, Farley, & Davis, 2010). Parents often feel that HCPs are
with their child's care on measures of parent satisfaction. One large
unwilling to change their approach, which may work with most children,
study (n = 2,088) by Chiri and Warfield (2012) found that only 7.9%
to accommodate the unique needs of children with ASD (Bultas, 2012).
of caregivers were dissatisfied with their child's general health care,
Some physicians are perceived as noticeably uncomfortable working
and another study found that only 3.2% of parents were dissatisfied
with a child with ASD (Strunk et al., 2014). In addition to this perceived
with their child's transition services (Kuhlthau et al., 2016). Higher
lack of understanding, parents often feel that physicians do not recog-
levels of satisfaction are associated with receiving care in a medical
nize the parents as experts on their child (Carbone et al., 2013).
home (Golnik, Maccabee‐Ryaboy, et al., 2012). However, studies have
found parents of children with ASD to be less satisfied with care than
Communication difficulties parents of children with other developmental disabilities (Liptak,
Parents perceive a lack of communication on two levels: communica- Orlando, et al., 2006). In addition, Liptak, Orlando, et al. (2006) found
tion between their child's providers and communication between par- that parents of children with ASD made more negative comments
ents and providers. Parents reported that information is not shared about their child's HCP than did parents of children with other devel-
consistently between the various HCPs responsible for their child's opmental disabilities. Dissatisfaction becomes more salient in qualita-
care (Lindberg et al., 2012; Solomon et al., 2016). This can lead to frus- tive studies. Many parents report being disappointed because their
tration in parent–physician communication. Because information that child's care is not as comprehensive and family centred as desired
parents share with one provider is not always passed on to other rel- (Carbone, Behl, Azor, & Murphy, 2010; van Tongerloo et al., 2015).
evant parties, parents must repeat themselves (Muskat et al., 2015). In When considering these findings, it is worth noting that ratings of
addition, conversations between parents and providers may be started satisfaction with care are influenced by many factors, such as commu-
but then interrupted and left unfinished (Lindberg et al., 2012). Com- nication and collaboration (e.g., Galil et al., 2006), which are beyond
munication before a procedure is done is especially important, but the scope of the present review.
WILSON AND PETERSON 7

TABLE 3 Challenges in medical care and facilitators of positive experiences

Challenges Child behaviour and communication Bultas (2012)

Bultas et al. (2016)
Chiri and Warfield (2012)
Johnson et al. (2014)
Kopecky et al. (2013)
Lindberg et al. (2012)
Muskat et al. (2015)
Challenging environments Bultas et al. (2016)
Davignon et al. (2014)
Kopecky et al. (2013)
Levy et al. (2016)
Lokhandwala et al. (2011)
Muskat et al. (2015)
Williams et al. (2012)
Challenging procedures Kopecky et al. (2013)
Muskat et al. (2015)
Strunk et al. (2014)
Difficulty with HCPs Bultas (2012)
Perceived lack of understanding and capability Carbone et al. (2013)
Cheak‐Zamora and Teti (2015)
Davignon et al. (2014)
Levy et al. (2016)
Liptak, Orlando, et al. (2006)
Muskat et al. (2015)
Solomon et al. (2016)
Strunk et al. (2014)
Communication difficulties Carbone, Farley, and Davis (2010)
Levy et al. (2016)
Lindberg et al. (2012)
Muskat et al. (2015)
Solomon et al. (2016)
Strunk et al. (2014)
van Tongerloo et al. (2015)
Williams et al. (2012)
Shared decision making Hubner et al. (2016)
Golnik, Maccabee‐Ryaboy, et al. (2012)
van Tongerloo et al. (2015)
Zuckerman et al. (2014)
Facilitators Provider initiated Bultas et al. (2016)
ASD and child‐specific knowledge Carbone et al. (2013)
Acknowledge parent as expert on their child Davignon et al. (2014)
Preparation and flexibility Lindberg et al. (2012)
Slowing down and patience Muskat et al. (2015)
Explain steps of exam/procedure
Provide reinforcement
Write down instructions
Communication between staff
Medical settings Bultas (2012)
Developmentally appropriate toys Bultas et al. (2016)
Weighted blankets, noise cancelling headphones, and sunglasses Kopecky et al. (2013)
Low lighting Muskat et al. (2015)
Staff supervision of child
Decrease wait time
Staff education and training
Visual aids and social stories
Parent initiated Johnson et al. (2014)
Provide reinforcement Kopecky et al. (2013)
Provide HCP with child‐specific information Strunk et al. (2014)
Preparation
Social scripts
Break exam or procedure into steps

Note. ASD: autism spectrum disorder; HCP: health care provider.

3.5 | Facilitators of positive experiences families made that they believed would make visits more manageable

Although this review set out to explore the needs of children with for themselves and other families of children with ASD. These facilitat-

ASD in medical care settings, the studies identified also revealed sev- ing factors fell into three categories: provider initiated, medical set-
eral factors (facilitators) that promote positive experiences in response tings, and parent initiated. There were several factors related to how
to these families' needs. Some of the facilitators that parents identified HCPs carried out the visit and interacted with families that caregivers
were experiences families had encountered. Others were suggestions reported as helpful. Other facilitators did not rely on HCP initiation.
8 WILSON AND PETERSON

Some facilitators could be found in the medical care environment. and parental frustration. Fortunately, many factors promote more pos-
Notably, one adolescent with ASD specifically suggested creating a itive experiences. Physician knowledge and flexibility, environmental
“procedure‐based, child‐friendly storybook that would be used to pre- supports, and parent‐initiated preparation can be helpful in facilitating
pare patients with ASD for standard procedures” (Muskat et al., 2015, child cooperation and successful visits. Thus, although no single study

p. 487). Lastly, parents have reported strategies that they took the ini- examined factors explicitly as needs experienced during a medical
appointment, several needs emerged from this review. These needs
tiative to implement. See Table 3 for a summary of all facilitators.
became clear through families' reports of a number of challenges
Several of these identified facilitators may directly counter or
encountered during medical visits, as well as facilitators of positive
address the challenges identified above. For example, lack of provider
experiences, many of which help to overcome some of the challenges
understanding and capability was noted as a challenge, whereas pro-
noted. Child communication must be enabled in order for them to
viders being knowledgeable and understanding were reported as a
express their symptoms and to prevent problem behaviour. HCPs
facilitator of positive experiences (Bultas et al., 2016; Davignon
need to be knowledgeable about ASD in general, understand the
et al., 2014; Muskat et al., 2015). Parents' suggestions that HCPs slow
unique needs of the specific child, and be flexible in their approach
down in their verbal communication (Bultas et al., 2016), use visual
to examination and treatment. Finally, parents need to prepare for
aids (Johnson et al., 2014) and explain exam steps (Bultas et al.,
medical visits in advance by informing their child about the people,
2016) would likely improve perceived communication between pro-
places, and activities they will encounter.
vider and child while also making medical procedures less aversive.
Although this study focused on experiences during medical visits,
Having toys, a more sensory‐friendly environment (Kopecky et al.,
there are of course many other factors to consider. Experiences that
2013), and shorter wait times (Muskat et al., 2015) would reduce the
families have outside of medical visits likely influence experiences dur-
challenges in the medical environment, which may in turn reduce
ing visits. Children with ASD have higher rates of service utilization
problem behaviour. Thus, although parents report many challenges,
than children without ASD (Strunk et al., 2014), and parents of chil-
they also are able to identify many factors that are likely to counter
dren with ASD have a greater financial burden of health care com-
those challenges.
pared with parents of children with other special health care needs
(Cheak‐Zamora & Teti, 2015; Tregnago & Cheak‐Zamora, 2012). They
4 | DISCUSSION have higher expenditures, less adequate insurance, and greater out‐of‐
pocket expenses (Strunk et al., 2014; Zuckerman et al., 2014). This
The present review summarizes and integrates the experiences that financial burden would certainly be a strain on families. In addition,
children with ASD and their families report having in medical care set- caregivers are dedicating more time to their children's health care
tings. Despite the increasing prevalence of ASD and the high number (Liptak, Stuart, et al., 2006). They spend more time in appointments,
of interactions with the medical system, there is a relative paucity of they have more frequent appointments, and they spend considerable
studies examining these medical care‐specific experiences, with signif- time coordinating this care (Kogan et al., 2008; Liptak, Orlando,
icant limitations in the included studies (Christensen, 2016). Only 29 et al., 2006; Schieve et al., 2012). This time commitment is also a bur-
studies were identified, and all were published recently, within the den to families (van Tongerloo et al., 2015). Nonetheless, they still
past 11 years. All studies included here utilized cross‐sectional data. experience unmet needs, despite their higher rate of utilization,
In the future, prospective, longitudinal designs may help to better cap- greater expenditure, and longer time spent in medical appointments
ture the experiences of these families across the developmental tra- (Cheak‐Zamora & Farmer, 2015; Kogan et al., 2008; Kuhlthau et al.,
jectory. In addition, there was an over‐reliance of studies on parent 2016; Strunk et al., 2014; Williams et al., 2012; Zuckerman et al.,
report. Although many children with ASD do struggle with verbal com- 2014). Although having a medical home is associated with fewer
munication, greater effort should be given to obtaining child report, unmet needs (Cheak‐Zamora & Teti, 2015; Kogan et al., 2008) and
even if this requires a more flexible approach to data collection (e.g., greater satisfaction with care (Zuckerman et al., 2014), most children
allowing children to communicate by typing or using Picture Exchange with ASD do not have medical homes (Williams et al., 2012). In fact,
Communication System; Tregnago & Cheak‐Zamora, 2012). Qualita- they are less likely to have a medical home than children in general
tive, observational studies utilizing video recording may also be helpful and children with other special health care needs (Brachlow, Ness,
in examining child and parent behaviour as well as parent‐provider McPheeters, & Gurney, 2007; Kogan et al., 2008). Thus, medical care
communication more objectively. is challenging for many reasons for families of children with ASD.
The impact of ASD is extensive. This current review examined just Helpful educational resources are available to both HCPs and
one possibly challenging setting, medical care, and identified a number families. The literature base examining families' information and inter-
of both negative and positive experiences. Challenging child behav- vention needs as well as evidence‐based practices is growing. Informa-
iour, which may be evoked by the medical environment and the peo- tive articles on symptoms of ASD, co‐morbid conditions, and
ple in it, may be disruptive during visits, and impairment in coordinating care are available in publications for HCPs (e.g., Berglund,
communication may hinder understanding of the presenting problem. Huus, Enskär, Faresjö, & Björkman, 2016; Carbone, Behl, et al., 2010;
Behaviour problems may be provoked by environmental stimuli or De Ocampo & Jacobs, 2006; Scarpinato et al., 2010). Many clinical
aversive activities performed during visits. Furthermore, perceived practice guidelines have been published for HCPs, and although some
lack of physician understanding and capability as well as insufficient of these are primarily based on clinical experience rather than empiri-
communication and support may result in challenging child behaviour cal evidence, such guidelines may be a good starting point for
WILSON AND PETERSON 9

providers with limited knowledge of and experience with ASD. Guide- impairments. As indicated by the present review, there are further
lines are available for many types of care, such as procedural and peri- changes that can be made to medical environments, and examinations
operative care (Nelson & Amplo, 2009; Souders, DePaul, Freeman, & and procedures can be modified to meet child‐specific needs. Education
Levy, 2002). Many interventions have been developed and examined and training for HCPs may also help to create a more supportive envi-
empirically. For example, Chebuhar, McCarthy, Bosch, and Baker ronment for both individuals with ASD and their families and for chil-
(2013) conducted a pilot study that assessed efficacy of using picture dren and families more broadly. This review has discussed many
schedules in medical settings, and Davit, Hundley, Bacic, and Hanson suggestions made by parents to improve experiences, and the relevant
(2011) developed a Blood Draw Intervention Program to increase intervention literature is emerging. In the future, studies should utilize
compliance with venipuncture. Both studies found positive results. prospective designs and obtain information from sources of information
Furthermore, the Autism Treatment Network, a collaboration between other than caregivers (e.g., children and video recording). Future inter-
Autism Speaks and many North American academic and medical insti- vention research should test specific interventions or quality improve-
tutions, is working to develop evidence‐based practice guidelines, has ment initiatives that medical care facilities and providers could
created a patient registry, and has created a series of tool kits for use implement to address some of the parent‐reported and evidence‐based
by both providers and families (Lajonchere, Jones, Coury, & Perrin, recommendations to make medical care visits positive, successful expe-
2012). Medical institutions and their HCPs should draw from this riences for themselves, the patients with ASD whom they treat, and
growing number of empirically supported guidelines and interventions their families. Such interventions would likely not only be beneficial to
in order to provide the highest quality care for not just children with children with ASD but also may improve paediatric care more broadly.
ASD but all children.
ACKNOWLEDGEMENT
The authors would like to acknowledge Dr Peterson's Writers Work-
4.1 | Limitations
shop for their assistance with manuscript preparation.
This review is limited in scope to general medical care primarily in the
United States. The vast majority of studies included in this review CONFLIC T OF INT E RE ST
were conducted in the United States. It is important to note that
Neither author has any conflicts of interest to report. Neither authors
health care experiences of all individuals may differ greatly from coun-
received any funding for the completion of this work.
try to country. In addition, there is a growing body of literature exam-
ining families' perspectives of health care specialties, which were not
ORCID
included in the present review, such as anaesthesia (e.g., Arnold
Shelby A. Wilson http://orcid.org/0000-0002-5446-165X
et al., 2015) and dental care (e.g., Duker et al., 2017) for children with
ASD. Some studies identified similar challenges as those outlined in
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