Rough Draft Qualitative Research Critique and Ethical Considerations
tommy man
ARTICLE2AUTISM.pdf
Article
Africa Journal of Nursing and Midwifery https://doi.org/10.25159/2520-5293/6192
https://upjournals.co.za/index.php/AJNM/index ISSN 2520-5293 (Online) Volume 22 | Number 2 | 2020 | #6192 | 14 pages © The Author(s) 2020
Published by Unisa Press. This is an Open Access article distributed under the terms of the
Creative Commons Attribution-ShareAlike 4.0 International License
(https://creativecommons.org/licenses/by-sa/4.0/)
Caring for Children Diagnosed with Autism Spectrum Disorder: Caregivers’ Experiences
Nomfundo Mazibuko
https://orcid.org/0000-0003-3365-5890
University of Venda, South Africa
Hilda N. Shilubane
https://orcid.org/0000-0002-6121-0488
University of Venda, South Africa
Solomon B. Manganye
https://orcid.org/0000-0002-4060-471X
University of Venda, South Africa
Abstract
Although awareness about autism has increased in developed countries, more
so than in developing countries, autism spectrum disorder (ASD) remains
poorly understood by most South Africans, especially those in remote areas and
in areas where research is limited. Furthermore, intervention services are often
scarce or not available due to lack of knowledge amongst healthcare
professionals. The current study aimed to explore caregivers’ experiences of
children with ASD in the Ehlanzeni District, Mpumalanga, South Africa. The
study adopted a qualitative approach, and data was collected using semi-
structured interviews, in which an interview guide was used. Twelve
participants were selected purposively from the three different schools in the
Ehlanzeni District and interviewed for the study. The data was analysed using
thematic content analysis. The study adhered to ethical considerations. The
findings of the study indicated that caregivers of children diagnosed with ASD
experienced psychological stress; social stress; financial burden; lack of family
support; and reported unavailability and accessibility of services. Therefore,
information regarding a range of inexpensive interventions and educational
programmes should be available for caregivers in order to reduce their
psychological and social stress. Medicines should be available and accessible
within the district to avoid caregivers having to travel long hours to access them,
and to reduce their financial burden. Caregivers’ support groups should also be
established.
Mazibuko, Shilubane and Manganye
2
Keywords: autism; autism spectrum disorder; caregivers’ experiences; children
Introduction and Background Information
Autism spectrum disorder (ASD) is a neuro-developmental disorder which is
characterised by impaired communication, repetitive behaviours, impaired social
functioning and restrictive interest (DePape and Lindsay 2015). The number of children
diagnosed with ASD (hereafter children with ASD) is increasing worldwide and South
Africa is no exception (Mthimunye 2014). ASD can be stressful for both the child and
the caregiver, particularly the caregiver. A caregiver can be defined as a person who
looks after a sick, elderly or disabled person on a regular basis, and can be either a
family member or a paid individual (Van Rooyen 2016). In the current study, a caregiver
is an individual who is responsible for providing day-to-day care to a child diagnosed
with ASD. Caregivers’ whole lives change completely and a normal day to them will
comprise of a structured and set routine that they have to adhere to on a day-to-day basis
(Mthimunye 2014). Apart from the stress experienced, caregivers of children with ASD
also have to deal with stigma and public isolation because of the children’s behavioural
problems (DePape and Lindsay 2015).
Caring for children with ASD comes with higher demands, and requires more time,
effort and patience than caring for children who do not have ASD, which at times is
strenuous for caregivers. All these might lead to the caregivers experiencing
psychological and mental health problems, such as stress, anxiety and depression
(Hoefman et al. 2014). Financial problems might also arise, as some of the caregivers
may be unemployed or not earning enough income to sustain the child’s health, which
requires constant treatment from a health specialist. However, knowledge of the
caregivers’ experiences could perhaps result in the development of strategies and
appropriate services that could ease their burden of caring for a child with ASD
(Hoefman et al. 2014).
Gona et al. (2016) state that although awareness about autism has increased in developed
countries, more than in developing countries, ASD remains poorly understood by most
South Africans, especially those in remote areas and in areas where research is limited.
Mthimunye (2014) reported that since the African community still believes that this
condition occurs among western communities, this could contribute to further isolation
of families with ASD children. Healthcare facilities lack a significant number of trained
professionals to provide care and support to caregivers upon diagnosis. This is a major
problem in public healthcare facilities. Society may also stigmatise the condition
because of poor knowledge, which makes it even more challenging for the caregivers
(Mthimunye 2014).
According to Gona et al. (2016), the prevalence of ASD in African countries is still
unclear. As a result, it is quite difficult to estimate the number of children diagnosed
with ASD in low- and middle-income countries, more especially African countries. This
Mazibuko, Shilubane and Manganye
3
is because knowledge and awareness is still low, leading to late diagnosis (Bakare and
Munir 2011). Chambers et al. (2017) demonstrated that there are no prevalence studies
for ASD in South Africa due to lack of standardised screening and diagnostic tools.
Furthermore, Malcolm-Smith et al. (2013) state that intervention services are often
scarce or not available at all which could further increase the caregivers’ stress levels.
Problem Statement
The researcher (who is the first author) once volunteered as a school counsellor at one
of the schools for children with special needs in the Ehlanzeni District, Mpumalanga,
South Africa. During her tenure as a volunteer, she observed that the teachers who are
trained on how to deal with children with ASD were struggling to cope with them in
class. Furthermore, these children were exhibiting violent behaviour because they could
not express their feelings and needs due to deficits in their communication skills.
According to Prata, Lawson and Coelho (2018) and Roughan, Parker and Mercer
(2019), interventions, such as the psycho-education programme for parents with
children with ASD, are crucial to increasing parents’ understanding of ASD as well as
helping them develop practical strategies to manage their children. Further, the
programme teaches parents how to modify the environment around their children and
implement ASD specific strategies to manage their children’s behaviour which in turn
has a positive impact in reducing aggressive behavioural problems. There is scarcity of
studies on caregivers’ experiences of children with ASD, and the few that are available
have been conducted in developed countries. The school where the researcher
volunteered is in the rural area of the Ehlanzeni District and at the time of the study had
23 children with ASD. The parents of these children were not involved in activities at
the school, which motivated the researcher to explore how caregivers handle these
children.
Aim of the Study
The study aimed to explore and describe caregivers’ experiences of children with ASD
in the Ehlanzeni District, Mpumalanga, South Africa.
Research Methodology
Research Design
A qualitative approach, using explorative, descriptive and contextual designs was
adopted to explore caregivers’ experiences of children with ASD (Creswell and
Creswell 2018). This approach and designs enabled the researcher to gain a deeper
insight into the experiences of caregivers of children with ASD and it also afforded the
researcher the opportunity to probe and observe non-verbal communication cues from
the participants during the interviews.
Mazibuko, Shilubane and Manganye
4
Study Setting
The study was conducted in the Ehlanzeni District, Mpumalanga, South Africa. The
district is one of the three district municipalities located in the North-Eastern part of
Mpumalanga and its capital city is Mbombela, previously known as Nelspruit. It has a
total population of 944 665, and most people in the district speak iSiswati.
Population and Sampling
The study population comprised caregivers of children with ASD. Three schools were
purposefully selected because they were admitting children with special needs including
those with ASD. The researcher used purposive sampling to select 12 female caregivers.
The participants were eligible for inclusion if they were caring for 5–12-year-old
children with ASD, and were residing in the Ehlanzeni District.
Data Collection
The data was collected using face-to-face interviews, with the aid of an interview guide
in order to eliminate unnecessary questions. The interview guide covered the following
key components, namely, biographic information and experience of caring for a child
with ASD. Data saturation was reached with the tenth participant. The interview guide
was developed in English, then translated into iSiswati to accommodate caregivers who
could not understand English. Fortunately, all the caregivers were literate and preferred
to be interviewed in English. The development of the guide was guided by the literature
on ASD. After development, it was pre-tested among caregivers of a similar background
to those participants who did not form part of the final study. Following the pre-test,
some questions were altered. The researcher obtained informed consent from
participants before conducting the interviews. A voice recorder was used to record the
interviews after the participants granted permission and notes were taken. The study
adhered to ethical considerations.
Data Analysis
The recorded data was transcribed verbatim. Thereafter, thematic analysis was
performed. Vaismoradi, Turenen and Bondas (2013) define thematic analysis as a
method for analysing materials of life stories and reporting patterns (themes) within
data. The researcher used the following processes as outlined by Braun and Clarke
(2006) to analyse the data: read the transcribed data several times to gain overall
meaning of the participants’ responses; generated initial codes; searched for themes;
reviewed themes; defined and named themes; and finally produced the report. The sub-
themes were supported by excerpts from the participants’ verbatim expressions.
Mazibuko, Shilubane and Manganye
5
Ethical Considerations
The University of Venda Ethics Committee issued the ethical certificate (Project no.
SHS/18/PH/08/1505). The Mpumalanga Department of Education gave permission to
conduct the study at the three schools and the principals of these schools allowed the
researcher access to the schools. The participants were informed about the study and
their rights as participants before they gave their consent to participate. They were also
assured that any information they shared would not be made readily available to anyone
else as raw data and that their identities would be protected when writing the report and
manuscripts for publication. Further, the participants were made aware that they could
discontinue at any given stage of the interview if they felt uncomfortable without any
penalty.
Trustworthiness
Trustworthiness was maintained throughout the study by using the four concepts posited
by Lincoln and Guba (1985), namely, credibility, transferability, dependability and
confirmability, adapted from Maree (2016). The researcher ensured credibility by
verbally paraphrasing the participants’ responses and having them confirm their
responses. The researcher also built a trusting relationship with the participants and
created a trusting and familiar environment. Further, the researcher asked follow-up
questions and sought clarity from the responses given. The researcher ensured
transferability by giving a brief description of the data collection method that was used.
To ensure dependability, the researcher used a voice recorder to ensure that she did not
miss any information and made use of field notes to ensure that the data was transcribed
verbatim. To ensure confirmability, the researchers compared the findings of the study
with the extant literature.
Results
Twelve female caregivers whose children were between the ages of 5–12 years and with
ASD participated in the study. The sample size was determined by data saturation. Of
the 12 participants, 10 were the biological parents of the children with ASD and were
blacks, while two were whites and had adopted the children. The participants’
demographic information was as follows: their ages ranged between 25–49 years; they
were from low- and middle-income families; six were single, five were married and one
was divorced. They were labelled P1 to P12. The theme and sub-themes that emerged
from the findings are shown in Table 1.
Mazibuko, Shilubane and Manganye
6
Table 1: Theme and sub-themes
Theme Sub-themes
1. Caregivers’ experiences of caring for
a child with ASD
1.1 Psychological stress
1.2 Social isolation and rejection
1.3 Financial burden
1.4 Lack of family support
1.5 Accessibility and availability of
services
Theme 1: Caregivers’ Experiences of Caring for a Child with ASD
Parents experience a number of challenges when caring for a child with ASD (Hoefman
et al. 2014). Caring for a child with such a disorder can be very strenuous thereby
leading to stress and poor psychological well-being for the caregiver. The study findings
demonstrated that caregivers experience a lot of challenges when it comes to caring for
and raising a child with ASD because it requires time, effort and patience. The
participants mentioned that they tend to experience psychological stress, social isolation
and rejection as well as financial burden because children with ASD have a lot of
financial needs to be catered for. Some of the participants mentioned that accessibility
and availability of health care services was a problem, while others indicated that they
did not have any support system. The sub-themes that emerged under Theme 1 are
discussed below.
Sub-theme 1.1: Psychological Stress
The participants mentioned that they experienced psychological stress when it comes to
caring for a child with ASD. Some even stated that they cannot cope with everything; it
becomes so overwhelming that they end up not coping well with their situations. The
following quotes depict how the participants experienced psychological stress:
It’s not easy, it is difficult because even now he still wears pampers and people think
I’m not training him not to wear pampers and I can’t always be explaining his situation.
That really affects me psychologically and I’m not really coping. (P4, 25)
It’s very hard because he’s constantly on my mind, he times me, so I have to rush home,
if I stop somewhere, he knows and he performs, he’s not happy that I’m late. I can’t just
be impulsive and do what I want, also I am the main purpose in his life so if I had to go
away and something happens to me, nobody will want him, nobody will understand him
the way I do, so psychologically it does play on your mind very much and you always
worried if you leave him with people, you can’t just leave him with anybody because
he’s got to be protected. (P3, 48)
In terms of psychological experience, it’s really hard, some days are good some days
are bad, especially with me and my surrounding. (P8, 32)
Mazibuko, Shilubane and Manganye
7
So psychologically I can say that it pains me because of the spectrum … they are not
really teachable, at home you want him to be independent and self-reliant. (P11, 29)
Psychologically sometimes it’s hard for me because I want him to do things like normal
kids, but he won’t even reach that point, that disturbs me a lot. Sometimes I become
very emotional and end up crying, sometimes I become stressed. (P1, 38)
Sub-theme 1.2: Social Isolation and Rejection
During the interviews, some caregivers mentioned that society neither accepts nor
understands their children. Most of the time people stare at their children and as a result
they avoid social interaction. A participant made the following important statement in
regard to this issue:
Socially I prefer staying at home because at first he can speak one or two words that you
can understand but then he starts speaking this other language that you don’t understand
and people will start staring and then they will start asking questions, as a parent you
are still struggling as well because some of the things you don’t understand, he wants
something but you don’t know what he wants and then he will start screaming and
shouting then people think you don’t discipline your child. I can’t take him anywhere
because he easily gets frustrated and people stare, it’s only family that understand … so
it’s not nice. (P5, 32)
The other unsettling issue for caregivers was lack of parental discipline when their
children are mocked and rejected by their peers. One caregiver whose child experienced
being rejected by peers said:
The problem with the children around my neighbourhood is that most of them do not
understand his condition so they ostracise him, he’s more marginalised, they don’t
accept him, they boo him, they laugh at him and that can be very disturbing even to a
parent especially when you look at their parents and see them not doing anything about
it; hence I think the parents they are also encouraging that because they are supposed to
talk to their children and say no he’s just a child, it’s just that he’s differently abled but
he’s a normal child like you … you don’t have to treat him differently. They are not
handling the situation properly so instead of me fighting with them I would rather keep
him to myself or in the house entertain him with toys, he likes phones. (P9, 47)
Sub-theme 1.3: Financial Burden
The participants outlined that children with ASD have a lot of financial needs and at
times they cannot cover all the costs. Most of the participants mentioned that their
children do not eat what other people in the house do and some of the children use
nappies because they cannot talk and do not have a sense of what is happening around
them. The participants indicated that they also spend a lot of money paying for therapists
and buying medication as some of the things are not available in government hospitals
and also their school fees is expensive, as illustrated by the following statements:
Mazibuko, Shilubane and Manganye
8
Financially it’s very taxing because to start with I’m not even happy with him being in
a government school, I feel like I’m being a bad parent, it’s just that I cannot afford to
enrol him at a private school because it’s too expensive and I won’t be able to meet all
the demands of that particular school. So that is why he’s in a government school but
really it is expensive, even the therapy sessions that I take him to, the medical aid cannot
cover all the costs I have to pay the shortfall. (P1, 38)
The thing with them is that there are specific foods that they eat so you cannot just buy
any type of food. They are very choosey and very sensitive in anything, for instance
before my son eats, he will smell whatever you give him to eat. So you need to buy the
things that he wants, you cannot just buy any food; for example, with cereals he only
eats cornflakes so you need to buy cornflakes; he doesn’t like bread and they are saying
bread is not good for them, so all those special foods are expensive and soya milk is
very expensive. So, it is very strenuous when it comes to finances. (P5, 32)
He’s still on nappies, just a pack of 13 cost R160 so that takes four days so how do we
cope financially with that? He eats non-stop everything goes to the mouth of course he’s
got his own likings and preferences so financially it’s a huge burden. (P11, 29)
Financially you really spend a lot when you have a child with autism, school fees are
expensive, there’s specific food, paying for occupational and speech therapists is
expensive, it’s just too much. (P6, 49)
Another participant added that:
Uh special food as well he didn’t eat this and now, he only eats this [gluten-free
products] so it’s costly all these gluten-free products are very expensive. (P4, 25)
Sub-theme 1.4: Lack of Family Support
One participant reported that she does not have support from her family; she mentioned
that her family members are not helping her at all. The following quote supported this
statement:
Another thing is that I’m not coping really well because I don’t get support from my
family. Uh I am neglected by my own family. I’m paying someone to look after my
child so that I can be able to go to work because my sisters want nothing to do with my
child. (P2, 48)
Sub-theme 1.5: Accessibility and Availability of Services
The participants indicated that accessibility and availability of services is a challenge in
the district. Some of the participants mentioned that at times medication for their
children is not available in public hospitals around the province and they have to go as
far as Steve Biko Hospital in Pretoria to access medication. The following quotes depict how the participants face challenges in terms of accessibility and availability of services:
Mazibuko, Shilubane and Manganye
9
Uh he’s on medication and we fetch the medication at Steve Biko Hospital, and transport
is arranged by the hospital – it’s just that he doesn’t like being in one place for too long.
So, he gets tired travelling a long distance, sometimes he throws tantrums. (P10, 32)
So right now, the government structure overlooked our children’s situation because the
schools for children with mental illnesses are not enough, it’s like they have written
them off because they think they won’t amount to anything in life which is not always
the case. (P1, 38)
… schools … I don’t think the government really understand what autism is because
yes our children are impaired, but it doesn’t mean that we write them off. (P4, 25)
Discussion
The study findings indicate that caregivers’ psychological well-being is affected as they
worry about the ASD children’s temper tantrums, which may distract alternative
caregivers. This is demonstrated by their fear of leaving the child with someone as well
as their crying. In a study on parental care-seeking pathway and challenges for ASD
children, the authors indicated that parents agreed to be experiencing stress as a result
of their children’s diagnoses (Mahapatra et al. 2019). Similarly, the caregivers in the
present study mentioned that they experienced stress as a result of people’s comments
when in public places. In addition, thinking about the future of the child also increased
the stress of some caregivers. This is in line with the findings of Al-Dujaili and Al-
Mossawy (2017), Hoffman (2012) and Lai et al. (2015), who reported that parents of
children with ASD have poorer psychological outcomes and experience higher levels
of psychological stress than parents who are caring for children without ASD.
Furthermore, it is possible that their fear could prevent them from social interaction that
might ease their stress.
The majority of children with ASD stay with family members in their communities. The
parents continue to experience social rejection and financial challenges (economic
injustice) (Bishop-Fitzpatrick et al. 2016; Howling and Magiati 2017). The caregivers
expressed their feelings when in public places with their children with ASD. Some
caregivers were unhappy with the attitude displayed by peers on their children with
ASD, more especially that parents of those children did not do anything to make them
aware that such children are differently abled and should not be criticised nor rejected.
This is in line with DePape and Lindsay (2015) who reported that parents of children
with ASD often received negative criticism from strangers when they were out in public.
Strangers believed that their children were acting out and should be disciplined.
The lack of intervention by parents made some of the participants choose to isolate
themselves and keep their children indoors because of being rejected by peers. As
Alnazly and Abojedi (2019) found and in the present study some caregivers experienced
depression as demonstrated by social withdrawal. According to Shilubane et al. (2014),
Mazibuko, Shilubane and Manganye
10
depression is a mediating factor of suicidal behaviour; therefore, the caregivers’
depressive behaviour requires immediate intervention by health professionals.
Financial difficulties were identified in all the interviews and Hoefman et al. (2014)
mention underemployment and unemployment as the cause of caregivers’ financial
problems. The caregivers mentioned that their children are selective in terms of what
they want to eat. They further indicated that the therapy sessions were very expensive
and they ended up paying the difference since medical schemes paid the approved rate
charged. The current findings are in line with Bashir et al. (2014), and Matenge (2012)
who indicated that ASD causes financial strain on families in several ways, they need
money for therapists and treatment not covered by medical schemes. The findings of
Yingling, Hock and Bell (2018) and Yingling et al. (2017) also highlighted that most
children with ASD do not access needed services due to costs and unavailability. These
authors’ findings are in line with the current findings as some caregivers mentioned that
they wanted to send their children to a better school that has resources for the benefit of
the child, but due to financial constraints they failed. This is supported by Clasquin-
Johnson and Clasquin-Johnson (2018) who indicated in their study that there are limited
options in selecting a school for a child with ASD because they are expensive.
In their study, the results of which are similar to those of the current study, Hoefman et
al. (2014) found that some family members and friends never showed any support in
their children’s situation. Similarly, Madlala (2012) indicated that parents found it hard
to cope with their children because of the poor support they were receiving from their
families. Since the family is regarded as the primary support system, and most
caregivers in the present study were single parents, either because they had never
married or were divorced, it is unsurprising that caregivers experienced psychological
stress as they had no one to lean on. This is in line with O’leimat, Alhussami and Rayan
(2019) who in their study of the correlates of psychological distress among parents of
children with psychiatric disorders, found parental psychological distress to be
significantly correlated with marital status.
The caregivers stated that it is tiring for them and their children to travel a long distance
to Pretoria for treatment. Similar results were obtained in DePape and Lindsay’s (2015)
study which found that parents experienced challenges when trying to access services
for their children with ASD and was perceived as tiring for their children since they are
not used to confined spaces. Unlike in the current study, where caregivers reported
limited government schools that cater for children with disabilities, Mahapatra et al.
(2019) indicated that services were available. Hoffman (2012) and Mthimunye (2014)
further stated that schools that accommodate children with ASD are not enough and the
few schools that are available have certain criteria for admission in which the child may
not be successful in some cases therefore, forcing them to stay at home.
Mazibuko, Shilubane and Manganye
11
Limitations of the Study
The study findings cannot be generalised because they are applicable to a specific
context with a small population and qualitative nature, which is meant only to generate
hypothesis.
Recommendations
Based on the study findings, the authors recommend that medication should be made
available at the district level to avoid caregivers travelling long distances. Furthermore,
tailor-made interventions/strategies to support caregivers should be developed. Support
groups for caregivers of children with ASD should be established. There are no studies
on experiences of caregivers in the Ehlanzeni District, therefore the current study will
provide a reference for future studies on interventions development to make care of
ASD children easier. Development of an instrument to measure caregivers’ experiences,
challenges, perceptions and behaviours or coping strategies could assist in this as a
quantitative comparison.
Conclusion
The study increased the authors’ insight into the experiences of caregivers and the
impact of caring for ASD children on their psychological being. The study reflects that
the education and the health care systems for ASD children in South Africa are not fully
developed. It is evident that community members do not have sufficient knowledge of
ASD. There is a need to conduct public awareness about ASD which could remove the
stigma and enhance acceptance of children with ASD. Furthermore, support of families
and community members could be enhanced. The fact that caregivers are not involved
in activities at schools could mean that teachers do not know what to tell them, therefore,
there is a need to empower teachers and caregivers with information on ASD and
available services. Once caregivers are well informed through counselling and
workshops, fears and anxiety could be removed. In addition, policy makers should
develop policies that will ensure fair distribution and accessibility of services to ASD
children in all the provinces of South Africa. Future studies may determine knowledge
of caregivers in the Ehlanzeni District and explore their coping strategies.
Acknowledgements
The authors are grateful to the University of Venda and the National Research
Foundation for their support. They also give special thanks to the caregivers of children
with ASD for sharing their experiences.
References
Al-Dujaili, A. H., and D. A. J. Al-Mossawy. 2017. “Psychosocial Burden among Caregivers of
Children with Autism Spectrum Disorder in Najaf Province.” Current Pediatric Research
21 (2): 272–282.
Mazibuko, Shilubane and Manganye
12
Alnazly E., and A. Abojedi. 2019. “Psychological Distress and Perceived Burden in Caregivers
of Persons with Autism Spectrum Disorder.” Perspectives in Psychiatric Care 55 (3): 501–
508. https://doi.org/10.1111/ppc.12356
Bakare, M. O., and K. M. Munir. 2011. “Autism Spectrum Disorder in Africa: A Perspective.”
African Journal of Psychiatry 14 (3): 208–210. https://doi.org/10.4314/ajpsy. v14i3.3
Bashir, A., U. Bashir, A. Lone, and Z. Ahmad. 2014. “Challenges Faced by Families of
Autistic Children.” International Journal of Interdisciplinary Research and Innovations
2 (1): 64–68.
Bishop-Fitzpatrick, L., J. Hong, L. E. Smit, R. A. Makuch, J. S. Greenberg, and M. R. Mailick.
2016. “Characterizing Objective Quality of Life and Normative Outcomes in Adults with
Autism Spectrum Disorder: An Exploratory Latent Class Analysis.” Journal of Autism and
Developmental Disorders 46 (8): 2707–2719. https://doi.org/10.1007/s10803-016-2816-3
Braun, V., and V. Clarke. 2006. “Using Thematic Analysis in Psychology.” Qualitative
Research in Psychology 3 (2): 77–101. https://doi.org/10.1191/1478088706qp063oa
Chambers, N. J., A. M. Wetherby, S. T. Stronach, N. Njongwe, S. Kauchali, and R. R. Grinker.
2017. “Early Detection of Autism Spectrum Disorder in Young Isizulu-Speaking Children
in South Africa.” Autism 21 (5): 518–526. https://doi.org/10.1177/1362361316651196
Clasquin-Johnson, M. G., and M. Clasquin-Johnson. 2018. “‘How Deep Are Your Pockets?’
Autoethnographic Reflections on the Cost of Raising a Child with Autism.” African
Journal of Disability 7: Article #356. https://doi.org/10.4102/ajod.v7i0.356
Creswell, J. W., and J. D. Creswell. 2018. Research Design: Qualitative, Quantitative and
Mixed Methods Approaches. 5th ed. Los Angeles: Sage.
DePape, A. M., and S. Lindsay. 2015. “Parents’ Experiences Caring for a Child with Autism
Spectrum Disorder.” Qualitative Health Research 25 (4): 569–583.
https://doi.org/10.1177/1049732314552455
Gona, J. K., C. R. Newton, K. K. Rimba, R. Mapenzi, F. V. Vijver, and A. Abubakar. 2016.
“Challenges and Coping Strategies of Children with Autism on Kenyan Coast.” Rural
Remote Health 16 (2): Article #3517.
Hoefman, R., N. Payakachat, J. van Excel, K. Kuhlthau, E. Kovacs, J. Pyne, and M. J. Tilford.
2014. “Caring for a Child with Autism Spectrum Disorder and Parent’s Quality Life:
Application of the CarerQol.” Journal of Autism and Developmental Disorders 44 (8):
1933–1945. https://doi.org/10.1007/s10803-014-2066-1
Hoffman, E. 2012. “Raising a Child with Autism: Exploring Family Support Structures.”
Master’s diss., Stellenbosch University.
Mazibuko, Shilubane and Manganye
13
Howling, P., and I. Magiati. 2017. “Autism Spectrum Disorder: Outcomes in Adulthood.”
Current Opinion in Psychiatry 30 (2): 69–76.
https://doi.org/10.1097/YCO.0000000000000308
Lai, W., T. J. Goh, T. P. Oei, and M. Sung. 2015. “Coping and Well-Being in Parents with
Autism Spectrum Disorder (ASD): A Review.” Journal of Autism and Developmental
Disorders 45 (8): 2582–2593. https://doi.org/10.1007/s10803-015-2430-9
Madlala, N.P. 2012. “African Primary Caregivers: Understanding and Experience of Having a
Child with Autism.” Master’s diss., University of KwaZulu-Natal, Pietermaritzburg.
Mahapatra, P., S. Pati, R. Sinha, A. S. Chauhan, R. R. Nanda, and S. Nallala. 2019. “Parental
Care-Seeking Pathway and Challenges for Autistic Spectrum Disorders Children: A Mixed
Method Study from Bhubaneswar, Odisha.” Indian Journal of Psychiatry 61 (1): 37–44.
https://doi.org/10.4103/psychiatry.IndianJPsychiatry_291_19
Malcolm-Smith, S., M. Hoogenhout, N. Ing, K. G. F. Thomas, and P. J. de Vries. 2013.
“Autism Spectrum Disorders: Global Challenges and Local Opportunities.” Journal of
Child and Adolescent Mental Health 25 (1): 1–5.
https://doi.org/10.2989/17280583.2013.767804
Maree, K. 2016. First Steps in Research. Pretoria: Van Schaik.
Matenge, B. 2012. “An exploration of the Lived Experiences of Mothers Raising Children with
Autism.” Master’s diss., University of Cape Town.
Mthimunye, B. S. 2014. “The Knowledge and Experiences of Single Mothers Raising an
Autistic Child in a Low-Income Community in the Western Cape.” Master’s diss.,
University of the Western Cape, Cape Town.
O’leimat, A. S., M. Alhussami, and A. Rayan. 2019. “The Correlates of Psychological Distress
among Parents of Children with Psychiatric Disorders.” Journal of Child and Adolescent
Psychiatric Nursing 32 (1): 24–32. https://doi.org/10.1111/jcap.12223
Prata, J., W. Lawson, and R. Coelho. 2018. “Parent Training for Parents of Children on the
Autism Spectrum: A Review.” International Journal of Clinical Neurosciences and
Mental Health 5 (3): 1–8. https://doi.org/10.21035/ijcnmh.2018.5.3
Roughan, L. A., J. R. Parker, and L. Mercer. 2019. “Improving Interventions for Parents of
Children and Young People with Autism Spectrum Disorder in CAMHS.” BMJ Open
Quality 8e000261. https://doi.org/10.1136/bmjoq-2017-000261
Shilubane, H. N., R. A. C. Ruiter, A. E. R. Bos, B. H. W. van den Borne, S. James, and P. S.
Reddy. 2014. “Psychosocial Correlates of Suicidal Ideation in Rural South African
Adolescents.” Journal of Child Psychiatry and Human Development 45 (2): 151–162.
https://doi.org/10.1007/s10578-013-0387-5
Mazibuko, Shilubane and Manganye
14
Vaismoradi, M., H. Turenen, and T. Bondas. 2013. “Content and Thematic Analysis:
Implications for Conducting a Qualitative Descriptive Study.” Nursing and Health
Sciences 15 (3): 398–405. https://doi.org/10.1111/nhs.12048
Van Rooyen, M. 2016. “The Father’s Experience: A South African Perspective on Caring for a
Child with Autism Spectrum Disorder.” Master’s diss., Stellenbosch University.
Yingling, M. E., R. M. Hock, and B. A. Bell. 2018. “Time-Lag between Diagnosis of Autism
Spectrum Disorder and Onset of Publicly-Funded Early Intensive Behavioral Intervention:
Do Race-Ethnicity and Neighborhood Matter?” Journal of Autism and Developmental
Disorders 48 (2): 561–571. https://doi.org/10.1007/s10803-017-3354-3
Yingling, M. E., R. M. Hock, A. P. Cohen, and E. M. McCaslin. 2017. “Parent Perceived
Challenges to Treatment Utilization in a Publicly Funded Early Intensive Behavioral
Intervention Program for Children with Autism Spectrum Disorder.” International Journal
of Development Disabilities 64 (4–5): 271–281.
https://doi.org/10.1080/20473869.2017.1324352
Copyright of Africa Journal of Nursing & Midwifery is the property of Unisa Press and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
