Original Article

J Nepal Health Res Counc 2018 Apr-Jun;16(39): 184-9

Perceived Burden in Caregivers of Children with

Autism Spectrum Disorder
Shrijana Pandey,1 Chandrakala Sharma2

Department of B.Sc. Nursing, Kathmandu Medical College, Kathmandu University, Kathmandu, Nepal,
1 2

Nursing Campus Maharajgunj, Institute of Medicine, Tribhuvan University, Kathmandu Nepal.

ABSTRACT
Background: Autism Spectrum Disorder is a lifelong developmental disorder that affects children and results in
deficit in social interaction, communication and display of unusual pattern of behavior. Though caregiving is a normal
parental duty, providing intensive care to a child with long-term problem is burdensome and impacts both physical and
mental health of caregivers. The aim of this study was to obtain a picture of burden among caregivers raising children
with Autism Spectrum Disorder.
Methods: We conducted a descriptive cross-sectional study to assess the burden of caregiving among sixty one parents
of children with Autism Spectrum Disorder in the Kathmandu Valley, Nepal, using purposive sampling technique. The
burden perceived by caregivers was assessed using standard tool Zarit Burden Interview-22.
Results: Average burden score was 41.49±12.25 which indicates that caregivers experienced moderate to severe
range of burden. Level of education, anxiety and depression was found to be significantly associated with burden of
caregiving.
Conclusions: The study concluded that the burden of caregiving is most remarkably associated with emotional status
and social life of the caregivers.
Keywords: Autism Spectrum Disorders (ASD); caregiver burden; Nepal; zarit burden Interview.

INTRODUCTION child’s disorder.8 As parents’ well-being could positively

influence caregiving and thus decrease the burden of
Autism Spectrum Disorder (ASD) is a lifelong care9,10 studies focusing on caregivers are necessary. The
developmental disability that includes deficits in social researchers were thus, interested in carrying out a study
interaction, communication and restricted, repetitive to assess the extent of burden perceived by caregivers
patterns of behavior, interests or activities. A child raising a child with ASD.
with ASD may show unusual interests and behaviors
and may have problems with sleeping and eating.1 In METHODS
recent years, the awareness regarding ASD has improved
globally resulting in a rise in global prevalence of ASD.2 A descriptive cross sectional study design was used to
In Nepal;no study has been done to assess the prevalence assess the burden perceived by the caregivers.The data
of ASD.3 However, a study carried out to assess the was collected at Autism Care Nepal Society and at the
psychiatric morbidity amongst children attending child residences of the caregivers as per their convenience.
guidance clinic in Nepal found that around 10% (n=539) The study population consisted of caregivers either
of the children suffered from pervasive developmental father or mother who was caring for a child with ASD.
disorder. Among these children 3.7% had a diagnosis The researchers agreed to include the caregivers
of ASD.4 Caring for children with ASD is challenging residing in Kathmandu valley who were registered at
as caregivers have to face difficulties in dealing with or were attending Autism Care Nepal Society and had
the unusual behaviors of their child, teaching them a child of upto 19 years diagnosed with ASD by either
to interact, teaching them basic life skills, protecting a psychiatrist, psychologist or a pediatrician. From the
them from danger and preparing for their transition into registration list of Autism Care Nepal Society, all the
adulthood.5-7 Due to this multidimensional requirement caregivers residing in Kathmandu Valley were sorted
of caregiving, caregivers experience tremendous stress, out and they were approached for data collection. Sixty
misconceptions, feeling of guilt and self-blame regarding one caregivers, out of around 85 registered to be living

Correspondence: Shrijana Pandey, Department of B.Sc. Nursing, Kathmandu Medical

DOI:  http://dx.doi.org/10.3126/
College, Kathmandu University, Kathmandu, Nepal, Email: srijanapdy@gmail.com,
jnhrc.v16i2.20308
Phone: +9779851177355.

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 Perceived Burden in Caregivers of Children with Autism Spectrum Disorder

in Kathmandu valley, were chosen purposively to be of the information. Data was collected using interview
included in our study. method and when both parents were present at the
time of interview, the caregiver who spent more time
The study included questions related to socio- in child care was included. Data could not be collected
demographic details of caregiver and child, general from nine of the approached caregivers. Out of around
information on ASD, psychological distress (anxiety and 85 registered caregivers contacted for the study, three
depression) and caregiver burden. The questions related caregivers denied from participation, 4 caregivers had
to socio-demography and general information of ASD was moved out of study site and remaining 2 caregivers didn’t
prepared by the researchers on the basis of extensive answer the phone.The study period was of one year.For
literature review and consultation with advisor/experts. the analysis of obtained findings, Man Whitney U was
For assessing psychological distress (anxiety and used to assess the association between variables since
depression) standardized tool called Hopkin’s Symptom the study followed non-probability sampling technique
Checklist-25 was used. A cut – off score of more than or and contained small sample size.
equal to 1.75 of the mean score was used to identify a
case of either anxiety or depression.11-13 Caregiver burden RESULTS
was assessed using Zarit Burden Interview -22 which is
composed of 22 items that reflect how a person feels Of the 61 caregivers, 58 were mothers of the children
when they are taking care of another person. The scale while the remaining three were fathers. At the time
for first twenty one questions include five categories of the interview, the mean age of the caregivers was
of responses (“Never,” “Rarely,” Sometimes,” “Quite 33.6±5.1 years and that of the children was 7.9 ±3.5
frequently,” Nearly always”, rated 0 to 4, respectively). years. Sixty- nine percentages of the caregivers had
However, the last question i.e. question number 22 attained education of above higher secondary level and
include five response categories (“not at all”, “a little”, 59.0% were unemployed (i.e. homemakers, social worker
“moderately”, “quite a bit”, “extremely” rated 0 to and student). Almost all (98.4%) had no significant family
4, respectively). Zarit Burden Interview -22 is scored history of the disorder. More than half (60.7%) of the
according to the presence or intensity of an affirmative children were admitted to schools designed for special
response, and measures the caregiver’s health, emotional children. In regard to psychological distress, 33.0% of
well-being, social and family life, finances, and the caregivers had clinically significant symptoms of anxiety
relationship between the caregiver and child.14 The total while 24.6% had symptoms of depression.
score range from 0 to 88. A total score is calculated by
the sum of all the item scores and high scores indicate Table 1. Socio-demographic characteristics.
a higher level of burden. The translation and linguistic Socio-demographic Frequency Percentage
validation of Zarit Burden Interview -22 was done characteristics
according to the directions provided by Mapi Research Expenses for the child(per month)
Trust, France. After consultation with subject expert, < 5 thousands 21 34.4
the term “your relative” in Zarit Burden Interview -22
5-10 thousands 29 47.5
was replaced by “your child” with permission from the
> 10 thousands 11 18.0
trust for its applicability in the present study.
Median = 7 thousands
In our study, the level of burden was categorized Training received
according to the scores obtained by the caregivers and Yes 48 78.7
included:Little or no burden (0 – 21); Mild to moderate No 13 21.3
burden(21 – 40); Moderate to severe burden (41 – 60);
Sex of the child
Severe burden (61 – 88). 15, 16 Reliability of the tool in terms
of internal consistency was assessed by Cronbach’s alpha Male 47 77.0
and it was found to be 0.850 for Zarit Burden Interview Female 14 23.0
-22 and 0.933 for Hopkin’s Symptom Checklist-25. Mean Age at diagnosis (in years) = 4.25±2.42
Mean Duration of diagnosis(in months) = 44.31± 34.69
Ethical clearance was obtained from concerned
Mean Hours spent in care per day = 10.04±3.90
authorities and institutional review board of Institute of
Table 1 show that almost half of the caregivers (47.5%)
Medicine (IOM),Nepal. A written informed consent was
spent 5 to 10 thousands Nepali rupees per month in the
obtained from all the caregivers included in the study.
care of their autistic child. More than three fourth of
Code numbers were used to maintain confidentiality
the caregivers (78.7%) had received some form of train-

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 Perceived Burden in Caregivers of Children with Autism Spectrum Disorder

ing about rearing a child with ASD and seventy-seven variance of 29.5% in the level of the burden perceived
percentages of the children were male. by the caregivers.

Table 2. Level of burden among caregivers (n=61). Table 3 shows that the overall burden was higher among
Level of burden according caregivers who had anxiety and depression than those
Frequency Percentage
to scores obtained who didn’t have it. Specifically, the burden was higher in
Little or no burden (0-20) 2 3.3 all of the four domains except in the domain of finances.
Mild to moderate Excluding the financial domain, the association between
29 47.5 burden in all other domains and psychological distress
burden(21-40)
Moderate to severe burden was found statistically significant.
26 42.6
(41-60)
Severe burden (61 and Table 4 shows that the caregivers with higher level of
4 6.6 education were less burdened due to caregiving than
above)
Mean Burden Score ± S.D. those with lower level and the finding was significantly
= 41.49±12.25 associated with overall burden and burden in domain of
Coefficient of variance finance and control of life. Age and employment status
=29.5% of caregivers, age and sex of the child, hours spent in
caring for the child every day and status of received
Table 2 shows that the average burden score of caregivers
training on caring a child with ASD had no significant
fell in moderate to severe category and there was a
association with burden.
Table 3. Association between psychological distress (Anxiety, Depression) and burden across different domains.
Domains of Zarit Burden Interview -22
Variables n Total Scores BR EW SF FI LC
Median Scores
Anxiety
No Anxiety 41 38.0 10.0 11.0 6.0 1.0 8.0
Anxiety 20 46.0 12.0 15.0 8.0 1.0 10.0
†p value 0.004* 0.032* 0.000* 0.032* 0.974 0.021*
Depression
No Depression 46 39.0 11.0 12.0 6.0 1.0 8.0
Depression 15 52.0 12.0 15.0 9.0 1.0 11.0
†p value 0.001* 0.033* 0.002* 0.002* 0.699 0.001*
Higher score indicates higher burden, †: Mann Whitney U test, BR=Burden in relationship, EW=Emotional Wellbeing, SF=Social and
Family life, FI=Finances, LC=Loss of control over one’s life, *: p-value significant at ≤ 0.05

Table 4. Association between socio-demographic characteristics and burden across different domains n=61.
Domains of Zarit Burden Interview -22
Socio-demographic variables n Total Score BR EW SF FI LC
Median Score
Age (years)
≤ 35 43 39.0 11.0 13.0 7.0 1.0 10.0
>35 18 44.5 12.5 14.0 7.0 0.0 8.0
†p value 0.350 0.164 0.317 0.479 0.121 0.787
Educational Status
Less than secondary or secondary 19 46.0 12.0 14.0 8.0 2.0 11.0
Higher secondary and above 42 39.5 11.0 12.5 6.0 0.0 8.0
†p value 0.024* 0.567 0.090 0.095 0.004* 0.004*
Employment status
Unemployed 36 40.5 11.0 13.5 7.0 1.0 9.0

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 Perceived Burden in Caregivers of Children with Autism Spectrum Disorder

Employed 25 40.0 11.0 13.0 7.0 1.0 9.0

†p value 0.918 0.929 0.860 0.959 0.574 0.718
Age of child (years)
0-10 48 40.5 11.0 13.0 6.5 1.0 9.0
10-19 13 40.0 12.0 13.0 7.0 1.0 9.0
†p value 0.412 0.972 0.536 0.430 0.542 0.193
Sex of child
Male 47 41.0 11.0 13.0 7.0 1.0 9.0
Female 14 40.0 10.5 14.0 5.5 0.0 8.5
†p value 0.577 0.575 0.535 0.173 0.107 0.427

Higher score indicates higher burden, †: Mann Whitney U test, BR=Burden in relationship, EW=Emotional Wellbeing, SF=Social and
Family life, FI=Finances, LC=Loss of control over one’s life, *: p-value significant at ≤ 0.05

DISCUSSION significantly associated with burden which hints that

handling a child with ASD is difficult for caregivers of
The children included in our study belong to school any age. Most of the literature reviewed has also shown
age group which is in line with the findings from other that age has no significant association with burden. 5,26
studies in which the mean age of the child lied in the However, another study carried out in Canada revealed
same age group.16-21 The male is to female ratio in our that parental age was associated with feeling of
study was found to be 3.4:1 which is supported by the burden with older parents reporting greater burden.27
findings obtained from other studies in which the ratio This dissimilar finding might have occurred because of
ranged from 2.3:1 to 3.3:1.17,22,23 Various other studies differences in sample size and social values of Nepal and
carried out worldwide have found that the male is to Canada.In our study, level of education was found to be
female ratio is as large as 5:1.18 These finding suggest significantly associated with overall burden and burden
that significantly greater number of male children in in finances and control of life. The caregivers with
our study suffer from ASD when compared to female. higher level of education were found to experience less
Our study found that mean age of diagnosis of ASD range burden than those with lower level. The results is similar
from 1 to 13 years which can be compared to the findings to the findings obtained from other studies in which
obtained from another study carried out in Nepal in it has been found that objective burden like impact of
which it was found that the age of diagnosis ranged child’s disability on mother’s finance, work, social and
from 1 to 15 years.20 While comparing these two studies, recreational activities decreased with increased years of
it can be seen that the maximum age of diagnosis has education.26 Our study shows that status of employment
decreased which might be because of the increasing was not significantly associated with burden which could
awareness of ASD in Nepal. be due to the fact that most of the caregivers were
either homemakers or worked at Autism Care Nepal
Our study showed that, on average, caregivers Society where they could take their child along with
experienced moderate to severe burden which is in themselves and leave them with supervisors present
line with the findings obtained in a study carried out in at the day care center of the institution. The finding is
Nigeria.21 Our study also showed that around one third of consistent with the results obtained from other studies
the caregivers were anxious while similar number were in which it has been reported that occupational status
depressed. The finding is supported by other literature doesn’t affect the perception of burden.15,28 However,
reviewed in which one third of the caregivers of children another study conducted by Green26 reported that
with ASD had psychological distress which is mainly due working mothers experienced higher burden due to the
to long term challenges of caregiving associated with exaggerated demands of the child and challenging job
ASD.23,24 Similarly, a study carried out in Saudi Arabia responsibilities. This diverse finding might have occurred
revealed that parents/caregivers of children with ASD because of socio-economic differences between the two
have higher incidence of overall anxiety and depression societies.
due to the burden posed by the challenging child care
demands.25 Our study shows that age and sex of the child has no
significant association with burden perceived by the
Our study showed that age of the caregiver is not caregivers. This might be because in every age of the

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 Perceived Burden in Caregivers of Children with Autism Spectrum Disorder

child there would always be some unique challenges to understand complex issues like feeling of burden
associated with caregiving which is similar for either and psychological distress among caregivers of children
a boy or a girl child. These results are similar to the with ASD as these findings might be useful to identify
findings obtained from some other studies in which it has the areas that are affected by the burden of long term
been found that age or sex of child doesn’t affect the caregiving process and would help in understanding the
feeling of burden.15, 26-28 feelings, beliefs, opinions and experiences of parents.
Insights from the study would help in developing
Likewise, our study showed that the duration of interventions focusing the needs of children with ASDs
diagnosis and status of training received has no and their family.
significant association with burden of caregiving which
is supported by the study carried out by Dada et al.,15 ACKNOWLEDGEMENTS
and Divan et al.,29 in which duration from diagnosis was
not found to change the feeling of strain and worry The authors thank all the caregivers who participated
about the child’s future. Moreover, in our study, status in this study, Autism Care Nepal Society and Nursing
of received training and hours spent on child care was Campus, Maharajgunj, Kathmandu, Nepal.
not significantly associated with burden which is in
accord with the study findings of Hastings and Johnson7
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