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ISSN- 0301-1216

Indian J. Prev. Soc. Med. Vol. 44 No.1-2, 2013

A STUDY TO ASSESS THE DISABILITY IMPACT ON PARENTS OF CHILDREN WITH


MENTAL RETARDATION STUDYING IN TWO SPECIAL SCHOOLS OF DELHI
Akhilesh Kumar Malhotra1, AK Sharma2

ABSTRACT
Objective: To assess the disability impact on parents of mentally retarded children studying in two special school of
Delhi. Material and methods: A cross-sectional study was conducted. Parents of 100 mentally retarded children
enrolled in these schools are interviewed. Univariate analysis was done using SPSS software to know causal
relationship between severity of mental retardation and various domains of modified NIMH disability impact scale.
Results: Majority of parents has disability impact as a result of social restriction and loss of support from relatives, in
laws, friends and neighbours more than half of parents felt that their health suffered because of mentally retarded
child. Majority of parent’s didn’t have disability impact in relation to physical care, career adjustment, financial
problem, embarrassment, negative effect on relationship with spouse, in laws, family members, friends and
neighbours, negative effect on siblinbgs, specific negative thought. Severity of mental retardation was found to be
significantly related with physical care, loss of support, specific negative thought.
Key words-Mental retardation, parents, disability impact

INTRODUCTION
Birth of child with mental retardation in a family is usually an unanticipatory and unwelcome event. The parents are
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confronted with not only feeling of guilt, grief, resentment and shock but also new role and responsibilities which are largely
unknown to them. Social stigma that itself attaches to the family and frustration and helplessness for not able to cure the
condition leave parents sad and depressed. They have to make changes in their lifestyle, restriction are imposed on their
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social life , they have less time for themselves, their leisure and recreational activity get compromised. This causes stress
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which leads to psychological morbidity and disturbances in marital harmony. They seek support from the relatives,
neighbors and friends which they seldom get. The impact is not only on the parents but also on the other family members
including siblings. Infact upbringing and emotional development of the mentally retarded child is also affected by family
responses. Distress felt by parents not only due to stressful situation but also dependent on congenial appraisal of stressful
situation, coping skills of the parents and coping resources available. The present study was undertaken to assess the
disability impact and effect on parents of mentally retarded children studying in two special schools of Delhi.

MATERIAL AND METHODS


The present study was cross-sectional study conducted in two special schools for disabled children in Delhi (Ankur
Model School and Asha AWWA School) from March 2003 to April 2004. In Ankur Model School, there were 92 mentally
retarded children, out of which 19 are residing in hostel. There is a part time visit by medical professionals twice a week.

_______________________________
1. Assistant Professor, Department of Community Medicine, Saraswati Institute of Medical Sciences
2.

Indexed in : Index Medicus (IMSEAR), INSDOC, NCI Current Content, Database of Alcohol & Drug Abuse, National Database in TB &
Allied Diseases, IndMED, Entered in WHO CD ROM for South East Asia.
AK Malhotra et al Disability impact on parents of children with mental retardation

In Asha, AWWA school there were 39 mentally retarded children and 41 hearing handicapped children. There was no
hostel facility available and visit by medical professional in the school. Parents of mentally retarded children studying in above
mentioned schools were study subjects. Only those parents were interviewed who were living with mentally retarded children
at home. Due to time and resource constraints sample size was restricted to parents of 100 children.

A pretested, structured , study proforma, modified NIMH disability impact scale was administered by first author. This
NIMH disability impact scale was developed by National Institute of Mentally Handicapped, Secundarabad. Identification data
sheet consist of child characteristics-name, age, sex, level of mental retardation. Parent characteristics include relationship
with index child, age, education, percapita income, occupation. In modified NIMH disability impact scale there are 11 areas:
Physical care, health problems, career adjustment, loss of support, financial problems, social restrictions, embarrassment,
negative effect on relationship, negative effect on siblings, specific negative thoughts, positive impact. Data was tabulated and
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analysed using SPSS software. Univariate analysis( using test)) was done to know the casual relationship between severity
of mental retardation and various domains of modified NIMH family disability impact scale( p<0.05 was considered statistically
significant).

RESULTS AND DISCUSSION


Table-1: Distribution of mentally retarded
children by age and sex
The present study comprised parents of 100 mentally retarded children
studying in two special schools of Delhi. Table-1 shows the distribution of Age Female Male Total
(years) (%)
mentally retarded children by age and sex. Male children outnumbered the
<6 0 2 2.0
female children by 3:1. Majority of children belongs to 9-12 years age group
6 to 9 8 15 23.0
(30%) followed by 6-9 (23%) and 12-15 (22%) years age groups respectively.
9 to 12 10 20 30.0
More than half of children belong to moderate category of mental 12 to 15 0 22 22.0
retardation (59%), while 28% belongs to mild and 13 % belongs to severe 15 to 18 4 11 15.0

category of mental retardation. 18 > 3 5 8.0


Total 25 75 100.0

Following are parents’ responses to modified NIMH disability impact scale

1. Physical care: As the child is studying in special school disability impact in relation to physical care is less. About 70-80%
of parents felt that they didn’t have disability impact in relation to physical care. As severity of mental retardation
increases, disability impact in relation to physical care is also increased. This observation is statistically significant.

2. Health problem: 57% of parent felt their health suffered because of mentally retarded child. Mental worries and tension
because of mentally retarded child lead to psychosomatic illness in them.

3. Career adjustment: A large majority of parents didn’t have disability impact as a result of making career adjustment for
mentally retarded child. 15% have to make career adjustment in relation to job timing.

4. Loss of support: Parents suffered loss of support more from relative (40%), in laws (39%), friends (39%) and neighbors
(38%). Loss of support was least from the spouses (25%). As the severity of mental retardation increased disability impact
in relation to loss of support also increased. This observation is statistically significant.

5. Financial problem: About 1/3 of parents faced financial problems because of mentally retarded child in the family.

Indian J. Prev. Soc. Med Vol. 44 No. 1-2 25 January –June, 2013
AK Malhotra et al Disability impact on parents of children with mental retardation

6. Social restriction: About half of parents had disability impact Table-2: Disability impact in relation to physical care
by severity of mental retardation
as a result of restrictions from attending social functions and
Severity Yes No Total
41% difficulty in pursuing leisure and recreational activity. N=100
No. % No. %
7. Embarrassment/ridicule: Majority of parents (71%) did not Mild 1 3.5 27 96.5 28
feel embarrassment because of mentally retarded child. Moderate 24 40.6 35 59.4 59
Severe 11 84.0 2 16.0 13
8. Negative effect on relationship: Majority of parents didn’t 2
( =26.7, df=2, p<0.001, Highly Significant)
have disability impact in relationship with spouse (88%),
neighbors (85%) family members (83%) friends (83%) and in Table-3: Disability impact in relation to loss of
laws (82%). support by severity of mental retardation
Severity Yes No Total
9. Negative effect on sibling: Majority of parents’ didn’t have No. % No. %
N=100
disability impact in relation to negative effect on sibling. Mild 14 50.0 14 50.0 28
Parents reported that studies of sibling get affected (26%) and Moderate 46 71.0 13 29.0 59
less time to them from parents (23%). Severe 8 62.0 5 38.0 13
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10. Specific negative thoughts: About 60% of parents did not ( =7.11; df=2; p<0.05 ; Significant)

have any negative thought. As the severity of mental


Table-4: Disability impact in relation to specific
retardation increases disability impact in relation to specific negative thoughts by severity of mental
negative thought also increases. This observation is retardation
Severity Yes No Total
statistically significant. N=100
No. % No. %
11. Positive impact: On the contrary, some parents had some Mild 8 28.0 20 72.0 28
positive impact also. Improves tolerance (45%) was most Moderate 24 40.6 35 59.4 59
common. Severe 9 69.0 4 31.0 13
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( =6.074; df=2; p<0.05 ; Significant)

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The finding of present study is consistent with previous research. A longitudinal study conducted by Seltzer et al
contrasted parents who had a child with development disability, a serious mental health problem and a normative comparison
group. This study depicts that parent who had child with developmental disability has lower rate of employment (worked fewer
days in a year) and lower rate of social participation (fewer visits to friends).
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A study conducted by Emerson et al in UK compared mothers of children with intellectual disability with mothers of
children without intellectual disability. Mothers of children with intellectual disability reported that their child’ difficulties resulted
in greater social impact( contributed to break up with previous partner, strained my relationship with other children, strained
their relationship with their brother and sister, caused them problems with other members of family, caused them problem with
friends, disrupted their social and leisure activities, disrupted leisure and social activity with child, disapprove or avoid me
because of my child’ difficulties and psychological impact( embarrassed, worried, depressed, tired, physically ill, seen a doctor
because of difficulties coping with my child). Some of them have reported positive impact (strengthen their relationship with
their partner, strengthen their relationship with other children and their brother and sisters) also. A study conducted by
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Padeliadu et al in Greece reported that mothers of children with Down Syndrome face significantly more time demands for
recreational and educational activities than comparison group (mother of non-disabled children). Furthermore it appeared that
their stress was significantly related to recreation and education time demands.

Indian J. Prev. Soc. Med Vol. 44 No. 1-2 26 January –June, 2013
AK Malhotra et al Disability impact on parents of children with mental retardation

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A study by Chandorkar et al compared three group of subjects. First group comprised of parents of twenty students
of school for mentally handicapped children. The second group comprised of parents of ten mentally retarded children who
has not attended any special school for mentally retarded in the past and third group comprise of twenty normal school going
children. The results of study depicts that parents of mentally retarded children had higher prevalence of psychological
morbidity than parents of normal children. Commonest psychiatric disorder was dysthymia followed by generalized anxiety
disorder and moderate depression. This study further depicts that mother of mentally retarded children are more affected than
their spouses. And those whose child has not received any formal specialized help were much more psychologically disturbed
than those whose children were normal.
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A study conducted by Upadhyay et al in Varanasi city depicts that parents of moderately retarded children when
compared to mildly retarded children score higher for all psychosocial problems associated with providing care to children
such as family problems, psychological problems, physical problems, social problems, school adjustment problems, financial
problem, child rearing and management problem and professional advice problem. This observation is statistically significant
regarding various psychosocial problems except social problem.

CONCLUSION

It may be concluded that impact of mental retardation is never restricted to mentally retarded individual, but extends
to involve the families also. Although families are affected by the presence of mentally retarded individuals, but also upbringing
and satisfactory emotional development of child is affected by family responses. Approaches that focus on the family are more
effective in care, management and rehabilitation of individuals than approaches that focus only on child with mental
retardation.

REFERENCES

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3. Seltzer MM, Greenberg JS, Floyd FJ, Pettee Y, Hong J. Life course impacts of parenting a child with a disability.
American Journal of Mental Retardation 2001, 106(3):265-286.
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Psychiatry 2000, 42(3) : 271-274.

5. Olsson MB, Hwang CP. Depression in mothers and fathers of children with intellectual disability. Journal of Intellectual
Disability Research 2001, 45(6) : 535-543.

6. Emerson E. Mothers of children and adolescents with intellectual disability, social and economic situation, mental health
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7. Rastogi CK, Personality pattern of parents of mentally retarded children. Indian Journal of Psychiatry 1984; 26(1), 46-50.

8. Padeliadu. S. Time demands and experienced stress in Greek mothers of children with Down’ syndrome. Journal of
intellectual Disability Research 1998; 42(2):144-153

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level of mental retardation of children. Indian journal of social science research 2009, 6(1):103-112

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