Journal of Pediatric Nursing 55 (2020) 174–183

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Journal of Pediatric Nursing

journal homepage: www.pediatricnursing.org

Parents' experiences of affiliate stigma when caring for a child

with autism spectrum disorder (ASD): A meta-synthesis of qualitative
studies
Noor Shuhada Salleh, MSc, RN a, Khatijah Lim Abdullah, DClinP, RM, RN a,b,⁎, Tang Li Yoong, PhD, RN a,
Subhashini Jayanath, MPaeds, MD, BSc(MedSc.) c, Maruzairi Husain, MD d
a
Department of Nursing Science, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia
b
Fakultas Keperawatan Universitas Airlangga, Surabaya, Indonesia
c
Department of Paediatrics, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia
d
Department of Psychiatry, School of Medical Sciences, Universiti Sains Malaysia, Malaysia

a r t i c l e i n f o a b s t r a c t

Article history: Problem: Stigma affects not only children diagnosed with autism spectrum disorder (ASD) themselves, but also
Received 7 April 2020 people connected with them (i.e., parents, siblings). The capacity of parents to provide care is affected by the
Revised 30 August 2020 stigma they perceive. This meta-synthesis encompasses the experiences of affiliate stigma among parents of chil-
Accepted 2 September 2020 dren with ASD.
Available online xxxx
Eligibility criteria: Articles were limited to the English language, those reported on stigma experienced by parents
of children with ASD aged 2–18 years, published between 1940 and 2019.
Keywords:
Parent
Sample: PubMed, CINAHL, PsycINFO, EMBASE, Scopus and The Cochrane Library databases were searched for el-
Child igible studies. Titles and abstracts were reviewed, and twelve articles fitted the selection criteria. The texts of the
Autism spectrum disorder selected research papers were reviewed by two independent reviewers.
Stigma Results: Four common themes across parental experiences included felt stigma, enacted stigma, variations in
Affiliate stigma stigma, and contributors to stigmatizing experiences.
Conclusions: Highlighting the differences in parents' views on affiliate stigma is necessary to create awareness
about ASD and the stigma linked with this disorder.
Implications: The findings asserted that healthcare professionals, especially those in pediatric settings, and society
need to have a greater awareness of the stigma and challenges that these parents encounter as this has implica-
tions on their mental and physical health. This awareness will lead to more compassionate health care delivery
which will support them and create a better environment for families and children with ASD.
© 2020 Elsevier Inc. All rights reserved.

Background
There has been a dramatic rise in the prevalence rate of children di-
agnosed with autism spectrum disorder (ASD) in the past twenty years.
This may be due to increased recognition following changes in the diag-
nostic criteria, policy, and practice (Elsabbagh et al., 2012). Given the in-
creased prevalence of autism, this condition was chosen as the focus
area of this research. For example, the issue of public perceptions of
and adverse reactions to individuals with ASD or stigma has long been
of interest to social scientists. Stigma can be defined as the adverse effect
due to negative attitudes or bad reactions from the general public on
discredited individuals (Goffman, 2009), which often results in negative
⁎ Corresponding author at: Department of Nursing Science, Faculty of Medicine,
University of Malaya, 50603 Kuala Lumpur, Malaysia.
E-mail address: katlim@um.edu.my (K.L. Abdullah).
physical and mental health for the stigmatized individuals (Green,
2003). This situation may also be referred to as public stigma, stereotyp-
ical beliefs and prejudicial, negative attitudes by a community group or
society toward a discredited subgroup (Corrigan & Watson, 2002). Chil-
dren with ASD are often subjected to stigma and discrimination in many
different contexts (WHO, 2017).
However, it was noted that stigma not only affects those who pos-
sessed the stigmatizing characteristics, it also tends to spread to others
with whom the bearer of negative difference associates with including
close friends and family members of individuals with ASD because of
their relationship (Goffman, 2009). These close persons are subjected
to what Goffman (2009) defined as courtesy stigma, the negative atti-
tudes directed at individuals not due to their own characteristics but
rather their associations or relationships with other stigmatized individ-
uals. Stigma has been recognized as a core predictor of psychological
stress of parents of children with autism (Cantwell, Muldoon, &

https://doi.org/10.1016/j.pedn.2020.09.002
0882-5963/© 2020 Elsevier Inc. All rights reserved.
N.S. Salleh, K.L. Abdullah, T.L. Yoong et al.
Gallagher, 2015; Chan & Chan & Lam, 2018; Green, 2003; Mak & Kwok,
2010). In the case of children with ASD, parental stress may be intensi-
fied when children display socially inappropriate behavior in public
(i.e., repetitive ‘stereotypical’ movements such as spinning, hand flap-
ping, twirling, throwing tantrums, and engaging in self-destructive
acts) (Estes et al., 2013; Herring et al., 2006; Illias, Cornish, Kummar,
Park, & Golden, 2018; Lecavalier, Leone, & Wiltz, 2006; Osborne &
Reed, 2009; Tomanik, Harris, & Hawkins, 2004).
Also, in many cases, parents faced stigmas which may, in turn, cause
them to struggle to make sense of their child's conditions which led to
an increased level of stress they experienced (Illias et al., 2018; Vohra,
Madhavan, Sambamoorthi, & St Peter, 2014; Zablotsky, Kalb,
Freedman, Vasa, & Stuart, 2014). For the purpose of the meta-
synthesis, this courtesy stigma of parents is also referred to as affiliate
stigma (Mak & Kwok, 2010) to distinguish the stigma experienced by
family or affiliate members of ASD children. See Table 1 for conceptual
definitions used throughout the meta-synthesis.
A recent call for researchers to examine the effect of stigma and
courtesy stigma on parental health (Ali, Hassiotis, Strydom, & King,
2012) suggests that this meta-synthesis is timely. A qualitative study
will produce a deeper understanding of human behavior and provide
information that assists nurses to deliver holistic care while taking
into considerations other people's perspectives, values and culture.
Therefore, this meta-synthesis of qualitative studies will increase
nurses' knowledge and understanding of the different perspectives in
supporting parents in the clinical area.
Aim
To systematically identify, review, and synthesize qualitative evi-
dence of affiliate stigma, to explore and understand parents' experi-
ences of affiliate stigma when caring for a child with ASD.
Methods
Design
For a comprehensive approach, the guidelines stated in the state-
ment of Preferred Reporting Items for Systematic Reviews and Meta-
analyses (PRISMA) was utilized for reporting the different phases of
identifying studies for inclusion (Moher et al., 2009) (Supplementary
File). Enhancing transparency in reporting the synthesis of qualitative
research (ENTREQ) guidelines were then incorporated when reporting
this meta-synthesis (Supplementary File) (Tong, Flemming, McInnes,
Oliver, & Craig, 2012). The meta-synthesis involved three stages which
included 1) study selection, 2) critical appraisal followed by data extrac-
tion, and 3) interpretation and evaluation of the data reported on par-
ents' experiences of affiliate stigma when caring for a child with ASD.
Thematic synthesis was used to focus on identifying and reporting the
recurrent themes within data.
Table 1
Conceptual definitions.
Terms Conceptual definitions
Stigma The adverse effect due to negative attitudes or bad
reactions from the general public on discredited
individuals (Goffman, 2009)
Affiliate stigma / The negative attitudes directed with individuals not due
courtesy stigma to their own characteristics but rather their associations or
relationships with other stigmatized individuals
(Goffman, 2009)
Felt stigma As feelings of shame or the fear of rejection (Gray, 2002)
Enacted stigma Occurrences of obvious rejection, discrimination or
prejudice faced by stigmatized person (Gray, 2002)
175
Journal of Pediatric Nursing 55 (2020) 174–183
Search methods
A pre-planned comprehensive search of electronic databases was
performed through large bibliographic databases: BioMed Central
Journals, CINAHL Plus, PsycINFO, EMBASE, PubMed, Science Direct,
and The Cochrane Library. Also, the search of meta-synthesis of qualita-
tive studies was performed to check the existing reviews reported on
the stigma among parents of children with ASD.
A skilled librarian was consulted prior to conducting the literature
search to assist in building an inclusive search strategy and guiding
the identification of key search terms and the development of relevant
search strings.
An initial search was undertaken in October 2018 and updated in
April 2019. As search alerts were activated, every new uploaded re-
search article that was related to the review question was updated, re-
trieved, and kept for further study selection process if necessary.
Search strategy strings were developed using the synonyms of the key
terms, following Boolean operators OR/AND, Medical Subject Headings
(MeSH), wildcard “?”, truncation “*”, and filtering processes in order
to generate the highest quality relevant studies. Keywords and their
synonyms were combined to yield the search.
Keywords for the literature review included “parents”, “child”, “au-
tism”, “autistic”, “autism spectrum disorder”, “ASD”, and “stigma”. As af-
filiate stigma was not the actual language used in all the primary
sources, the general word of “stigma” was used for the literature review
to include all the possible studies which reported on the experiences of
stigma for screening. Subsequently, only studies reported on the stigma
experienced by parents were screened and included (referred to as “af-
filiate stigma”), throughout the meta-synthesis. The search term “affili-
ate stigma” was not used as the major subheading to avoid missing
articles which did not include “affiliate stigma” in their title and abstract
but included parents in their study.
The meta-synthesis was limited to English language sources from
peer-reviewed journals. A filter or limiter such as ‘peer-reviewed’ was
applied to increase sensitivity and specificity of the search. Also the
search for relevant articles was specifically filtered from the year 1940
onwards since autism was first clinically described in the 1940 (Gray,
2002). Only papers that met the inclusion criteria as illustrated in
Table 2 were retrieved.
Search outcomes
The PRISMA flow diagram details the search and selection process
(Fig. 1). The search returned 593 citations, of which 587 citations were
identified from major databases and an additional six articles were
sourced through forward and backward citation searching. Following
the removal of duplicates (n = 74), 519 unique articles were screened
by title and abstract for inclusion in the meta-synthesis (NSS). The
screening was conducted independently by the first reviewer (NSS)
and confirmed by the second reviewer (KLA) by reviewing all the ab-
stracts and then the full-text articles. A further 501 articles were ex-
cluded as they did not meet the inclusion criteria for the review
following the title and abstract. When the abstract was not descriptive
enough, or no abstract was available, the full text was read, providing
a total of 18 full text papers that were obtained and reviewed (see Sup-
plementary material). Inclusion criteria were applied to the 18 studies,
and six studies were excluded, leaving 12 studies eligible for inclusion
(see Table 3). Excluded articles were checked by the second reviewer
(KLA), and any disagreement was resolved by discussion and
consensus.
Quality appraisal and data extraction
A validated checklist for qualitative studies, the Critical Appraisal
Skills Program (CASP), was used to appraise each primary study. It
was employed as it has been used widely in previous systematic
N.S. Salleh, K.L. Abdullah, T.L. Yoong et al. Journal of Pediatric Nursing 55 (2020) 174–183

Table 2 demographic information, participants' and study characteristics. Dur-

Inclusion and exclusion criteria. ing this stage, the outcome data were extracted which comprised all
Inclusion Exclusion the texts under the headings of ‘results’ or ‘findings’ in included articles
Population/ participant
and abstracts, and they were then transferred to a data extraction form.
Parents Primary caregivers for at Not having major caregiving Data extraction was independently done by NSS and KLA.
least one child to have major responsibilities for the child
caregiving responsibility for Data analysis and synthesis
the child, (this included
biological, adoptive/foster
and step-father or -mother) Thematic analysis and synthesis of each of the study's findings were
Children Child with a confirmed ASD Other disabilities or carried out to identify important and recurrent themes, pertinent to the
diagnosis by a clinician typically developing views and opinions of the participants (Thomas & Harden, 2008). The
(psychiatrist, pediatrician or children inductive thematic analysis was incorporated (Thomas & Harden,
psychologist)
The chronological age of the Outside the inclusion age
2008), which comprised three stages that overlapped each other includ-
children with autism is range ing the line-by-line coding of the text findings in primary studies, orga-
between 2 and 18 years old nization of the coding into related areas to develop ‘descriptive’ themes,
Exposure
and construction of ‘analytical’ themes (Thomas & Harden, 2008).
ASD Autism spectrum disorder No reference to ASD Firstly, NSS coded the text findings in all included studies, line-by-
and its classification line and developed descriptive themes. Analytical themes were then
Outcomes
generated when the consensus on the data interpretation was achieved
Affiliate stigma Affiliate stigma (felt or No reference to affiliate following a lengthy discussion of the descriptive themes between the
enacted) which might stigma which might two reviewers (NSS and KLA). Subsequent studies were coded into
influence experiences, influence experiences, pre-existing concepts, and new concepts were created when deemed
thoughts, views, beliefs, thoughts, views, beliefs,
necessary.
perceptions, feelings, perceptions, feelings,
opinions, which related to opinions
psychological, emotional, Results
social, spiritual, religious or
ethnic factors demonstrated
Characteristics of included studies
by parents when caring for a
child with ASD
Twelve studies met the inclusion criteria. Nine studies were selected
Studies
through screening of records, and three additional studies were ob-
Primary studies Descriptive/exploratory, Non-primary studies
reported ethnographic, grounded (literature reviews,
tained from reference lists. Publication dates ranged between 2002
qualitative theory, phenomenological editorials, guidelines, and 2018. In total, 12 studies were included comprising a total of 256
analysis of textual cohort, narrative, action policies, reports, case participants from various socio-demographic backgrounds. Most stud-
data research studies, commentaries, ies were carried out in the US (n = 3, 25%) and Australia (n = 3,
letters, minute meetings),
25%). The remaining six studies (50%) were from Egypt, Ireland, Israel,
mixed methods and purely
quantitative studies Kenya, Pakistan and Vietnam, one from each country.
Out of 256 participants, the majority were mothers. Reported sam-
ple sizes ranged from 10 to 53 across the included studies. Study partic-
ipants included both fathers and mothers (n = 8, 67%), and mothers
reviews and is validated for review purposes. The ten items in the ap-
praisal checklist allowed for rapid and accurate evaluation as they are
suitable for different types of qualitative review (Tong, Lowe,
Sainsbury, & Craig, 2008).
Each paper was given a score out of ten based on its fulfilment of
each of the criteria (one point for fulfilling each of the ten criteria) as
in Table 4 (CASP, 2013). Studies could receive a maximum of ten points,
with higher scores indicating better quality. To ensure rigor, both re-
viewers (NSS and KLA) agreed that out of ten points, eight points and
above, will be considered high-quality studies, seven points as moder-
ate quality studies, whilst those with six points and below were rated
low-quality studies. Currently, there is no universal agreement regard-
ing the quality rating of qualitative studies and subsequent exclusion
from the reviews (Barbour, 2001). The first reviewer (NSS) conducted
the assessment, and it was then confirmed by the second reviewer
(KLA). Both the reviewers assessed each study independently to elimi-
nate subjective bias and then recorded its quality in detail. Meetings
were executed to compare the independent assessments of the included
studies. When there was a discrepancy in the reviewers' selections, dis-
cussion at meetings between the reviewers was performed until a con-
sensus on the final awarded scores was reached. If appropriate, a third-
party expert in the area was consulted.
There were ten high-quality studies, and two were of moderate
quality. Table 5 details the results of the methodological appraisal of
the studies.
The data extracted was based on an extraction form agreed upon by Fig. 1. PRISMA flow diagram of studies' identifications, screening, eligibility and selection
both reviewers. The parameters contained in the form included process.

176
N.S. Salleh, K.L. Abdullah, T.L. Yoong et al. Journal of Pediatric Nursing 55 (2020) 174–183

Table 3
Summary Characteristics of Selected Studies.

Author/year Aim Participants Study location Sampling Data collection Data Findings
methods analysis
F M T

Byrne et al. To describe the experience 2 8 10 Recruited through a Convenience Semi- structured Thematic Themes: blame and stigma;
(2018) of a sample of Irish parents positive behavioral/ interviews analysis isolation; being vigilant;
who have a child on the support group in a school- advocacy; coping with
autistic spectrum aged multidisciplinary team autism
disability service in two
counties in the Republic of
Ireland
Gobrial (2018) To gain insight into 0 14 14 Recruited from two local Purposive Semi-structured Thematic Themes: the provision of
experiences of mothers charities, a private day care interviews content inadequate education and
caring for children with center for children with analysis healthcare; stigma among
ASD in relation to early life, disabilities and ASD and a mothers of children with
resources and to address speech therapy center, both autism
the consequences of raising located in Zagazig city,
a child with ASD in Egypt Sharkyia Governate in the
north-eastern region of
Egypt
Manor-Binyamini To explore how Bedouin 0 18 18 Bedouin community, Convenience Semi-structured Thematic Themes: exclusion within
and Shoshana mothers of children with mothers living in ethnographic analysis exclusion; loneliness,
(2018) autism experiences and recognized and interviews isolated and lack of social
interpret their situation unrecognized settlements support; difficulties and
in the Negev, southern barriers to access to support
Israel services
Broady et al. To investigate carers' 6 9 15 Autism carer support Convenience Semi- structured Thematic Themes: Stigmatizing
(2017) perceptions of stigma in groups in Sydney and the interviews analysis experiences including lack
caring for a child with high South Coast regions of New of knowledge; judgment;
functioning autism South Wales. Australia rejection; lack of support
Gona et al. (2016) To explore the life – – 51 Rural-recruited through Purposive, In-depth Thematic Themes: common
challenges of raising a child neuro-assessment clinic at convenience interviews, focus content challenges including
with autism on the Kenyan Kilifi County Hospital groups discussion analysis stigma, lack of appropriate
coast, and how parents Urban-Selected through an treatment, financial and
respond to them educational assessment and caring burden; coping
resource center, Kenya strategies
Ijalba (2016) To understand experiences 0 22 22 Parent education program Convenience Phenomenological Thematic & Themes: stigmatization and
of raising a child with ASD in New York City, US interviews narrative social isolation;
in a group of Hispanic analysis preconceptions about
immigrant mothers developmental milestones
and autism; mothers;
reluctance to speak Spanish
with their children
Blanche et al. To understand the 3 12 15 Local clinics, parent support Convenience Semi-structured Thematic Themes: dealing with the
(2015) caregiving experiences of group in US interviews content diagnosis; dealing with
Latino families with analysis stigma and isolation from
children with ASD, family and community;
including daily activities, understanding the roles of
coping strategies and mothers in changing family
service utilization routines; utilizing services
Minhas et al. To explore the beliefs and 4 11 15 Rawalpindi, the district in Convenience Pakistan-in-depth Framework Themes: burden of care on
(2015) practices related to the care north-west of Pakistan interviews analysis mothers; poor awareness of
of children with ASD to India-narrative family and health
inform strategies for review of existing providers; stigma and
intervention studies discrimination, inaccessible
services
Ha et al. (2014) To explore how ASD is 6 21 27 Hanoi club and met parents Convenience, Observations, Thematic Themes: ASD culturally and
represented and managed at clinics and schools in snowball in-depth analysis socially constructed as
in the cultural, social and Hanoi, Vietnam interviews & disease; stigma and
economic contexts of online survey discrimination; limitations
Vietnam, and describe the in assessment and diagnosis
experiences of families with of ASD
children with ASD in Hanoi,
Vietnam
Gill and To ascertain whether the 0 15 15 Newsletters advertisement, Purposive, In-depth Thematic Themes: perceptions of
Liamputtong parents perceive personal networks in snowball interviews & analysis stigma; ways of dealing
(2011) themselves to be Australia diaries with stigma
stigmatized because of their
child's disability and how
they deal with the
perceived stigma
Neely-Barnes To explore public 9 2 11 South eastern US Purposive Focus groups Thematic Themes: Constructions of
et al. (2011) perceptions of autism and discussion analysis the parent and the child
parental conceptualizations with autism by outsiders;
of themselves and their the parent’ response to
children public construction; the

(continued on next page)

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N.S. Salleh, K.L. Abdullah, T.L. Yoong et al. Journal of Pediatric Nursing 55 (2020) 174–183

Table 3 (continued)

Author/year Aim Participants Study location Sampling Data collection Data Findings
methods analysis
F M T

Gray (2002) To examine the stigma
experienced by the parents
of children with high
functioning autism
Total
parents' constructions of
themselves and the child
with autism
21 32 53 Local autistic treatment Convenience Semi-structured Thematic Themes: felt vs. enacted
center, based in the interviews analysis stigma; variations in stigma
Brisbane, Australia due to different causes
256

Table 4
Quality Criteria of Critical Appraisal Skills Program (CASP).
Source taken from: CASP (2013). CASP Checklists. Critical Appraisal Skills Programme, Ox-
ford. Retrieved from http://www.casp-uk.net/casp-tools-checklists on 10th Nov 2019.
Num. Questions
1 Was there a clear statement of the aims of the research?
2 Is a qualitative methodology appropriate?
3 Was the research design appropriate to address the aims of the research?
4 Was the recruitment strategy appropriate to the aims of the research?
5 Was the data collected in a way that addressed the research issue?
6 Has the relationship between researcher and participants been adequately
considered?
7 Have ethical issues been taken into consideration?
8 Was the data analysis sufficiently rigorous?
9 Is there a clear statement of findings?
10 How valuable is the research?
only (n = 4, 33%). All of the included studies aimed to explore parental
experiences of stigma when rearing a child with ASD. Two studies ex-
clusively reported the experience of parents of children diagnosed
with high functioning ASD (Broady, Stoyles, & Corinne, 2017; Gray,
2002).
Four prominent themes emerged from the data: (felt stigma;
enacted stigma; variations in stigma; and contributors to stigmatizing
experiences) which might be considered influential when
implementing evidence-based active roles in developing and refining
services to help parents cope with stigma. The concepts of felt and
enacted stigma were chosen to distinguish and describe the experience
of stigma faced by parents when caring for a child with ASD.
having a child with the disorder (Gray, 2002). The theme of felt stigma
emerged in all 12 included studies (Blanche, Diaz, Baretto, & Cermak,
2015; Broady et al., 2017; Byrne, Sarma, Hendler, & O'Connell, 2018;
Gill & Liamputtong, 2011; Gobrial, 2018; Gona et al., 2016; Gray, 2002;
Ha, Whittaker, Whittaker, & Rodger, 2014; Ijalba, 2016; Manor-
Binyamini & Shoshana, 2018; Minhas et al., 2015; Neely-Barnes, Hall,
Roberts, & Graff, 2011). It includes two subthemes including: 1) felt
blamed or judged, and 2) felt embarrassed.
Subtheme 1.1: Felt blamed or judged
The meta-synthesis highlighted that most of the parents experi-
enced felt stigma, as a large majority of them claimed that they felt crit-
icized about their child-rearing abilities. For example, parents of
children with ASD sometimes felt blamed or judged for their child's con-
dition and disorder as reported in all of the 12 included studies (Blanche
et al., 2015; Broady et al., 2017; Byrne et al., 2018; Gill & Liamputtong,
2011; Gobrial, 2018; Gona et al., 2016; Gray, 2002; Ha et al., 2014;
Ijalba, 2016; Manor-Binyamini & Shoshana, 2018; Minhas et al., 2015;
Neely-Barnes et al., 2011). The majority of participants indicated that
others perceived them as lacking in parenting skills for not appropri-
ately disciplining their children for misbehaving.
“He just went through me: what sort of a mother are you? How can you
not discipline him?.”
[Gill & Liamputtong, 2011, p. 715]
“People end up blaming me saying that I am raising my child in a bad
way. I'm seen as an irresponsible mother. I feel ashamed of myself.”
[Gona et al., 2016, p. 5]

Theme 1: Felt stigma

“My kids are on view ...I'm judged because they are a reflection of me ...
Within this theme, parents expressed their concerns about the felt constantly judged and misunderstood.”
stigma when caring for a child with ASD. The concept of felt stigma is re- [(Tammy) (Broady et al., 2017, p. 228)]
ferred to as feelings of rejection due to guilt and embarrassment of

Table 5
Methodological quality rating of selected studies using Critical Appraisal Skills Program (CASP).

Study Quality criteria Total Quality

1 2 3 4 5 6 7 8 9 10

Byrne et al. (2018) 1 1 1 1 1 0.5 1 1 1 1 9.5 High

Gobrial (2018) 1 1 1 0.5 1 0 1 0.5 0.5 1 7.5 Medium
Manor-Binyamini and Shoshana (2018) 1 1 1 1 1 0.5 1 1 1 0.5 9 High
Broady et al. (2017) 1 1 1 1 1 0.5 1 1 1 1 9.5 High
Gona et al. (2016) 1 1 1 1 1 0.5 1 1 1 1 9.5 High
Ijalba (2016) 1 1 1 1 1 0.5 0.5 1 1 1 9 High
Blanche et al. (2015) 1 1 1 0 1 1 1 1 1 0.5 8.5 High
Minhas et al. (2015) 1 1 0.5 1 1 1 1 1 1 1 9.5 High
Ha et al. (2014) 1 1 1 1 1 0.5 1 0.5 1 0.5 8.5 High
Gill and Liamputtong (2011) 1 1 1 1 1 1 0 1 0.5 0.5 8.0 High
Neely-Barnes et al. (2011) 1 1 1 1 0.5 1 1 1 1 1 9.5 High
Gray (2002) 1 1 0 1 1 0.5 0 1 0.5 1 7 Medium

Keynotes: 1- Yes, 0.5- Can't tell/partially addressed, 0- No.

178
N.S. Salleh, K.L. Abdullah, T.L. Yoong et al.
Meanwhile, of these 12 studies, a study by Ha et al. (2014) among 27
Vietnamese parents (21 mothers and 7 fathers), explicitly added the
culture-linked finding that parents felt guilty because of the public con-
nection of the disorder with karmic belief. The Vietnamese people be-
lieve that those who engage in good behaviors will have a good
descendant, and vice versa for those who committed evil in the past
(Ha et al., 2014).
Ten Irish parents (8 mothers and 2 fathers) reported that they felt
guilty as they had not recognized the condition earlier, due to the fact
that the disorder was not evident and there was a lack of behavior man-
ifestations associated with it (Byrne et al., 2018).
Subtheme 1.2: Felt embarrassed
Five studies (Gobrial, 2018; Gray, 2002; Ha et al., 2014; Ijalba, 2016;
Minhas et al., 2015) reported that shame was another manifestation
caused by the child's publicly inappropriate behavior:
“As a mother, when a child sort of acts up… you don't want him to do it,
because it's a bit embarrassing. And you feel like it reflects on you a little
bit. I mean I'm intelligent enough to know that that's not the case, but
it's very difficult to take yourself away from the situation.”
[Gray, 2002, p.739]
Some participants in a study conducted by Gill and Liamputtong
(2011), however, indicated that they felt embarrassed and stigmatized
due to their autistic children's physical appearance and grooming stan-
dards which were low compared to other children.
“To go out somewhere is a nightmare. He can't organize his clothes and
doesn't care about grooming standards, so I guess in public it reflects
back on me as his mother….Grooming, or lack of, is an embarrassment.”
[Gill & Liamputtong, 2011, p. 715]
Theme 2: Enacted stigma
Parents, who reported having to face negative reactions from others,
indicated the possibilities of enacted stigmatization, as indicated in all
12 studies (Blanche et al., 2015; Broady et al., 2017; Byrne et al., 2018;
Gill & Liamputtong, 2011; Gobrial, 2018; Gona et al., 2016; Gray, 2002;
Ha et al., 2014; Ijalba, 2016; Manor-Binyamini & Shoshana, 2018;
Minhas et al., 2015; Neely-Barnes et al., 2011). Enacted stigma is gener-
ally defined as occurrences of obvious rejection, discrimination or prej-
udice faced by the stigmatized person (Gray, 2002). These reactions
took three forms, as indicated by parents from the studies, 1) avoidance,
2) rude comments by others, and 3) overtly hostile staring by others
(Gray, 2002).
Subtheme 2.1: Avoidance
Parents in nine studies (Broady et al., 2017; Byrne et al., 2018; Gill &
Liamputtong, 2011; Gobrial, 2018; Gona et al., 2016; Gray, 2002; Ha
et al., 2014; Manor-Binyamini & Shoshana, 2018; Neely-Barnes et al.,
2011) indicated that the most frequent enacted stigma was avoidance
or rejection. One study (Gray, 2002) indicated that the parents claimed
that they received fewer invitations to houses of others for social occa-
sions or gathering.
“Occasionally we'd ask [some] family down and we'd have a drink or
whatever, but we never got invited [back]… we never seem to be recip-
rocated. They don't say, ‘Well, come over’. So, yes, you do feel like they've
sort of judged and thought, ‘Give them a miss’.”
[Gray, 2002, p.740]
More commonly, changes in friendship and social life following a re-
jection by family and peers was noted due to the child's challenging
behavior:
179
Journal of Pediatric Nursing 55 (2020) 174–183
“My husband's family stopped inviting me to their celebrations after our
child was born. I feel alone.”
[(I, 9) (Manor-Binyamini & Shoshana, 2018, p. 409)]
“We lost our old friends. Because they didn't want to be around a
screaming child who behaved so poorly” (Betty); “We lost a lot of
friends because no one wants to hang out with people with a baby that's
screaming and yelling and bashing against the wall.”
[(Jack) (Broady et al., 2017, p. 228)]
Others also reported the rejection in places of worship by the public
sphere.
“There are those people like in a church. When they see a child moving
up and down and disturbing people, they blame the parent. Then you
are banned from church services.”
[Gona et al., 2016, p. 5]
Rejections were also reported to be directed at parents and their
children alike. Still, parents expressed a sense of personal rejection, i.e.
they felt stigmatized when their children had to endure various forms
of social exclusion in schools such as bullying and institutional neglect
(Broady et al., 2017; Gill & Liamputtong, 2011; Gobrial, 2018; Gray,
2002; Ha et al., 2014; Neely-Barnes et al., 2011).
“We are in the process of moving between schools. They accepted then
kicked out my child, and we went to other schools. I visited eight schools
in total for my daughter's primary schooling […] We [parents] know
that most of the time, they close the gates on our children. If we really
want to get in, we need a relationship or need to be able to pay many
‘fees’ and ‘requests’.”
[(Ngọc Anh, mother of 13-year-old daughter with ASD) (Ha et al.,
2014, p. 281)]
“Principals don't want our kids ...because they are too much hard work.”
[(Allan) (Broady et al., 2017, p. 228)]
“Despite that my son reaching the age he should start school, no school
offered him a place, neither at the intellectual disabilities nor the hear-
ing and speech impairment schools. Unfortunately, when I just men-
tioned that he has some difficulties, the school refused to offer him a
place! Where shall I go?”
[Gobrial, 2018, p. 5]
One mother in a study conducted by Gill and Liamputtong (2011)
mentioned that she felt private schools were more sensitive to her
needs compared to public schools. She claimed that her daughter was
able to make friends in a private school in comparison to when her
daughter was struggling to develop friendships with other children
when she moved to a public school.
In four studies, some parents noted that they were rejected by health
providers due to their child's disorder (Byrne et al., 2018; Gona et al.,
2016; Ha et al., 2014; Manor-Binyamini & Shoshana, 2018). A familiar
problem mentioned by parents was the low level of acceptance from
health service providers.
“When I met Dr. X, she said to me a sentence, ‘you should have another
birth immediately, this child seems to be ‘có cũng nhú khȏng’ (good for
nothing)’. That means my boy was ‘vứt đi’ (worthless).”
[(Bach, 39-year-old mother, accountant) (Ha et al., 2014, p. 281)]
Subtheme 2.2: Rude comments by others
Rude comments expressed by others, however, were frequently ex-
perienced by parents and much harder to ignore, as reported in seven
included studies (Blanche et al., 2015; Broady et al., 2017; Gill &
N.S. Salleh, K.L. Abdullah, T.L. Yoong et al.
Liamputtong, 2011; Gray, 2002; Ha et al., 2014; Manor-Binyamini &
Shoshana, 2018; Neely-Barnes et al., 2011).
“Sometimes I have to wait it out and try to coax her. Then you get people
coming over, ‘hey man, you can't control your child. If that was my child,
I would…’ That really bums me up.”
[Neely-Barnes et al., 2011, p. 214]
“People would say things, ‘Control your daughter!’ …[my wife] would
end up in tears coming home.” (Jack); “That child just needs a good
smack on the bum" (Carol); “Give them a clip around the ears.”
[(Peter) (Broady et al., 2017, p. 228)]
Subtheme 2.3: Overtly hostile staring by others
Another manifestation of enacted stigma reported by four included
studies was staring to some degree by others (Gill & Liamputtong,
2011; Gobrial, 2018; Gray, 2002; Ijalba, 2016). This usually happened
in a public place such as a shopping complex when the child had
displayed socially inappropriate odd behaviors.
“I have always taken my boys shopping, always… Oh it's a disaster ini-
tially. [My son] threw a jar of vegemite at an elderly old lady who smiled
at him, you know… they look at me as though I'm a mother who obvi-
ously isn't very good at being a mother.”
[Gray, 2002, p. 741]
“When we go out, people on the street stare at us in a weird way, as we
are coming from a different planet! Furthermore, a mother may take
away her child from my child because the child may like to play with
my son.”
[Gobrial, 2018, p. 7]
Overtly staring also made parents felt uncomfortable and led to so-
cial isolation.
“Because other people also don't understand, they look at you badly
(staring) if the child cries or runs. That is why I do not go to anyone's
home.”
[Ijalba, 2016, p. 7]
In a study by Gill and Liamputtong (2011), several parents of chil-
dren with Asperger syndrome encountered hostile staring and negative
reactions from the public, especially when they have a disabled parking
permit which allows them to park near the entrance of the shopping fa-
cility. They became acutely aware of the community's perception of dis-
ability, as their children with Asperger syndrome looked normal with
no profound physical disabilities.
Theme 3: Variations in stigma
Along this theme, the meta-synthesis revealed that the experience of
stigma is different due to a few concerns which influence the extent of
the stigma in parents' daily lives. It includes two subthemes, 1) the char-
acteristics of parents, and 2) the behavior manifestations.
Subtheme 3.1: The characteristics of parents
The experiences of stigma varied according to the characteristics of
parents, as noted in seven included studies (Blanche et al., 2015; Gill &
Liamputtong, 2011; Gobrial, 2018; Gray, 2002; Manor-Binyamini &
Shoshana, 2018; Minhas et al., 2015; Neely-Barnes et al., 2011). It is
due to the fact that some parents were more likely to encounter it
than others, for example, mothers were more likely to face stigma
than fathers due to their traditional role as primary caregivers
180
Journal of Pediatric Nursing 55 (2020) 174–183
(Blanche et al., 2015; Gray, 2002; Minhas et al., 2015). As a mother
commented,
“Especially if you are a full-time mum. If you are home with the children
all the time, because you are having the major effect on your child's up-
bringing. Much more than your husband is… because that's the job
you've got when you're home full time. That is your job and you're plan-
ning the children's day. You're responsible.”
[[53] (Gray, 2002, p. 744)]
Study by Gray (2002) among 53 parents of children with high func-
tioning ASD explicitly added the certainty that, although the large sub-
set of both parents experienced stigma, mothers were more exposed to
felt and enacted stigma compared to fathers. One study by Gill and
Liamputtong (2011) in Australia, among mothers of children with
Asperger syndrome (13 were married and 2 were single mothers)
found that the single mothers believed that they were more stigmatized
than those who came from an intact family. For example:
“I am a single mother, and all of his bad behavior is always attributed
back to his home life, and that was exacerbated by the fact that I am a
single mother…. I was insulted that I was the stereotypical single
mother that didn't put any values into my children, that didn't teach
them anything.”
[Gill & Liamputtong, 2011, p.715]
Also, some of the mothers noted that they experienced higher pres-
sures than mothers with typical and other disabilities children, because
of their many additional tasks when caring for a child with ASD (Gill &
Liamputtong, 2011; Manor-Binyamini & Shoshana, 2018). Moreover, it
is important to note that in a study involving 14 Egyptian mothers, by
Gobrial (2018), findings revealed that mothers who were housewives
were more likely to experience stigma than mothers with a career.
Subtheme 3.2: The behavior manifestations of the child
The manifestations of the child's autistic behavior is also been a pre-
dictor on the stigma experienced by their parents. However, in the case
of high functioning ASD, there was another distinguishing aspect of stig-
matization which arose from the fact that the disorder is not evident to
the public. This may still have a significant impact on the parent during
public encounters, as one mother in a study by Gray (2002) explained;
“I can walk through shopping center after shopping center and no one
knows my child's autistic or he's got a problem. So, if he sees a drink ma-
chine and he wants a drink, and I haven't got the right change and he
stands there… and screams, ‘I want a drink!’, it runs through my mind,
‘What must some people be thinking?’… Do you say to them the reason
he's carrying on like this is because he is autistic?… Actually, there were
times when I thought, ‘God! I wish he were Down's syndrome’, because
people would leave me alone. They would see the Down's syndrome
[and] know there was a problem.”
[[45] (Gray, 2002, p. 743)]
Interestingly, some participants in a study by Gill and Liamputtong
(2011) claimed that their children's physical grooming was more
embarrassed than their behavior in public.
“To go out somewhere is a nightmare. He can't organize his clothes and
doesn't care about grooming standards, so I guess in public it reflects
back on me as his mother….Grooming, or lack of, is an embarrassment.”
[Gill & Liamputtong, 2011, p. 715]
Theme 4: Contributors to stigmatizing experiences
Many parents were concerned that the challenging behaviors of
their child with ASD, which were socially embarrassing, were the
main reasons contributing to the stigma toward them as indicated in
N.S. Salleh, K.L. Abdullah, T.L. Yoong et al.
all 12 studies (Blanche et al., 2015; Broady et al., 2017; Byrne et al.,
2018; Gill & Liamputtong, 2011; Gobrial, 2018; Gona et al., 2016; Gray,
2002; Ha et al., 2014; Ijalba, 2016; Manor-Binyamini & Shoshana,
2018; Minhas et al., 2015; Neely-Barnes et al., 2011). Several behaviors
were characterized, such as hitting, screaming, yelling, throwing and
breaking things. The majority of the parents claimed that they had to
prevent their children with ASD from going to play with other children
as they were worried that their children would behave inappropriately.
Lack of knowledge or awareness about autism, among the general
public had also been proven to be a major contributor to stigmatizing
experiences, as noted by all but one of the studies (Blanche et al.,
2015; Broady et al., 2017; Byrne et al., 2018; Gill & Liamputtong, 2011;
Gobrial, 2018; Gray, 2002; Ha et al., 2014; Ijalba, 2016; Manor-
Binyamini & Shoshana, 2018; Minhas et al., 2015; Neely-Barnes et al.,
2011). In this sense, lower awareness about ASD had led to the unfair
treatment or acceptance and misconception of the community toward
both parents and their children. Parents also noted that it was difficult
for the public to “see” or recognize ASD, thus they agreed that they en-
dured criticism as people could not understand why their children were
behaving in a certain manner (Gill & Liamputtong, 2011).
Stigma was also reported as an addition to a lack of acceptance in the
view of not acknowledging the nature of autism in society. It was re-
ported in 11 of the included studies (Blanche et al., 2015; Broady
et al., 2017; Byrne et al., 2018; Gill & Liamputtong, 2011; Gobrial,
2018; Gona et al., 2016; Gray, 2002; Ha et al., 2014; Manor-Binyamini
& Shoshana, 2018; Minhas et al., 2015; Neely-Barnes et al., 2011),
which indicated that avoidance and rejection by the community might
eventually limit the abilities of the families to socialize.
Also, parents perceived a lower of practical support, when indicating
their experiences which were also reported in seven studies (Broady
et al., 2017; Byrne et al., 2018; Gill & Liamputtong, 2011; Ha et al.,
2014; Ijalba, 2016; Manor-Binyamini & Shoshana, 2018; Minhas et al.,
2015). Parents felt unsupported by families, friends, teachers, and
even professional frontline health providers and some parents found
that society was intolerant toward people with ASD.
Discussion
This meta-synthesis explored the parental experiences in raising a
child with ASD. Parents faced stigma in different aspects of care, thus
different themes were simultaneously generated.
Four prominent themes (felt stigma, enacted stigma, variations in
stigma, and contributors to stigmatizing experiences) emerged from
the data. The first theme was felt stigma. A large proportion of parents
in all the 12 included studies reported experiencing felt stigma, includ-
ing being blamed and experiencing the judgment by outsiders and feel-
ing embarrassment due to their children's inappropriate manner and
physical appearances. This is in line with previous studies indicating
that the issues of blame and shame are obvious features of many par-
ents' experiences. Parents' competence in handling their children is
most likely to be publicly judged (Werner & Shulman, 2015) and
where the inappropriate manners of a child with ASD threaten the abil-
ity of parents to present a picture of family normality to the public, due
to misconception about their lack of control or discipline over their child
(Penn, Kohlmaier, & Corrigan, 2000). Because of the absence of promi-
nent physical disabilities of ASD, they are often blamed as a bad parent
due to their child being disobedient (Gray, 2002; Ooi, Ong, Jacob, &
Khan, 2016). Previous studies showed that these stigmatized parents
might be blamed for inheriting the bad genes linked to the disorder
(Mak & Kwok, 2010; Wong, Mak, & Liao, 2016). This stereotypical belief
is common among traditional groups of people where they believe in
karma which associates disability as a result of wrongdoing in their pre-
vious lives. This is relatively more common in an Asian context (Illias,
Liaw, Cornish, Park, & Golden, 2016) and resonates with previous stud-
ies reported in other Asian settings such as China (Sun et al., 2013 and
South Korea (Kang-Yi, Grinker, & Mandell, 2013).
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Journal of Pediatric Nursing 55 (2020) 174–183
Feeling judged together with their children's social and behavioral
oddities, ASD can also generate an extreme feeling of embarrassment
for parents and they may be criticized for being incapable of or in-
competent in controlling and disciplining their children. This is simi-
lar to other international studies (Broady et al., 2017; Farrugia, 2009).
It was noted that people high in shame were more prone to experi-
ence stigma due to their child's disorder (Zhou, Yiting, & Chunli,
2018).
This internalization of affiliate stigma in parents' of children with
ASD can be conceptualized using the attribution theory (Weiner,
1993). According to Weiner's (1993) attribution theory, causal attri-
butions determine affective reactions to success and failure. Attribu-
tions are classified according to three causal dimensions, 1) locus of
control (internal or external), 2) stability, and 3) controllability.
Based on this theory, it explained that stigma (failure) can be attrib-
uted to the challenging behavior of the children (causal attribution),
which is internally uncontrollable and always changes over the time
(unstable). This is consistent with a study by Mak et al. (2007)
which found that controllability was negatively related to affiliate
stigma, meaning that the lower the control over the condition (as
they perceived that their child's behavior was uncontrollable), the
greater the stigma.
The second highlighted theme was enacted stigma. The meta-
synthesis found that there was, however, a subset of parents who ex-
perienced enacted stigma which often affected their social lives of
the family, as reported by previous studies (Farrugia, 2009; Kinnear,
Link, Ballan, & Fischbach, 2016). Comments and reactions from others
indicated some very prominent examples of enacted stigma. These
parents may be excluded, neglected, or humiliated by their social cir-
cles (Broady et al., 2017; Illias et al., 2016). They may also be treated
unfairly by their health professionals and teachers in the health and
educational settings, respectively (Farrugia, 2009; Zuckerman et al.,
2014). Parents were also reported to experience enacted stigma
that was directed at their parenting skills or parental abilities. This
courtesy stigma by the community exacerbated the potentially dam-
aging results of the overall experience of stigma (Broady et al., 2017;
Farrugia, 2009).
The third theme was the variation in the stigmatizing experience
which may depend on the parents' characteristics and the behavioral
manifestations of the child. Although a large subset of parents encoun-
ter stigma, two of the studies reported some differences between the
mothers' and fathers' experiences of stigma (Gray, 2002; Hartley &
Schultz, 2015). There may be several possible reasons for this. Mothers,
in general, are more likely to be the primary carers of the children with
increased responsibility on the caregiving parent. Mothers, in general,
remained the primary caregiver in an Asian context (Rejani & Ting,
2015) and were the ones who most often encountered the public in sit-
uations when their children misbehaved especially in school and in the
neighborhood (Ozgur, Aksu, & Eser, 2018). This would be likely in the
case of homemakers (Gray, 2002). Ozgur et al. (2018) examined the
quality of life of mothers with children with ASD and found a higher
quality of life scores in working mothers. This may be attributed to the
fact that working mothers may share child-rearing responsibilities
with their partners. The behavioral manifestations of the child also
had a role in the stigma experienced by their parents. Parents of chil-
dren with aggressive behaviors that were prominent during public en-
counters were more stigmatized (Lee, 2009).
The fourth theme was the contributors to stigmatizing experiences
that emerged from all the appraised studies. The presence of challenging
behaviors of the children with ASD was noted to be a major influence to
stigmatizing experiences, as suggested by numerous studies (Chan &
Lam, 2017; Werner & Shulman, 2015). Many parents reported that
their child's socially embarrassing behaviors contributed to stigma
(Kinnear et al., 2016). This situation leads to both felt and enacted stigma.
Lack of knowledge or awareness about ASD among the general pub-
lic was perceived to be a major cause of stigma. As with this, it was
N.S. Salleh, K.L. Abdullah, T.L. Yoong et al.
perceived through seemingly negative judgment within the child's fam-
ily and extended to outsiders (Masne, Nor Afifi, Hany Naziha, Chai, &
Noorashikin, 2017). The lack of knowledge about ASD was exemplified
by several parents who expressed that the public viewed their children
as disobedient and naughty (Gray, 2002). Although most often they are
acting out due to their impairments in expressive abilities and unable to
cope in overwhelming situations. The perception of being judged as bad
parents, however, made these parents feel stigmatized. Many parents
suggested that the public should be more willing to learn and under-
stand ASD. Moreover, stigmatization was intensified by an extension
of lack of acceptance from the public, which leads to limited support
within the social circles of the family. This situation was found to help
explain the public's negative reactions and stigmatization of children
with ASD and their families (Masne et al., 2017). Research by Foronda
(2000) reported that parents indicated struggles with wider society
due to lack of acceptance, and this lowered the social support from fam-
ily members, especially, spouses' relatives (in-laws). These struggles
then impacted how they dealt with their child and their more extensive
relationships. The worst cases occurred in schools and health institu-
tions, where feelings of rejection were reported to be directed to them.
Implications for future research and recommendations
A systematic, extensive search of multiple major databases was car-
ried out to locate all the relevant qualitative literature meeting the
predetermined inclusion criteria. The meta-synthesis has been as inclu-
sive as possible in terms of the period of literature covered and popula-
tion included (diversity in parents from different ethnic backgrounds),
with no geographical restrictions. This meta-synthesis involved infor-
mation synthesis from a large sample of parents across countries and
continents. This has resulted in a comprehensive meta-synthesis cap-
turing a wide range of perspectives resulting in a more in-depth under-
standing of parents' experiences of stigma. Also, the authors' use of the
PRISMA and ENTREQ checklists assisted in the meta-synthesis and anal-
ysis of the data sources.
Thematic analysis is deemed useful as a tool to evaluate and synthe-
size qualitative evidence. The strengths of qualitative synthesis include
the potential of developing conclusions based on common ideas identi-
fied in heterogeneous studies. Eventually, this can provide evidence
about particular issues. For instance, certain primary studies noted the
stigma experienced by parents when dealing with their children with
ASD. Interestingly, when the findings were combined, more evidence
of this issue was revealed, as highlighted in this meta-synthesis.
Future studies pertaining to parental quality of life when caring for a
child with ASD are needed. There is a need for studies in more culturally
and ethnically diverse populations to explore differences in perceived
stigma as parents' experiences of stigmatization may differ according
to social circles (Broady et al., 2017; Illias et al., 2016), or health and ed-
ucational settings (Farrugia, 2009; Zuckerman et al., 2014). Studies that
focus on affiliate stigma among fathers should be considered, as fathers
also play a vital role as caregivers and should not be underrepresented.
This will generate deeper insight and understanding of how stigma af-
fects both fathers and mothers differently. Thus, intervention strategies
can be adapted to address any differences in perceived stigma of
mothers and fathers. Furthermore, studies that explore parental coping
strategies when facing stigmatizing experiences as well as nursing in-
terventions to support parents of children with ASD will further deepen
our understanding of this issue.
Limitations
As the included articles were restricted to the English language, sim-
ilar potential studies reported in other languages were consequently not
retrieved and appraised. So, the findings reported may have been sub-
ject to English language publication bias, and also may leave room for
study selection bias.
182
Journal of Pediatric Nursing 55 (2020) 174–183
Additionally, reporting bias may have taken place since only findings
pertinent to the meta-synthesis aims have been presented (Cochrane
Bias Methods Group, 2013). It is possible that the previous authors
may have selected to report only those themes they deemed to be piv-
otal. Hence, it is an attempt to minimize the risk of such error, the sec-
ond reviewer cross-checked the extracted data.
Further primary research is required because understanding and
management of ASD may vary between people, across settings. There-
fore, it would be beneficial to include groups that are currently under-
represented, such as those with diverse socio-economic backgrounds
and those from ethnic minorities, particularly in low and middle-
income countries.
Conclusion
The current meta-synthesis identified themes related to parental ex-
periences of stigma when caring for a child with ASD. It offers some in-
sights into the evidence that the community needs to recognize the
stigma and challenges that parents of these children endure on a day-
to-day basis. The findings from this meta-synthesis seem to indicate pa-
rental views on affiliate stigma and the need to create understanding
about ASD. It is hoped that this meta-synthesis findings will inform
healthcare professionals, especially the ones who work with the child
and their families, in terms of the need for psychological and emotional
support for this population. The provision of timely, sufficient, and con-
tinuous support is crucial in empowering parents to adapt to the life-
time diagnosis of autism, which can be addressed by ensuring
improvements in public awareness, policy making, and health care
practices. Future studies are needed to examine other issues that may
influence parents' experiences of stigma as recognition of parental per-
ceived stigma is crucial to ensure holistic care. It is also critical for en-
couraging resourceful and necessary services that can be offered by
pediatric nurses to the family.
Implications for nursing practice
It is imperative that pediatric nurses develop effective intervention
strategies and programs to assist parents overcoming parental experi-
ences of stigma, supporting them when facing stigmatizing experiences
and providing parents with better emotional and psychological prepa-
ration when dealing with their children. This can also be extended to
parents of children with other developmental disabilities. In fact, pedi-
atric nurses play a fundamental role in helping children with ASD and
their families by developing a therapeutic relationship with them. This
is facilitated by allowing parents to express their feelings, provision of
accurate and truthful information, and emotional support. These initia-
tives minimize the burden and help parents feel more confident in their
support of their children. In conclusion, we assert that pediatric nurses
need to fully appreciate and comprehend the stigma and challenges
these parents face to provide appropriate long term care and support
for parents throughout their therapeutic journey with their children.
Pediatric nurses should have knowledge about strategies of stigma re-
duction which can help in the development of appropriate and relevant
supportive interventions and information.
Declaration of Competing Interest
The authors declare no actual or potential conflicts of interest with
respect to the research, authorship, and/or publication of this article.
Acknowledgement
NSS is supported by the Ministry of Higher Education Malaysia and
Universiti Sains Malaysia through the Academic Staff Training Scheme
(ASTS).
N.S. Salleh, K.L. Abdullah, T.L. Yoong et al.
Appendix A. Supplementary data
Supplementary data to this article can be found online at https://doi.
org/10.1016/j.pedn.2020.09.002.
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