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Psychological distress and perceived burden in caregivers of persons with

autism spectrum disorder

Article  in  Perspectives In Psychiatric Care · February 2019

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Received: 16 April 2018 | Revised: 19 August 2018 | Accepted: 6 January 2019

DOI: 10.1111/ppc.12356

ORIGINAL ARTICLE

Psychological distress and perceived burden in caregivers of

persons with autism spectrum disorder

Eman Khamis Alnazly PhD1 | Amjed Abojedi PhD2

1
Faculty of Nursing, Al‐Ahliyya Amman
University, Amman, Jordan
2
Family Service Thames Valley, Counselling &
Psychological Statistician, Associated
Professor of Psychotherapy and Counselling &
Psychological Assessment, Registered
Psychotherapist, RP, CCC, London, ON,
Canada
Correspondence
Eman Khamis Alnazly, Associate Professor,
Department of Nursing, Al‐Ahliyya Amman
University, Amman 19328, Jordan. E‐mail:
emanalnazly@hotmail.com
Abstract
Purpose: To investigate psychological distress among parents of children with autism
spectrum disorder and the associated sociodemographic factors influencing parents’
distress.
Design and Methods: A cross‐sectional design with a sample of 123 Jordanian
parents providing care to children with autism spectrum disorder was used. A
sociodemographic questionnaire, the Oberst Caregiving Burden Scale, the Bakas
Caregiving Outcomes Scale, and the Hospital Anxiety and Depression Scale were
utilized for data collection.
Findings: Parents reported moderate levels of burden, negative life changes, and
borderline depression and anxiety. The perceived burden related to caregiving task
difficulty positively correlated with that related to time spent on tasks and negatively
correlated with caregivers’ caregiving‐related outcomes. The perceived burden of
caregiving tasks was negatively correlated with depression and anxiety and anxiety
levels were positively correlated with depression (P < 0.001).
Practice Implication: Healthcare providers, advanced practice nurses, and policy
makers should be aware of the burden, anxiety, and depression experienced by
caregivers of children with autism spectrum disorder.

KEYWORDS
anxiety and depression, autism spectrum disorder, caregiving outcome, parental burden,
psychological distress

1 | INTRODUCTION
Autism spectrum disorder (ASD) is a developmental disability
characterized by deficits in social communication and interaction
across multiple contexts. Furthermore, ASD causes significant
behavioral challenges.1 Children with ASD have poor general health
and slow growth and often present with co‐occurring physical and
2
psychological disabilities.
The parents’ burden is affected by the disruptive behaviors
of individuals with ASD and by financial issues, changes in
social relations, poor physical health, lack of social support,
changes in daily routine, and poor ability to cope with
3
stress.
Perspectives in Psychiatric Care. 2019;1–8.
ASD has profound impacts on the lives of family members includ-
ing the roles and responsibilities assumed in caring for individuals
with ASD.4 Caring for children with ASD is associated with a higher
incidence of parental stress, anxiety, and depression than caring for
children with other developmental and physical disabilities and
affects marital relationships and family functioning.1 In addition to
experiencing several economic, physical, social, and psychological
burdens,4 parents of children with ASD often report poor psycho-
logical wellbeing.5,6
Research studies conducted in the Arab countries have shown
that the parents of children with ASD do experience caregiver
burden1,3,6. Moreover, they are at an elevated risk of developing
depression and anxiety despite the culture of shared family
wileyonlinelibrary.com/journal/ppc © 2019 Wiley Periodicals, Inc. | 1
2 |
responsibilities.3 Parents of children with ASD were found to have
high depression and anxiety scores that were not affected by the age
of the child, parent’s sex, number of family members, or support
offered.1 Dardas and Ahmad3 found that Jordanian parents caring for
children with ASD have high levels of stress as well as poor physical
and psychological health with mothers having lower scores. The
physical and psychological strain resulting from caring for children
with ASD for long periods of time spills over into other aspects of the
parents’ life. However, the limitation of those studies is that they
focused only on coping and quality of life but not the fuller range of
caregiver burden and outcomes that the Oberst and Bakas scales
measure. This study sought to investigate the caregiver burden,
caregiving outcome, anxiety levels, and depression levels in Jorda-
nian parents caring for children with ASD. The study also sought to
determine the factors associated with parents’ burden, anxiety,
depression, and caregiving outcomes. Establishing these associated
factors will enable the development of strategies aimed at preventing
or minimizing the effects of caregiving distress on parents. This study
will therefore determine whether parents in Jordan caring for
children with ASD experience psychological distress and what the
associated factors are.
The aims of the current study were to investigate the
psychological distress (burden, outcome, anxiety, and depression)
levels of parents of children with ASD and to investigate the
sociodemographic factors that influence parents’ distress.
2 | MATERIALS AND METHODS
2.1 | Participants
A convenience sample of mothers or fathers who provide direct care
to children with ASD who met the inclusion criteria were invited to
participate in the study. The inclusion criteria were as follows: (a) is
able to read the questionnaires, (b) is an unpaid family member who
helps the patient at home with self‐care activities, (c) is 18 years of
age or older, (d) has a child attending a Child Development Center,
and (e) is willing to complete the questionnaires.
A list of Child Development Centers serving children with ASD
that were eligible to participate in the study was prepared. The first
researcher sent letters to the directors of three Child Development
Centers in Amman detailing the research proposal. The research
proposal stated the purpose of the study, the importance of the
research project outcomes to both parents and children with ASD,
and the length of the study. After receiving the directors’ approval to
participate, two assigned teachers from each center volunteered to
be part of the research team and to provide care for children with
ASD. The teachers approached potentially eligible parents during the
child’s regular day at the Child Development Center and asked them
if they would be interested in participating in a parental burden
study. A list of the names of the parents who agreed to participate
was given to the main investigator. The main investigator contacted
the parents by phone and made appointments for future meetings in
ALNAZLY AND ABOJEDI
the conference rooms of the participating Child Development
Centers.
A sample size calculator was used to calculate the recommended
sample size given a 5% margin of error and 0.95 confidence level.7
The recommended sample size from three centers with a total
population of 170 students was 119 participants, with approximately
40 participants from each center participate in the study. Of the 140
approached parents, 123 agreed to participate.
2.2 | Procedure
The internal review board’s of each hospital’s approval was in
accordance with the ethical standards of the committee in charge of
human experimentation and with the Declaration of Helsinki as
revised in 2000. At the first meeting, the main investigator explained
the study’s purpose to the participating parents, and they were all
assured that confidentiality would be maintained. The researcher
explained that their participation in the study was for scientific
research purposes only and that there would be no benefit or
harm from participating in the study. The researcher emphasized that
the participants had the right to drop out of the study at any time and
that only the overall results would be shared with the public for
future research purposes.
Participating parents signed informed consent forms and com-
pleted the sociodemographic form; each of them was also given an
envelope containing the Oberst Caregiver Burden Scale time and
difficulty subscales (OCBS‐T and OCBS‐D), the Bakas Caregiving
Outcome Scale (OCBS), and the Hospital Anxiety and Depression
Scale (HADS). The parents completed the questionnaires at their
homes and dropped them in a box located in the Center. The
estimated length of time needed to complete the questionnaires was
20 minutes.
2.3 | Parental burden
2.3.1 | Oberst caregiving burden scale difficulty and
time subscales
The OCBS is a reliable and valid 15‐item scale designed to assess
15 different types of caregiving tasks based on perceived
difficulty level and time spent executing the task.8 Each item is
scored on a 5‐point Likert scale. The responses to the difficulty
subscale are 1 = Not difficult; 2 = Slightly difficult; 3 = Moderately
difficult; 4 = Very difficult; and 5 = Extremely difficult. The responses
for time spent on caregiving tasks are 1 = No time; 2 = A small
amount; 3 = A moderate amount; 4 = A large amount; and 5 = A great
deal of time. The scores for each subscale are calculated by
averaging the scores for the 15 items. The average total score
ranges between 1 and 5. A score above three indicates moderate
to severe burden in relation to task difficulty and time spent.8 The
internal consistency alpha coefficient for previous studies was
0.913 and 0.938 for the OCBS‐T and OCBS‐D, respectively9;
however, for this study, it was 0.78 and 0.73, respectively.
ALNAZLY AND ABOJEDI
2.3.2 | Bakas Caregiving Outcomes Scale
The Bakas Caregiving Outcomes Scale is a 15‐item scale that
addresses changes in “social function,” “subjective wellbeing,” and
“health specifically” as a result of caring for a family member.10 The
items assess caregivers’ response to the extent of life changes for the
worse or for the better on a 7‐point scale on which 1 = “change for the
worse”; 4 = “no change”; and 7 = “change for the better”. The original
scale is scored from −3 to 3, with 0 indicating no change. A score
greater than 0 is indicative of a positive change in the caregiver’s life
as a result of caregiving, that is, no burden. A score less than zero
indicates negative caregiving outcomes, that is, caregiver burden. The
score here is converted on a scale ranging from 1 to 7 with four being
the response equivalent to 0 because positive numbers facilitate
statistical analysis. The advantage of this scale over other scales is its
ability to measure positive changes in the lives of caregivers as a
result of providing care to family members.10,11 The Cronbach’s α in a
recent study was 0.949while the Cronbach’s α in this study was 0.82.
2.3.3 | Hospital Anxiety and Depression Scale
The psychological distress of parents of children with ASD was
measured using the HADS. The HADS is a screening tool used to
identify depression and anxiety among caregivers. The scale has been
used in community and primary caregiver samples and in research on
individuals who need psychiatric evaluation.12 The total number of
items is 14. Seven items evaluate depression (HADS‐D), five of which
measure anhedonia and two concern feelings of slowing down. The
anxiety subscale (HADS‐A) contains seven items; two items are
concerned with autonomic anxiety and five items assess tension and
restlessness. Respondents score how they felt during the past week
on a scale of 0 to 3 (3 indicates higher symptom frequency). The total
score for each subscale (anxiety or depression) ranges from 0 to 21: 0
to 7 = Normal, 8 to 10 = Borderline, and 11 to 21 = Abnormal.13 A
higher score is indicative of greater caregiver distress.14 The internal
consistency alpha coefficient in previous studies was 0.73 and 0.77
for the HADS‐A and HADS‐D,15 0.78 and 0.87 in a study conducted
on ASD caregivers/parents1 and 0.8 and 0.81, respectively, in this
study. The Cronbach’s α values for this study were 0.78 for anxiety
and 0.80 for depression.
2.4 | Data analysis
Data analyses were performed using the Statistical Package for the Social
Sciences (SPSS Inc., Chicago, IL) version 22 software. Parental levels of
burden, depression, and anxiety were determined using descriptive
statistics. The descriptive statistics were computed to determine parents’
and patients’ sociodemographic characteristics and expressed as the
mean (M) and standard deviation (SD) and as a percentage.
Pearson’s correlation coefficient was used to determine the
relationships between the difficulty of caregiving tasks, time spent on
caregiving tasks, caregiving outcomes, and parental depression and
anxiety levels.
| 3
Analysis of variance (ANOVA) was used to identify significant
differences in parents’ sociodemographic and independent variables
(difficulty of and time spent on caregiving tasks, caregiving outcomes,
and depression and anxiety levels). The statistical significance was
set at P < 0.05.
3 | RESULTS
3.1 | Demographic characteristics of parents and
children with ASD
This study involved 123 mothers and fathers who provided direct
care to children with ASD, with 76.4% (n = 94) being mothers and
23.6% (n = 29) being fathers. Most children (45.5%, n = 56) were
between 7 and 9 years old, 38.2% were younger than 7% and 16.3%
were older than 9 years. The other sociodemographic factors are
shown in Table 1.
3.2 | Caregiver burden
3.2.1 | Oberst caregiving outcomes scale
The average difficulty scores of caring for children with ASD were
moderate (M = 3.14, SD = 0.95), indicating a moderate level of
caregiving burden due to task difficulty. The average time spent
providing care was found to be moderate (M = 3.35, SD = 1.03),
indicating a moderate level of caregiving burden due to time spent
performing caregiving tasks (Table 2).
3.2.2 | Bakas Caregiving Outcomes Scale
The BCOS was used to measure changes in the lives of the parents as
a result of caring for children with ASD (Table 2). On average,
parents reported that their lives changed for the worse as a result of
caring for children with ASD (M = 3.25, SD = 1.05).
3.3 | Psychological distress measure
3.3.1 | Caregiver anxiety and depression
The prevalence of caregiver anxiety and depression levels (Table 2)
was assessed by administering the HADS to parents of children with
ASD. Parents were found to have borderline anxiety (M = 10.8,
SD = 2.12) and depression (M = 11.45, SD = 2.17) levels (Table 4).
3.4 | Correlations
The Pearson’s correlation coefficient (Table 3) was used to determine
the relationships between the parents’ burden (OCBS‐D subscale,
OCBS‐T subscale, and BCOS scores) and psychological distress
(HADS score). The OCBS‐measured time required to perform
caregiving tasks correlated with the OCBS‐measured difficulty of
caregiving tasks. The OCBS‐D score positively correlated with the
OCBS‐T score, r(123) = 0.58, P < 0.001, and negatively correlated
with the BCOS score, r(123) = −0.32, P < 0.001 and r(123) = −0.29,
4 | ALNAZLY AND ABOJEDI

T A B L E 1 Sample characteristics: parents and children TABLE 1 (Continued)

Participants characteristics Frequency % Participants characteristics Frequency %

Child sex Family income
Male 80 65.0 Unsatisfactory 40 32.5
Female 43 35.0 Barely sufficient 60 48.8
Child age Satisfactory 23 18.7
<7 47 38.2 Hours child spends in school
7‐9 56 45.5 >4 h in a special needs school 74 60.2
>9 20 16.3 <4 h in school 49 39.8
Child birth rank Relationship to child
First 29 23.6 Father 29 23.6
Second 72 58.5 Mother 94 76.4
Other 22 17.9 Family residence
Sex Urban 85 69.1
Male 22 17.9 Rural 38 30.9
Female 101 82.1 Attended a course in caregiving for children
Age with ASD

<35 48 39 Yes 55 44.7

35‐45 54 43.9 No 68 55.3

>45 21 17.1 Child has other disability

Number of male children in the family Yes 89 72.4

1 31 25.2 No 34 27.6

2‐3 67 54.5
>4 25 20.3
Number of female family members
P < 0.001, respectively. Caregiving outcome was found to be
1 47 38.2 negatively correlated with parents’ depression, r(123) = −0.19,
2‐3 58 47.2 P < 0.001, and anxiety levels, r(123) = −0.33, P < 0.001. Parents’
>4 18 14.6 anxiety levels were found to be positively correlated with depression,
Number of family members r(123) = 0.42, P < 0.001. The other relationships were not significant.
<5 50 40.7
5‐8 53 43.1
3.5 | Analysis of variance
>8 20 16.3
Number of years providing care ANOVA (Table 4) was conducted to determine the relationships
between parents’ demographic characteristics and independent
<5 28 22.8
variables (OCBS‐D, OCBS‐T, BCOS, and HADS scores). The analysis
5‐8 62 50.4
indicated that the relationship between caregiving burden as
>8 33 26.8
assessed using the OCBS‐D mean score and demographic character-
Education level
istics varied with respect to parents’ marital status, F(1, 122) = 7.26,
12th grade or less 41 33.3
P = 0.01; employment status, F(1, 122) = 24.07, P = 0.001; age,
College 70 56.9 F(2, 122) = 4.98, P = 0.01); and number of female family members,
Graduate school 12 9.8 F(2, 122) = 4.09, P = 0.02. However, the score did not vary signifi-
Marital status cantly with respect to the number of males in the family,
Married 87 70.7 F(2, 122) = 0.83, P > 0.05. The mean scores for the OCBS‐T subscale
Divorced mother 36 29.3 varied significantly only with parents’ employment status,

Employment status F(1, 122) = 11.65, P = 0.001. ANOVA was also conducted to deter-
mine the relationship between parents’ demographic characteristics
Yes 27 22.0
and the BCOS score and the results indicated that the score only
No 96 78.0
differed depending on the number of female family members,
(Continues)
F(2, 122) = 5.26, P = 0.007. There were no significant differences in
ALNAZLY AND ABOJEDI | 5

T A B L E 2 Psychological distress measures 4 | D I S C U SS I O N

Measures of parents’ burden M ± SD
Caregiving burden
OCBS‐dfficulty 3.14 ± 0.95
OCBS‐time 3.35 ± 1.03
BCOS 3.25 ± 1.05
HADS
Anxiety 10.78 ± 2.12
Depression 11.45 ± 2.17
Abbreviations: BCOS, Bakas Caregiving Outcomes Scale; OCBS‐D,
perceived difficulty of caregiving tasks; OCBS‐T, perceived time spent on
caregiving tasks.
the score with respect to other demographic characteristics (P > 0.05
for all F statistics). The mean scores of depression varied significantly
with respect to parents’ marital status, F(1, 122) = 30.78, P = 0.01.
Finally, the ANOVA statistics indicate that the mean scores of the
anxiety subscale varied significantly only with respect to parents’
marital status, F(1, 122) = 9.58, P = 0.001.
To further explore the statistically significant differences
among groups of three in which a significant F test result was
obtained, the least significant difference (LSD) post hoc test was
performed.
Parental age and number of female family members were further
investigated. The LSD post hoc analysis (Table 5) showed significant
differences between parents in different mean age group categories,
indicating that parents aged 45 or younger perceived greater task
difficulty than those older than 45. However, there was no significant
difference in caregiving task difficulty based on the number of female
family members (1, 2‐3, or 4 or more) (Table 6). The LSD post hoc
comparison of the categories for number of female family members
showed that the mean for having one or two to three female children
in the family was higher than when there were four or more (Table 7).
Married parents (Table 8) were more affected by anxiety (M = 11.13,
SD = 0.27) than were divorced parents (M = 9.74, SD = 0.44). Di-
vorced parents, however, had a higher depression mean score (11.73)
than did married parents (10.52).
The study’s findings indicated that many of the caregivers of children
with ASD are mothers. Padden and James16 also found mothers of
children with ASD to have more parenting responsibilities than
fathers. In most cultures, women tend to take on more domestic
responsibilities whereas fathers are more involved in the financial
support of the family. The parents who participated in the current
study were college graduates and did not receive any training on
caring for children with ASD although a majority of them had more
than five years of experience caring for their autistic children.
Our findings indicate that parents were moderately burdened
due to the time spent on caregiving tasks, task difficulty, and negative
life changes. Parents had difficulty balancing caring for themselves
and their children with ASD. Previous studies have been conducted
to assess caregivers’ psychosocial burdens.17,18 Our study is different
from previous studies because it examines parents’ perceived burden
as a result of time spent performing caregiving tasks and task
difficulty levels. The OCBS measures social functions and subjective
well‐being, which comprises emotional reactions, cognitive judg-
ments, and general health.
As in Al‐Fars et al19 in the present study, participating parents
reported having high anxiety and depression levels, confirming the
findings of previous studies conducted on caregivers of children with
ASD. In contrast to these findings, Lerthattasilp et al17 found a low
prevalence of depression among caregivers of children with ASD.
However, caregivers might be overwhelmed by their own life events
and adjustments to the needs of children with ASD, who require the
ongoing use of extra resources. Such feelings could lead to high levels
of anxiety and depression.
There was a positive correlation between the time spent on
caregiving tasks and parents’ burden, depression, and anxiety levels.
Caregiving time inversely correlated with caregiving outcome; the
more time spent on caregiving, the worse the caregiving outcome
was, leading to increased levels of burden, depression, and anxiety.
The study’s correlation findings also indicate that caregiving outcome
is inversely related to parents’ anxiety and depression; a negative
perception of caregiving outcomes is correlated with increased
depression and anxiety levels, which may explain the source of

T A B L E 3 Pearson correlation between burden, depression, and anxiety levels of parents

OCBD OCBT BCOS Depression Anxiety

Pearson’s correlation
OCBS‐D 1 0.580** −0.315** −0.012 0.041
OCBS‐T 0.580** 1 −0.286** 0.102 0.103
BCOS 1 −0.191* −0.331**
Depression 1 0.421**
Anxiety 1
Abbreviations: BCOS, Bakas Caregiving Outcomes Scale; OCBS‐D, perceived difficulty of caregiving tasks; OCBS‐T, perceived time spent on caregiving
tasks.
*P < 0.05 level, two‐tailed.
**P < 0.01 level, two‐tailed.
6 | ALNAZLY AND ABOJEDI

T A B L E 4 ANOVA statistics for task difficulties, caregiving outcomes, and anxiety and depression (F value)

F value
Demographics OCBS‐D OCBS‐T BCOS Depression Anxiety
Marital status 7.26** 2.247 0.678 7.21** 9.58**
Employed 24.08** 11.649** 0.445 0.42 0.00
Age 4.98* 0.529 2.744 2.76 1.16
Number of male children in the family 0.83 0.918 0.518 1.67 0.82
Number of female family members 4.09* 1.483 5.264** 1.46 0.15
Abbreviations: ANOVA, analysis of variance; BCOS, Bakas Caregiving Outcomes Scale; OCBS‐D, perceived difficulty of caregiving tasks; OCBS‐T,
perceived time spent on caregiving tasks.
*P < 0.05.
**P< 0.01.

T A B L E 5 LSD post hoc caregiving perceived task difficulty burden: psychological distress associated with caring for a child with ASD.
parent age Anxiety and depression were positively related in the current study.
Anxiety and depression usually go hand in hand, and burden often
Parents age 35 or less 35‐45 Older than 45
leads to psychological distress, especially anxiety and depression.
35 or less −0.07 6.6429*
Demographic factors such as marital status, employment, age,
35‐45 6.7169*
and number of female family members correlated with the level of
Older than 45
parents’ burden and caregiving outcome as well as with anxiety and
Abbreviation: LSD, least significant difference. depression. These findings were similar to those of Souza et al20
*P < 0.05.
However, our study established that task difficulty was higher among
parents less than 45 years. The nature of ASD and the caregiving
demands have a larger impact on younger caregivers because they
T A B L E 6 LSD post hoc caregiving perceived task difficulty burden: disturb the sequence of the younger caregiver’s life cycle. Caring for
number of females in the family
an ASD person is a lifelong duty and the intensity of care increases
Number of females in the family 1 2‐3 4 or more over time. Over the course of caregiving, younger caregivers often
1 −0.2957 −2.6903 experienced an increase in the intensity of caregiving and were
2‐3 −2.3946 forced to reduce the time spent on social activities and skip
4 or more opportunities to enroll in the work force. This was unlike the South

Abbreviation: LSD, least significant difference. Korean study, where Kim et al21 found that the caregivers aged 40
*P < 0.05. and under who were caring for patients’ with Parkinson disease
reported a significantly lower subjective burden than those of aged

T A B L E 7 LSD post hoc outcomes and number of females in the 41 and above. As literature on younger caregivers’ burden is scant,
family more research is recommended to explore the cause of younger
caregivers’ burden.
Number of females in the family 1 2‐3 4 or more
An interesting finding in this study was associated with the
1 −1.03 4.2400*
caregiving burden that contributed to perceived negative caregiving
2‐3 5.2682*
outcomes. The number of female siblings of ASD children apparently
Abbreviation: LSD, least significant difference. had an influence on the parents’ burden. A previous study had
*P < 0.05.
reported that children expressed an increased demand for spending
quality time with parents, especially female adolescents.22 However,

T A B L E 8 Marital status and anxiety and depression in Jordanian culture, parents feel more responsible for girls’ welfare
than that of males. Moreover, in the Jordanian culture, families with
HADS Marital status M SE
female children usually have more help with household chores and
Anxiety
caregiving tasks by girls who are expected to help their mothers with
Married 11.14 0.27 housework, thereby easing the caregiving burden. The link between
Divorced 9.74 0.44 caregivers’ burden and the female family members is unclear
Depression especially if the caregiver is employed. In addition, parents were
Married 10.52 0.30 burdened when the number of female family members was less than
Divorced 11.73 0.45 4. This may be because a smaller number of girls in the family creates

Abbreviation: HADS, Hospital Anxiety and Depression Scale. a greater need for attention from the parents who are usually
ALNAZLY AND ABOJEDI | 7

dedicated to the care of the child with ASD, which may result in 4.3 | Generalizability
limited attention and time given to other children. Consequently, our
This study contributes to the literature on the psychological distress
finding does have profound implications for the families with
experienced by parents caring for children with ASD and the factors
female children in the way it affects family's relationships and
associated with the challenges faced. While previous studies indicated
mental well‐being.
that parents of children with ASD experienced burdens and
Although 78% of caregivers were unemployed, yet employed
psychological distress, few studies have explored the level of burden
parents experience a higher burden level. Employed parents feel that
in Jordan and other Arab countries. The study provides new
caregiving is a complicated role that requires both personal and
knowledge of the caregiving burden and psychological distress
professional sacrifices. Therefore, the employed caregivers struggle
experienced by parents caring for children with ASD in Arab countries,
with the competing demands of the job, the family needs, and
where family responsibilities are more communal than in Western
household work. This added hardship experience leads to a higher
countries. This study also contributes to knowledge of the factors
caregiving burden.
associated with parents’ burden and psychological distress. The
Divorced parents reported higher levels of both anxiety and
caregivers of ASD children were not randomly selected. The general-
depression than those who were married. Divorcees’ psychological
izability of the findings is limited to caregivers of ASD children with
distress may stem from emotional pain, relationship conflict, or
certain characteristics and because those caregivers are predomi-
disengagement from coparenting.23 Likewise, divorced mothers face
nantly parents, the results may not be different when generalized to
economic disadvantages and therefore higher levels of burden and
the whole population.
depression.24

4.1 | Limitations 5 | CO NCL USIONS

The study was conducted in three Child Development Centers
located in Amman, the capital of Jordan. Given the varying distances
to other cities in Jordan, it is possible that some parents who could
have provided useful insights for the study were not included.
4.2 | Implications for nursing practice
These findings have direct implications for mental health nurses and
health care providers of parents caring for children with ASD. The
authors suggest that assessing parents’ psychological distress can
provide opportunities to help them develop strategies to cope with
challenging caregiving situations to reduce the psychological distress
they experience.
The study findings indicated that parents’ psychological distress
is influenced by sociodemographic characteristics. Assessing parents’
sociodemographic variables is important for planning interventions
that improve caregiving outcomes. More specifically, intervention
may target younger mothers and employed and divorced parents.
Educating siblings, both males and females, about autism and how to
build a relationship with a sibling with ASD may decrease both
parents’ burden and siblings’ burden, thus also benefitting siblings.
There are few studies on burden, outcome, and depression among
parents of children with ASD in Jordan. This study will therefore
provide a reference for future studies on interventions designed to
make caring for such children easier. This study's findings establish
parents’ burden, outcome, anxiety, and depression levels, creating a
base for future research and for the design of policies on
interventions to ease the caregiving burden.
Policy makers in the Jordanian Ministry of Health can utilize the
findings of this study to fund further studies on caregiving to ASD
children and to develop policy interventions to improve positive
caregiving outcomes and decrease the burden.
The results of this study highlighted the impact of caregiving on
parents’ psychological distress. Parents, especially mothers, are the
primary caregivers of autistic children. In addition, the parents’
burden was influenced by their marital status, employment, age, and
the number of female family members. We recommend the utilization
of this study’s findings to develop interventions for easing the
caregiving burden and improving the psychological health of parents,
thereby improving their well‐being.
CON F LI CT OF IN TE RES T S
The authors declare that there is no conflict of interests.
ORCI D
Eman Khamis Alnazly http://orcid.org/0000-0002-9327-6756
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How to cite this article: Alnazly EK, Abojedi A. Psychological
distress and perceived burden in caregivers of persons with
autism spectrum disorder. Perspectives in Psychiatric Care.
2019;1–8. https://doi.org/10.1111/ppc.12356