الفهرس 
INTRODUCTIONOnly 14 pages are availabe for public view
 |  | from | 198 |  |  |
| | | from | 198 | | |
Abstract
Raising and caring for children is an essential part of the parents duty
toward their children, but it would be different if their children had a
disability that prevent their chid from being as normal as other children are,
such as his brothers or relatives are. This disability require special long-term
care, especially when the child had ASD , presence of child with ASD not
affect only the child but affect all the family members. Autism Spectrum
Disorder is one of the greatest disorders that cause great stressors and burden
on the caregivers.
Children with ASD and their caregivers face numerous and pervasive
challenges that negatively disturb families and power them to rearrange their
goal and plans. Majority of the caregivers express burden with access to
health care services, social care services, rehabilitation and lack of special
education and access to equal opportunities. Caregivers with autistic children
experienced multiple challenges and stressors such as, physical and
psychological stressors, marital, financial , social stressors due to lack of
social support and community related stressors such as stigma of disease, lack
of integration between governmental and non-governmental association had a
negative effect on the caregivers of autistic children.
Therefore, caregivers with autistic children experience high level of
burden and depression due to financial problem, poor physical health, change
in social relation, and change in daily routine, poor ability to cope with stress.
Adjustment and coping pattern of the caregivers were affected by various
factors such as age of the autistic child at diagnosis with ASD. Caregiver’s
age, caregiver’s education, social support, availability of autism health
services, and caregiver’s financial status also had a pivotal impact on
caregiver’s adjustment.
Summary
120
Thus, the aim of the present study is to assess the burden experienced
by caregivers of child with autism spectrum disorder in El_Beheira
Governorate. A cross- section descriptive research design was used to carry
out this study. The study was conducted at all governmental intellectual
schools (Damanhour, Kafr El_dawar, Koum-hamada, El-mahmoudya, Etay-
EL-baroud, Shubra-kheit intellectual schools) and private centers for autism
coping and rehabilitation in EL_Beheira governorate. The subjects of this
study was all caregivers with autistic children (father, mother, both of them,
stepfather, stepmother, grandfather, grandmother) previously selected from
the previous mentioned settings for conducting this study, who have Child
with autism spectrum disorder only without other disorders and Caregivers
willing to participate in the study.
Three tools were used to collect the required data. Tool I: Stressors
of caregiver having Children with Autism Interview Schedule it consists
of three parts. Part I: Data related to the child, Part II: caregivers’ socio
demographic data and Part IlI: Stressors of caregivers having child with
autism interview Schedule which consists of 38 items and measures six
domains; Physical stressors domain (three items), Psychological stressors
domain (nine items) Social stressors domain (nine items), Financial and
community resources-related stressors domain (four items) Marital stressors
(six items) Management-related stressors domain (seven items. Tool (II):
Caregivers burden scale. Tool (III): Caregivers’ adjustment pattern scale
adapted to modify their child behavior. The tools ware tested for content
validity and reliability. An official letters directed from the dean of Faculty of
Nursing, Damanhour University to secure approval of the responsible
authorities of the head of central agency for public mobilization and statistics
in Cairo governorate to collect necessary data from educational directorate in
Summary
121
EL-Beheira governorate. A written and oral consent was obtained from the
studied caregivers.
The tools were developed and adapted by the researcher based on
extensive review of recent related literature. A pilot study was carried out on
10 caregivers having children with autism spectrum disorder from the
previously mentioned settings (and they were included again to the selected
sample).
Content validity of the study tools ware tested by Jury consists of five
experts from faculty of nursing, Damanhour University in the field of
community health nursing Reliability of the tool was tested by using
Cronbach’ Alpha the results as follows: tool (I) was 0.831, tool (II) was 0.850
and ,tool (III) was 0.852 . Data were collected over a period of 6 months
(from September 2021 to March 2022) from predetermined settings. The
collected data was revised, categorized, coded, computerized, tabulated and
analyzed using statistical package for social sciences (SPSS) version 18. The
following statistical measures were used: analysis of categorical data cross
tabulation with percentages were used to explore relationships between
variables. Appropriate tests such as arithmetic mean, percentages, Pearson
chi-square test (p).ANOVA test (t).
The main results of this study composed of the following:
Part I: Basic characteristic of the studied autistic children.
The mean age of the autistic children was 9.92 ± 1.71, more than two
thirds (68, 2%) of autistic children were male, near about eighty percent
(78.2%) of them were from rural area.
The majority (90.9%) of the autistic children was living with their
families; more than forty percent of the autistic children were the first
child in their families.
Summary
122
Pertaining to the age of the child at diagnosis with ASD, about
(27,4%) of them were diagnosed with autism at age less than four
years, near three quarters of them were diagnosed with autism after age
of four.
The majority of the (90.8%) autistic children were had difficult speech
and late speech, near about three quarters (70.9%) of them had health
problems.
About half (50, 9%) of the autistic children were use atypical language
and repeated words, while about (44.5%) of them were had repeated
body movement and about (20.9%) passionate with specific objects.
About half of (50.0%) the autistic children had self-directed behavioral
problems, more than (40.9%) forty percent of them had destruction of
other’s properties.
Relating to presence of other siblings with autism about (4, 5%) of the
caregivers had another child with autism spectrum disorder, about (20,
9%) of them had a family member with ASD.
Part II: Basic characteristics of studied caregivers with autistic
children.
The majority (90.8%) of caregivers were the mothers of the autistic
child, less than one tenth (6.4%) of them were their fathers.
About (50. %) of caregivers aged more than forty years.
Nearly three quarters of the caregivers had secondary education.
The majority of (87.3%) the caregivers stated that, autism health
services were moderately available.
Summary
123
The majority of studied caregiver’s (87.3%) stated that, their income
wasn’t enough.
Nearly three quarters of the caregivers were housewives/not works and
only about (8.2%) had professional job.
Part III: level of stressors experienced by studied caregivers.
All of studied caregivers (100%) had high-level financial stressors and
limited community resources with a mean score (98.58%).
More than three quarters (80%) of them had high level of marital
stressors with a mean score (81.34%) .
About three quarters (74.6%) of studied caregivers with autistic
children had high level of psychological and physical stressors with a
mean score (81.41%) .
Nearly half (46.4%) of studied caregivers had high level of social
stressors with a mean score (71.81%).
A statistically significant difference was observed between age of
autistic child at diagnosis with ASD and level of caregivers’ stressors, it
was high level among (80%.0) caregivers with children aged 6 years or
more at diagnosis with ASD.
A Statistically significant difference was observed between level of
caregivers’ stressors and presences of family members with autism,
high level of caregivers’ stressor were among those who had family
hereditary diseases (76.6%).
Summary
124
A statistically significant difference was observed between level of
caregivers’ stressors and caregivers’ income (p= 0.020) ,it was high
level of stressors among those (67.7%) who had not enough income.
Part V: Mean score and level of burden experienced by studied
Caregiver.
The majority (97.3%) of studied caregivers had high level of burden,
with mean score (73.70±7.562) and their mean percent score equal
(83.75%).
A statistically significant difference was observed between level of
caregiver’s burden and their autistic child age (p= 0.004) , high level of
burden were among caregivers (100.0%) their children aged from 8
years to 10 years.
A statistically significant difference was observed (p= 0.000) between
level of caregiver’s burden and age of child at diagnosis with ASD,
high level of burden (100.0%) was among caregivers those children
diagnosed with autism after aged 2 years .
A statistically significant difference (p= 0.003) was observed between
mean score of caregivers burden and caregivers perspective about
availability of autism health services, high mean score (79.21±6.518) of
caregivers burden was among those who reported un available health
services.
A statistically significant difference (p= 0.002) was observed between
mean score of caregivers burden and caregivers’ occupation, high mean
score (79.21±6.518) of caregivers burden was among those who had
not work.
Summary
125
Part IV: Adjustment of the Caregiver of a child with Autism.
More than three quarters of caregivers (76.4%) had moderate level of
adjustment, with mean score equal (35.68±6.888), and mean percent
score (59.47%).
A statistically significant difference was observed (P= 0.000) between
level of caregiver’s adjustment and age of diagnosis with ASD among
autistic children, (86.7%) from caregivers who had moderate level of
adjustment their children diagnosed with ASD after aged 6 years .
A statistically significant difference was observed (P= 0.000) between
levels of caregivers adjustment and caregivers perspective about
availability of autism health services, (82.3%) from caregiver who had
moderate level of adjustment their perspective about autism health
services was moderately available.
A statistically significant difference was observed (P= 0.002) between
levels of caregivers adjustment and caregivers age,(83.6%) from
caregivers aged forty years and more had moderate level of adjustment
.
A statistically significant correlation difference was observed between
caregivers stress and caregivers burden (p =0.00), high correlation was
observed (r = 0.694).
A statistically significant correlation difference was observed between
caregivers level of burden and caregivers level of adjustment
(p=0.000), high correlation was observed (r = 0.638).
Based upon the findings of the current study, it could be concluded that:
The majority (91.8%) of studied caregivers were mothers, (100.0%)
from caregiver had high level of financial stressors .Nearly three
Summary
126
quarters (74.6%) of them had high level of physical and psychological
stressors. Thus (97.3%) from caregivers had high level of burden with
mean percent score (83.75%).Moreover, (76.4) from caregivers had
moderate level of adjustment. High correlation (r = 0.694).between
caregiver stressors and caregivers burden, also high correlation (r =
0.638) between level of caregivers burden and their level of adjustment.
Furthermore, there were number of factors which play a significant role
such as age of the child at diagnosis with ASD, age of the caregivers,
level of caregivers education, caregivers financial status , place of
residence, availability of autism health services, presence of other
family member with ASD and social support services.
In light of the present study findings, the following are recommended:-
Recommendation directed to Ministry of Health and Population (MOHP):
Conduct health education campaigns in rural & urban areas about
early sign and symptoms of ASD and benefits that result from early
identification of sign and symptoms of ASD.
Early case finding & screening of early sign and symptoms of
autism spectrum disorder cases.
Assign trained health care providers to provide continuous care for
the autistic child, and help the caregivers to cope with the child’s
condition.
Develop guidelines for nurse’s role with autistic child and with
their caregivers in primary health care settings.
Summary
127
Encourage small projects and provide opportunity for housewives
to increase their income to help them in expensive treatment and the
lifelong process of coping with autism.
Provide opportunities for disadvantaged and less educated women
to empower themselves, by developing & implementing progress
that increase their access microfinance and informal education.
Caregiver’s education programs through media and press should be
developed for mothers of children with ASD to help those who
experience high levels of stress and burden by presenting knowledge
about ASD treatment and training on adaptive coping methods and
teaching communication and problem solving.
Developing authorized hot line number to help mothers or caregivers
of ASD child to ask freely any problem confronting them.
Increase schools specifically designed for children with ASD in
regional areas, and equal geographical distribution of services
provided for intellectually disabled children.