APRIL 2012 DELHI PSYCHIATRY JOURNAL Vol. 15 No.

Original Article
Quality of Life of Parents having Children with
Developmental Disabilities
Shahzadi Malhotra*, Waheeda Khan*, M.S. Bhatia**
*Department of Psychology, Jamia Milia Islamia,
**Department of Psychiatry, UCMS & GTB Hospital, Delhi

Abstract
Background: There are known limitations in functioning of children with developmental
disabilities which result in requirements for long term care far exceeding the usual needs of
children as they develop, or the expectations of their families as a parent. Thus, while caregiving
is a normal part of being a parent, providing the high level of care required by a child with long
term functional limitations can become burdensome and may impact both physical and
psychological health of caregivers. Researches have hardly investigated the Quality of Life
(QoL) in family caregivers of children with developmental disorders as compared to normal
healthy children. Objectives: This study investigated QoL in family caregivers of children with
Mental Retardation (MR) and autism as compared to a control group (CG). Methods: The
sample consisted of 240 parents (40mothers and 40 fathers in each of the three groups) of 120
children having MR, autism and normal healthy children. Diagnostic assessments in children
were carried out using Seguine Form Board test, Vineland Social Maturity scale, Childhood
Autism rating scale. QOL of parents was assessed by the WHOQOL-BREF questionnaire.
Results: Analysis using one way analysis of variance and post hoc analysis revealed that
compared with parents of healthy children, parents in the MR and autism group reported
impairment in all the four domains of QoL. Little differences were observed between MR and
autism groups. Such impairments were found both for fathers and mothers. Conclusion:
Compared with parents of healthy children, parents in the MR and autism group reported
impairment in all the four domains of QoL. Little differences were observed between MR and
autism groups. Such impairments were found both for fathers and mothers. Thus, parents of
children with MR and autism seem to display a higher burden and impaired QoL. These finding
must be taken into account in policy making to provide better and more specific supports and
interventions for this group of diseases. Psycho-social intervention programmes for family
caregivers of children with developmental disorders should incorporate building upon specific
strategies to enhance their quality of life.
Keywords: Quality of Life, parents, children with disabilities.

Introduction present in the developmental period and are

It has been estimated that about 10% of children characterized by limitations in socio-adaptive
experience developmental disabilities requiring functioning and intellectual abilities.
access to the health care system and extensive These limitations in functioning of children
caregiving, often throughout childhood and into the with developmental disabilities can result in
adult years. Mental Retardation and autism are two requirements for long term care far exceeding the
such developmental disorders. This term indicates usual needs of children as they develop, or the
a general deficit in cognitive function that emerges expectations of their families as a parent. Thus,
during childhood. Developmental disabilities while caregiving is a normal part of being a parent,
Delhi Psychiatry Journal 2012; 15:(1) © Delhi Psychiatric Society 171
DELHI PSYCHIATRY JOURNAL Vol. 15 No.1
providing the high level of care required by a child
with long term functional limitations can become
burdensome and may impact both physical and
psychological health of caregivers.
Studies have reported that parents of children
with various developmental disabilities experience
heightened stress1,2, overburden and marginalization
in society3 sense of self blame4 , tiredness or
exhaustion5 . Commenting that little attention has
been given to the health outcomes of caregivers of
developmental disabilities, Talley and Crews 6
identify caregiving as an issue that must be
considered in the context of health (physical and
psychological) that vary across the lifespan
according to the characteristics and developmental
levels of both caregivers and care recipients. Thus,
it has been concluded that disability impacts the
whole family and the determination of appropriate
conceptualization of family outcomes requires an
understanding of the impact of members’ with
disability on family members. This involves three
main issues - 1) stress and caregiving burden and
quality of life, 2) impact on family functioning and
3) eco-cultural adaptation7.
Caregiving and its related burden is considered
to be an important aspect in determining the quality
of life of caregivers. Quality of Life (QoL) as a
concept has been increasingly accepted as an
important outcome measure in patients and
caregivers of chronic illnesses8. QoL includes the
conditions of life resulting from the combination
of the effect of complete range of the factors such
as those determining health, happiness and a
satisfying occupation, education, social and
intellectual attainments, freedom of actions and
freedom of expression9. The concept is further
understood as an individuals’ perception of their
position in life in context of the culture and value
systems in relation to their goals, expectations,
standards and concerns.
Considering the high prevalence rates of
intellectual disabilities along with the high
caregiving demands the need of the hour is to
evaluate and measure the quality of life of parents
of children with various disabilities. Although there
is wide conceptual and theoretical understanding
on the need to determine quality of life of caregivers
of children with developmental disabilities, little
empirical data is available to support these
172 Delhi Psychiatry Journal 2012; 15:(1) © Delhi Psychiatric Society
APRIL 2012
propositions and the specific factors that affect QoL
of this group, especially in Indian context. The
present study is an attempt in this direction of
assessing the quality of life of parents of children
with different developmental disabilities as
compared to normal healthy children.
Aims and Objectives
To evaluate the QOL in parents of children with
mental retardation (MR), autism and normal healthy
control group.
Materials & Methods
Sample
The recruited sample comprised of 120 children
(40 children with MR, 40 with autism and 40 normal
healthy controls). Both parents (mothers as well
as fathers) of all these 120 children were assessed
for their quality of life using the questionnaires.
Children with mental retardation and autism were
those attending OPD at various neuro-psychiatric
hospitals/ clinics and special schools in Delhi.
Participants were parents of children aged 5-15
years. The participating children underwent a
comprehensive clinical diagnostic assessment based
on ICD-10-DCR10 and the psychological tests. For
the normal healthy control group, children without
any reported/ diagnosable developmental/
behavioural/ psychiatric disorder would be
considered. The sample thus comprised of three
groups – Group 1 (Children with MR and their
caregivers), Group 2 (Children with intellectual
disabilities and their caregivers) and Group 3
(normal healthy controls). Children with epilepsy,
hearing impairment, visual impairment, motor
impairment, speech impairment, any other
significant medical illness were excluded from the
study. Single parents, parents having any significant
medical/ psychiatric illness, any significant
medical/ psychiatric family history that might
contribute to caregiver burden were also excluded
from the study.
Tools
1. Sociodemographic Performa: It consisted
of a structured format to record variables
regarding the caregiver and the child with
intellectual disability/ autism such as age,
gender, marital status, education, occupa-
APRIL 2012
tion, birth order.
2. Seguin Form Board Test (SFBT)11- The
test was originally developed by Seguin as
a performance test to assess intellectual
functioning . The test requires the subject
to correctly place ten variously shaped
blocks into corresponding recesses as
quickly as possible.
3. Vineland Social Maturity Scale - The
Indian adaptation of the Vineland social
maturity scale given by Malin12 would be
used to assess the social adaptive
functioning of patients. The VSMS
measures the differential social capacities
of an individual. It provides an estimate of
social age (SA) and Social Quotient (SQ),
and shows high correlation (0.80) with IQ.
It is designed to measure social maturation
in eight social areas: Self Help General,
Self Help Eating, Self Help Dressing, Self
Direction, Occupation, Communication,
Locomotion and Socialization. Considering
its high correlation with IQ, SQ would be
considered wherever the patient is not able
to perform on SFBT.
4. Childhood Autism Rating Scale (CARS)13
The Childhood Autism Rating Scale
(CARS) is a 15 item behavioural rating
scale developed to identify children with
autism, and to distinguish them from
developmental disabilities other than
autism. It further distinguishes children
with autism in the mild to moderate range
from children with autism in the moderate
to severe range. The 15 CARS items
include ability to relate with others;
imitation; emotional response; body use;
object use; adaptation to change; visual
response; listening response, taste/ smell/
touch response and use; fear or
nervousness; verbal communication;
nonverbal communication; activity level;
level and consistency of intellectual
response and general impressions. In the
present study CARS would be used to
ascertain the severity of autism and to
obtain a profile of behavioural problems.
5. WHO Quality of Life BREF (WHO QoL-
BREF): In order to assess QoL, the Hindi
Delhi Psychiatry Journal 2012; 15:(1) © Delhi Psychiatric Society
DELHI PSYCHIATRY JOURNAL Vol. 15 No.1
version of the WHOQoL-BREF14 would be
used. The WHOQoL-BREF, an abbreviated
version of the WHOQoL-100, is a self-
administered questionnaire. It comprises of
24 items categorized into four broad
domains: physical health, psychological
well-being, social relationships and
environment. The items are rated on a 5-
point scale.
Procedure
Participants who fulfilled inclusion criteria
were provided with the necessary information about
the study and a written informed consent was
obtained from parents. After assessments with the
children (done prior to recruitment in the study),
WHOQoL BREF scale was administered on parents
of all the three groups. The data thus collected
following the above design and procedure was
interpreted using mean and standard deviation and
compared through ANOVA and post hoc analysis.
Results
The sample comprised of equal number of
males and females, all belonging to urban domicile,
with no significant differences. Tables 1 and 2 show
the comparison in all four domains of QoL in
mothers and fathers, respectively, for the three study
groups.
Table 1 shows the comparison of all the four
domains of QoL in mothers of children with MR,
autism and normal healthy controls. From the table
it is observed that there were highly significant
differences in all the four domains among the
mothers in all three groups. Post hoc analysis
revealed that there were no differences in any of
the assessed domains between mothers of children
with MR and autism. Also, mothers in both MR
and autism group had highly significantly impaired
QoL in all the four domains as compared to mothers
of normal healthy children.
Table 2 shows the comparison of all the four
domains of QoL in fathers of children with MR,
autism and normal healthy controls. From the table
it is observed that there were highly significant
differences in all the four domains among the
mothers in all three groups. Post hoc analysis
revealed that there were no differences in any of
the assessed domains between fathers of children
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Table-1: Comparison of Quality of Life (WHOQOL-BREF) between mothers of children with

Mental retardation (MR), Autism and Controls
QOL Domain Group1 Group2 Group3 F Post hoc

Physical 46.67±12.44 46.4±15.85 59.35±14.4 10.66** G1 vs G2- N.S

G1 vs G3 p<0.01
G2 vs G3 p<0.01
Psychological 35.05±9.41 40.525±12.96 55.35±14.48 22.07** G1 vs G2- N.S
G1 vs G3 p<0.01
G2 vs G3 p<0.01
Social 38.12±20.06 46.25±13.61 62.8±16.91 21.53** G1 vs G2- N.S
G1 vs G3 p<0.01
G2 vs G3 p<0.01
Environment 42.42±18.97 49.1±17.14 59.4±13.06 10.64** G1 vs G2- N.S
G1 vs G3 p<0.01
G2 vs G3 p<0.05

Table-2: Comparison of Quality of Life (WHOQOL-BREF) between fathers of children with

Mental Retardation (MR), Autism and Controls
Group 1 (MR) Group 2 (Autism) Group 3 (CG) F Post hoc

Physical 56.4±12.2 53.55±13.77 61.85±14.03 3.985* G1 vs G2- N.S

G1 vs G3 p<0.05
G2 vs G3 p<0.05
Psychological 42.3±10.43 46.1±10.37 57.32±14.32 17.47** G1 vs G2- N.S
G1 vs G3 p<0.01
G2 vs G3 p<0.01
Social 49.55±21.2 49.52±14.88 61.22±12.24 6.62** G1 vs G2- N.S
G1 vs G3 p<0.01
G2 vs G3 p<0.01
Environment 50.57±18.90 53.22±14.15 59.97±12.51 3.95* G1 vs G2- N.S
G1 vs G3 p<0.01
G2 vs G3 p<0.05

with MR and autism. Also, fathers in both MR and
autism group had significant impairment in all the
four domains of QoL as compared to mothers of
normal healthy children.
Discussion
The presence of a child with developmental
disability in the family calls for a lot of adjustment
on the parents and other family members 15 .
Although the unmet needs of parents of children
with disabilities are universally linked to stress,
there could be some cultural differences in the way
this stress impacts parents and their quality of life.
In the present study, it has been found that
parents of children with autism and mental
retardation showed a significant impairment of QOL
as compared to the normal healthy control group.
In particular, significant differences in the MR and
autism groups compared to controls were present
174 Delhi Psychiatry Journal 2012; 15:(1) © Delhi Psychiatric Society
both in mothers and fathers, with impairment in all
the four assessed domains of QoL- physical domain,
psychological domain, social domain and environ-
ment domain.
More specifically, mothers of children with MR
and autism displayed lower physical health, impair-
ment in social relationships, in their psychological
state and poorer perception of their environment.
Fathers of children in both MR group and
autism group displayed a worse perception of their
psychological state and impairment in social
relationships. Although there was impairment in the
physical domain on the QoL of these two groups
but it was lower as compared to other two domains.
With respect to the environment domain, fathers in
all the three groups differed minimally from each
other. These findings are in accordance with
previous studies, reporting parents of children with
autism, particularly mothers, experience more stress
APRIL 2012
than parents of typically developing children16.
The domain ‘physical well-being’ contains
questions about physical health, sleep, pain and
coping with every-day life and impairments in
socio-adaptive functioning in children with
disabilities along with increased dependency on
parents is time consuming and impairs daily
physical activities. In the present study also, it has
been found that both fathers and mothers in the MR
and autism group have impaired functioning in
physical domain of QoL. The impairment is more
pronounced in mothers of both the groups, which
could be probably because the mothers share more
responsibility towards looking after daily needs of
the child with disability.
The domain of psychological well-being’ is
associated with negative feelings of mood, sadness,
anxiety, and dissatisfaction with oneself. Both
mothers and fathers in the MR and autism groups
had highly significantly impaired QoL in this
domain. The psychological well-being of parents
of children in both the disability groups was
significantly associated with parental feelings of
isolation and with feelings of incompetence.
Further, the impairment in this domain may be
because these developmental disabilities are often
associated with anxiety about future of oneself and
the child, leads to sadness about the condition of
the child along with feelings of self-blame, guilt
and social shame.
The domain ‘social relationship’, which
especially contains questions about satisfaction with
personal relationships and with support by friends,
has also been found to be affected by the child’s
disability. In this domain also, there is highly
significant impairment in MR and autism group as
compared to normal healthy control group. Personal
relationships of parents are affected because of the
presence of a child with a chronic condition
requiring long term care and future concerns. Many
a times both parents consider themselves
responsible for the child’s condition and this guilt
of causing problems to the child and ones’ partner
impacts the personal relationships. Since, relatives
and friends themselves might not be aware of the
child’s condition and many a times, especially in
Indian context treat mental retardation and autism
as something taboo and to be ashamed of, rather
than providing support, they often avoid contact
Delhi Psychiatry Journal 2012; 15:(1) © Delhi Psychiatric Society
DELHI PSYCHIATRY JOURNAL Vol. 15 No.1
with family having a child with disability. On the
other hand, parents of child having disability, also
at times tend to avoid social situations so that their
relatives and friends do not get to know of their
child’s condition and to avoid the embarrassment
they may feel because of child’s dependency and
behavioural problems. This may have been the
cause for parents of children on both the
developmental disabilities groups considering their
social relationships as non supportive and thus,
having lower perceived social quality of life than
the parents of normal healthy children.
The domain of ‘environment’ includes ques-
tions about physical safety and security, home
environment, health and social care and other
questions about one’s daily life. Because parents
of children with various developmental disabilities
often experience feelings of anxiety, danger, and
constant worry towards the physical security of their
child, this could have attributed to their lower scores
on the environment domain. From an environmental
stand-point, the differences in QoL between parents
of children with both the developmental disabilities
studied in the present research and parents of normal
healthy control group children could be attributed
to the environmental effects (greater stresses and
burden of having a child with developmental
disorders: limited socio-adaptive functioning,
difficult behaviours, including temper tantrum and
aggressive, self-abusive, destructive, ritualistic,
impulsive and self-stimulatory behaviours; limited
social skills and judgment that often result in being
teased or rejected; the strain of not understanding
their children or knowing what was wrong with
them; needed constant supervision and assistance
with daily living skills; financial strains; the
problems associated with school and related
services; difficulty obtaining a correct diagnosis;
stressful experiences with professionals; worries
about the future, including living arrangements and
sexuality; ineffective services and unmet needs;
poor communication and coordination among
services providers16.
The present findings have practical implica-
tions for assessing the health needs of population
(patient, caregiver, non-patient) for the planning of
clinical care of individual patients and for resource
allocation.
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DELHI PSYCHIATRY JOURNAL Vol. 15 No.1
Conclusion
Parents of children with MR and autism seem
to display a higher burden and a significant
impairment in their quality of life. These finding
must be taken into account in policy making to
provide better and more specific supports and
interventions for this group of diseases.
More attention should be given to parents’ (and
in particular mothers’) needs. Social support and
different coping strategies should be developed to
respond positively to individual changing needs and
in buffering parents from the stress of having a child
with disability. New research should be conducted
to measure the effectiveness of these strategies. In
addition, effective and sustainable psycho-social
programs are needed to provide necessary support
for the special needs of the children and their
families.
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