Applied Research

International Quarterly of
Community Health Education
Burden, Social Support, and Life Satisfaction 2019, Vol. 39(3) 147–153
! The Author(s) 2019
Among Caregivers of Children With Intellectual Article reuse guidelines:
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Disability: The Case of Felege Abay and DOI: 10.1177/0272684X18819974
journals.sagepub.com/home/qch

Shembt Primary Schools, Bahir Dar, Ethiopia

Fentanesh Gebeyehu1, Amare Sahile1, and Meseret Ayalew1

Abstract
This study was conducted to examine the burden, social support, and life satisfaction among caregivers of children with intellectual
disability. The level of burden, social support, and life satisfaction of caregivers; the relationship among burden level, social support,
and life satisfaction; and burden level difference across sociodemographic characteristics of the participants were the objectives of this
study. With inclusion criteria of availability, willingness, and pertinent priority of being parents, grandparents, and siblings of the child,
74 caregivers were selected using comprehensive sampling technique. Descriptive statistics, one sample t test, Pearson correlation
coefficient, independent sample t test, and one-way analysis of variance, were used for data analysis. The findings revealed that
caregivers are experiencing much level of burden with inadequate social support and have pitiable satisfaction in their life. Burden
is negatively correlated with social support and life satisfaction, but social support is positively correlated with satisfaction in life. Some
of the sociodemographic variables, such as sex and school, were showing significant differences in the experiences of burden level,
while all other sociodemographic variables used in this study were not having significant difference. The result implied that caregivers
are in need of social support so as to outweigh the level of burden and enhance their satisfaction in life.

Keywords
burden, social support, life satisfaction, intellectual disability, caregivers

Introduction
Intellectual disability is a chronic developmental condition,
which grossly affects day-to-day functioning of the growing indi-
viduals.1 Unlike people with physical disability, children with
intellectual disability have a cognitive limitation that seriously
affects their progress toward greater independence.2 As the
result, a child with intellectual disability lacks self-help, social
and communication, academic, leisure, and recreational skills.
Developmental disorders generally and intellectual dis-
ability particularly are becoming highly prevalent throughout
the world. According to World Health Organization1 report,
10% of the world’s population has some form of intellectual
disability. In Ethiopia, it is estimated that nearly two million
people have intellectual disability.1
Caring for a child with intellectual disability brings mul-
tiple challenges to caregivers, such as additional financial
burdens for treating their child’s condition, dealing with the
child’s challenging behavior, and social stigma associated
with disabilities.3–5
Research findings revealed that caregivers of a child with a
disability often experience more physical health symptoms,
negative effects, and poorer psychological well-being
comparing with parents of a child without a disability.6,7
The additional social, psychological, physical, economical,
and emotional needs of children with intellectual disability
who are not more of functioning may affect the overall life
satisfaction of caregivers.
Burden is a social, psychological, physical, economic, or
emotional problem experienced by caregivers, which can
accumulate over a long period of time.8 Parents of children
with intellectual disability face a multitude of challenges.8
Another additional burden frequently reported is that
parents of children with intellectual disability are subject to
humiliation. As there is little awareness about intellectual
disability among the community members, stigmatizing
parents with intellectually disabled child would be there.
1
Bahir Dar University, Ethiopia
Corresponding Author:
Meseret Ayalew, Bahir Dar University, P.O. Box.1179, Bahir Dar, Ethiopia.
Email: messiethio@gmail.com
148
In addition, families of children with intellectual disability
are often sensitive to drawing negative attention to their fam-
ilies in public places.9,10
Caregivers of children with intellectual disability might be
in need of support from others due to the fact that rearing
these children might impose additional burdens on them.
Social support is a means by which people give assistance
to each other.11 Various literatures suggest that support ena-
bles people to be more cognitively aware that they are cared
for or valued as members of social networks.12,13 In either
case, social support is an appeal for and receipt of assistance.
Life satisfaction is an individual’s judgment of how satis-
fied they are with their present state of affairs based on a
comparison with criteria in which each individual sets for
himself or herself.14 As the concept of life satisfaction reflects
cognitive aspects of individuals, it is important to understand
how caregivers of children with intellectual disability perceive
their life and assess their life satisfaction as it reflects their
cognitive appraisal of burden that may be part of caring for
their children with intellectual disability.
Studies on life satisfaction of caregivers regarded
caregivers: gender, age, and household monthly income as
important sociodemographic variables.13,15 However, these
sociodemographic characteristics were considered as control
variables; thus no detailed explanations were mentioned.
Other studies also found that mothers of children with intel-
lectual disability actually reported lower quality of life than
fathers, but the difference was not statistically remarkable.16
Despite the incoherent findings and insignificant associa-
tion with life satisfaction, these caregiver-related factors are
of importance because they may further explain how care-
givers’ particular characteristics affect their life satisfaction.
As for characteristics of caregivers of intellectually disabled
child; sex, marital status, educational level, relationship with
the child, job, and average monthly income are selected to be
examined in this study.
Thus, in this study, mainly level of burden, social support,
and life satisfaction, the relationship among burden level,
social support, and life satisfaction of caregivers and level
of burden across sociodemographic characteristics of the par-
ticipants are sought to be assessed. If there is burden in life,
there is a challenge in work and living condition which in
turn affects our life satisfaction. This burden can be reduced
with the help of social support gained from others so that our
life satisfaction can be enhanced. It is with this framework
that this study is geared.
A study carried out by Malhotra et al.17 on life satisfaction
of caregivers found that mothers of children with intellectual
disability actually reported lower quality of life than fathers,
but the difference was not statistically remarkable. In relation
to this, Yong et al.18 carried out a study and his finding
revealed that psychological well-being among mothers of
children with disabilities (including autism and mental dis-
ability) at higher age had lower psychological well-being.
International Quarterly of Community Health Education 39(3)
In Ethiopian context, few studies have been conducted to
assess the burden, social support, and life satisfaction of
caregivers who are working on children with intellectual dis-
abilities.19–22 Safi20 revealed that the situation of children
with intellectual disability in the Global South, including
Ethiopia, largely remained unimproved. Societal attitudes
about disabled children have been negative.
The majority of these children face enormous socioeco-
nomic barriers; lack access to basic needs such as health
and education and subject to multiple deprivations within
their family; and this disability has rendered them for pow-
erlessness, marginalization, and lower social status among
their able-bodied peers, in family and community.
A study conducted by Birhanu19 indicated that parents of
children with intellectual disabilities are suffering a lot due to
being stigmatized, discriminated, and isolated which accom-
panied with frustration, shame and other psychosocial chal-
lenges resulted from misunderstandings, and negative
stereotypes and attitudes about mental retardation.
Another study conducted by Chernet and Opdal22
revealed that caregivers of children with intellectual disability
face plenty of challenges including emotional, social,
economic, and material while raising these children. This
study further pointed out that in most cases, caregivers
have insufficient information and training related to intellec-
tual disability, insufficient formal or informal supports
accompanied with inauspicious attitudes on the part of the
society toward children with intellectual disability, worries
about the future, financial problems, and lack of materials.
A study conducted by Tilahun et al.23 also indicated that
there is a severe shortage of services for children with disabil-
ity in Ethiopia. This study further indicated that access to
services is also impeded by negative beliefs and stigmatizing
attitudes toward affected children and their families.
A study conducted by Kahsay21 showed that having
family members with disability exposed caregivers to have
psychological distress, subjective burden, and affiliate
stigma. This situation is in turn expected to be resulted in
compromising the life satisfaction of caregivers.
Despite the presence of studies mentioned earlier that out-
lined the challenges and experiences of rising children with
disability and their families face, the issue is not well studied
in Ethiopian, specifically in the study area yet. In addition,
although the studies stated earlier also indicated the burden
and social support of caregivers, none of them have tried to
examine the relationship among burden, social support, and
life satisfaction of caregivers simultaneously as well as the
role of sociodemographic variables and social support in
moderating the burden level that caregivers face is not artic-
ulated yet. Because of this absence of studies on burden,
social support, and life satisfaction of caregivers in the
national level, the researcher initiated to generate much
more information on these issues in Bahir Dar city.
Thus, it would be vital to examine the extent of burden
and social support, how the support is perceived, and the
Gebeyehu et al.
life satisfaction of caregivers of children with intellectu-
al disability.
In Bahir Dar city, there are two primary schools: Felege
Abay and Shembt, which are offering education for children
with intellectual disability. There are 74 children with intel-
lectual disability in these schools. As the researchers try to
figure out earlier, there are no studies concerning about
burden, social support, and life satisfaction of caregivers in
the national as well as the regional level. Hence, taking these
things into consideration, the researchers were motivated to
examine the objectives stated in the following:
• Examine the burden, social support, and life satisfaction
level among caregivers of rearing children with intellectu-
al disability;
• Scrutinize the relationship of burden level, social support,
and life satisfaction among caregivers of rearing children
with intellectual disability; and
• Inspect the difference of burden level across sociodemo-
graphic characteristics of the participants.
Methods
This study employed quantitative approach. This approach
was selected due to the fact that the nature of the problem in
which this study deals with requires quantitative data. In
terms of the specific objective manipulation, it employed
descriptive survey, and the specific design of this study was
cross-sectional survey. This study was conducted in Amhara
regional state, Bahir Dar city, in two governmental primary
schools: Felege Abay and Shimbet, which have been offering
education for children with intellectual disabilities. These
sites were selected purposively due to the fact that these are
the exceptional schools providing education for children with
intellectual disability in Bahir Dar town.
The target population of this research was caregivers of
intellectually disabled children who have been attending their
education in Felege Abay and Shimbet primary schools.
There were 74 intellectually disabled children in the two
sites: 42 in Felege Abay and 32 in Shembt primary schools.
One caregiver for each child with inclusion criteria of avail-
ability, willingness, and pertinent priority of being parents,
grandparents, and siblings (age >18 years) of the child was
selected using comprehensive sampling technique.
The data collection instrument of this study was closed-
ended questionnaire. The questionnaire that assesses the soci-
odemographic information of the caregivers was developed
by the researcher. The questionnaire used to assess the
burden of rearing children with intellectual disability
among caregivers was adapted from burden assessment
schedule, which was first developed by World Health
Organization24 having a reliability of .84 and with pilot test
reliability of .92. This instrument was selected due to the fact
that it was simple and understandable, consisting of 12 items
with 3-point Likert-type scale with the connotation of never
149
concerned with, somewhat concerned with, and very much con-
cerned with.
The questionnaire used for assessing the support that
caregivers received from others was adapted from
Multidimensional Scale of Perceived Social Support, which
was developed by Zimet et al.25 with a pilot test reliability of
.90. This instrument consists of 11 items with a 5-point
Likert-type scale, and it is simple to administer and easy to
understand. The questionnaire used to assess the life satisfac-
tion of caregivers was adapted from Satisfaction with Life
Scale, which was developed by Diener et al.14 with a pilot test
reliability of .67. This instrument consists of five items with 5-
point Likert-type scale. The whole instrument was translated
from English into Amharic for making it easy for under-
standing to the participants.
To conduct this study, before the data collection was
started, the participants were asked for their consent to
participate. The researcher made discussion with guidance
counselor or special need expert on issues of ethics, confiden-
tiality, and how to collect the data and other related proce-
dures. Informed consent was assured before the data
collection was started. A lot of effort was made to safeguard
participants against any risk. Privacy of respondents by no
means in any phase of this study was not disclosed at
least knowingly.
The collected data were analyzed mainly quantitatively
with thematic description as triangulation purpose.
Statistical packages software (SPSS, Version 22) was used
for data entry and analysis. Data analysis was done in line
with the research questions: The first research question was
analyzed using one sample t test; the second research ques-
tion was analyzed using correlation; and the last research
question was addressed using independent sample t test and
one-way analysis of variance (ANOVA).
Result
Sociobackground information such as school, sex, age, reli-
gion, marital status, educational level, relationship, job, and
average monthly income are provided. Although data were
collected from 74 participants, having discarding four incom-
plete questionnaires, the analysis was done based on the com-
plete data collected from 70 participants.
The sociodemographic data revealed that majority of the
respondents were from Felege Abay primary school (57.1%).
With regard to sex, majority of the participants are females
(71.4%). Majority of the participants (77.1%) are also
Orthodox Christian followers. In terms of marital status,
greater parts of the participants are married (45.5%); and
from educational level point of view, majority of the partic-
ipants are high school completed (38.6%). Regarding with
their relationship with the child greater part of the partici-
pants are mothers (28.6%), and majority of the participants
earn less than 3,000 Ethiopian birr per month (72.9%;
see Table 1).
150 International Quarterly of Community Health Education 39(3)

Table 1. Background Information of the Participants (N ¼ 70). Table 2. The Burden, Social Support, and Life Satisfaction Level of
Rearing Children With Intellectual Disability Among the Participants.
Characteristics Frequency Percentage
Subject Mean SD Test value T Sig. g2
School
Felege Abay 40 57.1 Burden 29.94 9.12 24 7.29* .000 .30
Shimbet 30 42.9 Social support 16.61 9.97 33 16.26* .000 .73
Sex Life satisfaction 6.87 2.81 15 24.18* .000 .89
Male 20 28.6
Abbreviation: SD, standard deviation. Statistically significant at p < .05, N ¼ 70.
Female 50 71.4
Note. *is used for indicating significance difference.
Religion
Orthodox 54 77.1
Muslim 6 8.6 value, which was 33 with moderate effect size. At .05 level of
Protestant 9 12.9 significant, t(69) ¼ 16.26, p ¼ .000. The result shows that
Catholic 1 1.4 caregivers had significantly lower social support from
Others — — others while nurturing children with intellectual disability.
Marital status Similarly, the mean score of caregivers’ life satisfaction
Single 14 20 found to be significantly lower from the mean test value,
Married 32 45.5
which was 15 with large effect size. At .05 level of significant,
Separated 10 10
t(69) ¼ 24.18, p ¼ .000. The result indicates that caregivers
Divorced 17 24.3
Educational level had significantly lower satisfaction in their life. This might be
Not able to read and write 5 7.1 due to the fact that caregivers are challenged a lot in rearing a
Elementary completed 25 35.7 child with intellectual disability with negligible support from
High school completed 27 38.6 others and this in turn leads them to be dissatisfied in their
Certificate or diploma 10 14.3 life (see Table 2).
First degree 3 4.3 The relationship between burden level, social support, and
Relationship with the child life satisfaction of caregivers was computed with Pearson
Mother 20 28.6
correlation coefficient. The relationship between level of
Father 14 20
Grand mother 16 22.9 burden with social support and life satisfaction was investi-
Grand father 2 2.9 gated using Pearson product–moment correlation coefficient.
Sister 14 20 Preliminary analyses were performed to ensure no violation
Brother 4 5.7 of the assumptions of normality, linearity, and homoscedas-
Job ticity. The result revealed that there was insignificant negative
Gov. employed 28 40 correlation between the levels of burden and social support
Private 35 50 (r ¼ .133, p> .05).
NGO employed 2 2.9
Regarding with burden and life satisfaction, there is slight-
Others 5 7.1
Average monthly income
ly statistically negative correlation (r ¼ .274, p <.05), with
<$111 51 72.9 high levels of burden associated with lower levels of satisfac-
$111–$222 14 20 tion in life. However, the coefficient of determination calcu-
$223–$370 4 5.7 lation indicated that burden level is only accounted for
>$370 1 1.4 7.51% of the total variance of caregivers’ life satisfaction.
Abbreviation: NGO, nongovernmental organization.
In line with social support and life satisfaction again, there
is statistically significant relationship (r ¼ .703, p < .05), with
high levels of social support associated with high levels
of satisfaction in life among caregivers. The coefficient of
The level of burden, social support, and life satisfaction of determination calculation indicated that social support is
rearing children with intellectual disability among caregivers accounted for 49.42% of the total variance of caregivers’
was computed using one sample t test. The results of one life satisfaction.
sample t test demonstrated that the mean score of burden Partial correlation was also computed to examine the rela-
among caregivers found to be significantly higher from the tionship between burden and life satisfaction while control-
mean test value, which was 24 with small effect size. At .05 ling for social support. The result revealed that slightly
level of significant, t(69) ¼ 7.29, p ¼ .000. The result shows negative correlation between burden level and life satisfac-
that caregivers had significantly higher burden in nurturing tion, while the role of social support is controlled (r ¼ .255,
children with intellectual disability. p < .05), with high levels of burden associated with lower
On the other hand, the mean score of caregivers’ social levels of satisfaction in life. However, the coefficient of deter-
support found to be significantly lower from the mean test mination calculation indicated that burden level is only
Gebeyehu et al. 151

Table 3. The Relationship Among Burden, Social Support, and Life Satisfaction of the Participants.

Variance
Variables Mean SD r shared (%) Sig.

Burden vs. social support 29.94 16.61 9.12 9.97 .133 1.77 .27
Burden vs. life satisfaction 29.94 6.87 9.12 2.81 .274* 7.51 .022
Social support vs. life satisfaction 16.61 6.87 9.97 2.81 .703* 49.42 .000
Burden vs. life satisfaction (controlling for social support) 29.94 6.87 16.61 9.12 2.81 9.97 .255.* 6.50 .034
Abbreviation: SD, standard deviation. Statistically significant at p < .05, N ¼ 70.
Note. *is used for indicating significance difference.

Table 4. The Level of Burden Across Sociodemographic Table 5. The Level of Burden Across Sociodemographic
Characteristics of the Participants. Characteristics of the Participants.

Variable Mean SD df T Sig. g2 Variables df Mean square F Sig.

School Age 2 67 91.10 82.95 1.09 .34

Felege Abay 32.05 7.67 68 2.30* .025 .072 Marital status 3 66 30.94 85.56 0.36 .78
Shimbet 27.13 10.22 Educational level 4 65 12.07 87.56 0.14 .97
Sex Relationship with the child 5 64 146.81 78.21 1.88 .11
Male 26.10 10.51 68 2.29 .025 0.75 Job 3 66 48.43 84.76 0.57 .64
Female 31.48 8.11 Average monthly income 3 66 129.94 81.06 1.60 .197
Abbreviation: SD, standard deviation. Statistically significant at p < .05, N ¼ 70. Note. Statistically significant at p < .05, N ¼ 70.
Note.* is used for indicating significance difference.
challenging for the caregivers regardless of their differences in
the aforementioned sociodemographic characteristics.
accounted for 6.50% of the total variance of caregivers’ life
satisfaction (see Table 3).
The level of burden across sociodemographic character- Discussion
istics of the participants was investigated using independent The findings of the study regarding burden level showed that
sample t test and one-way ANOVA. The independent sample there was statistically significant difference. It revealed that
t test was computed to examine the difference across school the burden level in which caregivers encountered is excelled
and sex. At .05 level of significance, t(68) ¼ 2.30, p < .05 and t than the expected one. This result is similar with the findings
(68) ¼ .2.29, p < .05 for school and sex, respectively (see of other studies that were conducted both in the international
Table 4). as well as in the national level. For instance, previous finding
There was statistically significant difference with moderate obtained by Frankish8 showed that parents of children
effect size in both cases. This result indicated that burden of with intellectual disability face a multitude of challenges.
caregivers from Felege Abay School is higher than those The result is also supported by Piskur et al.,9 and Rahi
caregivers from Shembt School. This might be due to the et al.,10 which indicated that it is challenging for families
sociodemographic differences of caregivers of the two children with intellectual disability to go out into the com-
schools. The result also indicated that burden of female care- munity for shopping, meals, or other typical family outings.
givers is higher than males. This might be true because the In such pursuit, the study carried out by Bagenholm and
cultural context where this study is conducted, it is mainly Gillberg,3 Bocian et al.,4 and Fox and Oross5 portrayed that
females who are responsible to take care of children. caregivers working with intellectual disabilities experienced
One-way ANOVA was computed to assess the levels of different burdens such as social, psychological, physical, eco-
burden across age, marital status, and educational level, rela- nomic, or emotional problem. Another study carried out by
tionship with the child, job, and average monthly income of Birhanu19 indicated that parents of children with mental retar-
the participants. At .05 significance level, the levels of burden dation are suffering a lot due to being stigmatized, discrimi-
are not statistically significant, F(2,67) ¼ 1.09, p ¼ .34; nated, and other psychosocial challenges. In relation to this, a
F(3,66) ¼ 0.36, p ¼ .78; F(4,65) ¼ 0.14, p ¼ .97; F(5,64) ¼ 1.88, study conducted by Chernet and Opdal22 displayed that care-
p ¼ .11; F(3,66) ¼ .57, p ¼ .64; and F(3,66) ¼ 1.60, p ¼ .197 givers of children with intellectual disabilities in Ethiopia face
for age, marital status, educational level, relationship with emotional, social, economic, and material challenges.
the child, job, and average monthly income, respectively (see The finding of this study also indicated that the support
table 5). This finding is consistent with the qualitative data caregivers obtained from other people is less than the
collected from the participants. This might be due to the fact expected one which might worsen the level of burden. This
that the burden of rearing intellectually disabled child is too result is supported by the finding of Flynt et al.,12 which
152
indicated that caregivers of children with intellectual disabil-
ities need a social support that in turn enable them to cope
with the challenges they encounter in their daily lives.
This study further indicated that the life satisfaction of
caregivers was lower than the expected one. This result is
supported by previous study conducted by Malhotra
et al.,17 which indicated that mothers of children with intel-
lectual disability reported lower quality of life.
Regarding with the levels of burden and social support,
there was insignificant negative correlation. This result is in
contrast with the findings of Fiorillo and Sabatini,26 Cohen
and Wills,27 and Gerich28 who had found positive associa-
tions between social support and caregivers tendency to cope
with the challenges they encounter in their daily lives.
With regard to relationship between burden and life sat-
isfaction, the finding of this study displayed that there is
slightly statistically negative correlation. The finding indicat-
ed that when burden of caregivers increase, their satisfaction
in life declines. This finding is supported by Kahsay,21 which
revealed that burden of caregivers is associated with reduced
quality of life and significant impacts on the health and func-
tioning of caregivers. This study further indicated that,
having family members with developmental problem exposed
caregivers to have psychological distress, subjective burden,
and affiliate stigma which in turn expected to compromise the
life satisfaction of the families. Furthermore, he noted
that the financial burden caused by caring for children with
disabilities incurred financial, psychological, social, and
physical stress, and this, in turn, lowered the quality of life
among caregivers.
Concerning with social support and life satisfaction, the
result of this study indicated that caregivers with high social
support would get high level of life satisfaction from it.
Similar to this, the finding by Lu et al.29 portrayed that life
satisfaction is positively related to social support.
Regarding with the levels of burden across sociodemo-
graphic characteristics of age, marital status, educational
level, relationship with the child, job, and average monthly
income, no statistically significant difference was indicated.
This finding is in contrast with Kabasakal et al.30 finding,
which revealed that caregivers’ burden differs across socio-
demographic characteristics.
Conclusion and Suggestions
Based on the results of this study, the following conclusions
are drawn: A mechanism is needed to be created that out-
weigh the level of burden that caregivers are facing. Social
support of caregivers is required to be enhanced. If the level
of social support is increased, then the level of burden will be
minimized. When the level of social support is strengthened,
the life satisfaction of caregivers will also be improved. Thus,
parents and community members have to take part in aiding
caregivers. Because of different responsibilities that care-
givers shoulder, their life satisfaction is adversely affected.
International Quarterly of Community Health Education 39(3)
The regional government in close collaboration with the
regional education bureau should bolster the caregivers
through subsidization. Those nongovernmental organizations
which are working on children including United Nations
International Children’s Fund (UNICEF) and Save the
Children. Plan International, SOS, and others shall deliver
awareness creation training for parents and community mem-
bers so that they would take part in assisting caregivers. The
federal government must give attention for children with intel-
lectual disabilities, twig burden of caregivers, and help them
through training and subsidization. Schools that have been
servicing children with intellectual disabilities should crate dif-
ferent strategies that bolster the caregivers. This research find-
ing displayed that much burden with minimal support among
caregivers; therefore, the current researcher recommend that
further study shall be done in comparison with caregivers of
normal children.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect
to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, author-
ship, and/or publication of this article
ORCID iD
Meseret Ayalew http://orcid.org/0000-0002-9294-189X
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Author Biographies
Fentanesh Gebeyehu has BA degree in Adult Education and
Community Development and Masters degree in Early
Childhood Care and Education.
Amare Sahile, PhD, is an associate professor of Psychology
and currently working in Bahir Dar University.
Meseret Ayalew is an assistant professor of Clinical
Psychology and currently working at Bahir Dar University.