The International Journal of Indian Psychology

ISSN 2348-5396 (Online) | ISSN: 2349-3429 (Print)

Volume 9, Issue 3, July- September, 2021
DIP: 18.01.175.20210903, DOI: 10.25215/0903.175
http://www.ijip.in
Research Paper

Mental Health Issues among Parents of Children with and

without Intellectual Disability

Gavneet Kaur Pruthi1*

ABSTRACT
The term Intellectual disability is a diagnostic term denoting the group of disconnected
categories of mental functioning such as idiot, imbecile, and moron derived from early IQ
tests, which acquired pejorative connotations in popular discourse. In the definition released
by AAMR (Luckasson et al., 2002), mental retardation was described as a disability
characterized by significant limitations both in intellectual functioning and in adaptive
behavior as expressed in conceptual, social and practical adaptive skills. The present study
assessed the mental health issues among parents of children with and without intellectual
disability. Parental Stress Index (PSI) (Abidin, 1995), was used to identify sources of stress in
parent child sub systems. The Norbeck Social Support Questionnaire (NSSQ; Norbeck et al,
1995), was used to assess rates of the extent of perceived emotional support. Family Support
Scale (Dunst et al, 1984) was used to assess the sources of family support available. Centre
for Epidemiological Studies Depression Scale (CED-D; Radloff, 1977) was used to assess the
current levels of depressive symptoms and mood. All these were administered on 120
mothers of Intellectual disabiled (ID) children aged 10 to 20 years and 120 mothers of
healthy children with average intelligence (AI) as controls. The results revealed that, overall
mothers of children with ID reported higher level of stress and are more depressed than
mothers of children without ID. On the other hand, in terms of social and family support,
mothers of ID children had significantly higher emotional support than mothers of children
without ID. This may also be a reflection of the fact that even though in India the structure of
the family has become nuclear; functionally families still operate within an extended social
network.

Keywords: Intellectual Disability, Care-givers, and Mental Health Issues

T he term Intellectual disability is a diagnostic term denoting the group of disconnected

categories of mental functioning such as idiot, imbecile, and moron derived from
early IQ tests, which acquired pejorative connotations in popular discourse. The term
intellectual disability acquired pejorative and shameful connotations over the last few
decades due to the use of the words retarded and retard as insults. There are many
definitions of mental retardation, most comprehensive among them is the one given by the
American Association of Mental Retardation (AAMR).

1
Clinical Psychologist, New Delhi, India
*Corresponding Author
Received: July 19, 2021; Revision Received: September 13, 2021; Accepted: September 26, 2021
© 2021 Pruthi G.; licensee IJIP. This is an Open Access Research distributed under the terms of the Creative
Commons Attribution License (www.creativecommons.org/licenses/by/2.0), which permits unrestricted use,
distribution, and reproduction in any Medium, provided the original work is properly cited.
 Mental Health Issues among Parents of Children with and without Intellectual Disability

In the definition released by AAMR in 2002 (Luckasson et al., 2002), mental retardation
was described as a disability characterized by significant limitations both in intellectual
functioning and in adaptive behavior as expressed in conceptual, social and practical
adaptive skills. This disability originates before age 18. Typically, an intellectual level that is
considered to be within the range of intellectual disability, as measured on an IQ test, is two
or more standard deviations (SDs) below the mean, resulting in a level of 70 IQ points or
lower when using an IQ test with a mean of 100 and a SD of 15.

All of us have many dreams and whenever a person loses his/her dreams, it brings major
changes in his/her personality and in his environment. Parents have many dreams about their
children and when a disabled child is born, parents go through dramatic changes, a state of
grieving that effect on parent’s health, attitude, personality, priority, values & beliefs, along
with it changes their routine activities. It is commonly observed that if one child is disabled
in family, parents usually suffer with different emotional and psychological problems. The
reasons of parental depression, anxiety and stress were explained by Sousa & Singhvi
(2011) i.e., “society considers parenting is a positive thing, but it views the birth of a
disabled child negatively. This attitude by society produces stress among family members.
The marital relationship may suffer excessively due to the stresses of guilt, shame, blame
and anxiety.

Objective
• The main objective of the study was to compare stress, copying and depression
among parents of children with and without intellectual disability.

METHODOLOGY
Sample
The sample consisted of 120 mothers of Intellectual disability (ID) children aged 10 to 20
years and 120 mothers of healthy children with average intelligence (AI) as controls. Criteria
for inclusion in the intellectually disabled children were, children with less than IQ of,
(below 70, and no other physical disabilities). Parents of children who screened positive for
intellectual disability (meeting DSM-V- criteria for intellectual disability, assessed and
diagnosed by Clinical Psychologist, were enrolled in this study. Parents were included in
this study if they were 1) aged 25 years and above; 2) were the main careers for an
intellectually disabled child; 3) their child had a diagnosis of intellectually disability
according to DSM V criteria and as diagnosed by clinical psychologist and 4) gave consent
to participate in the study.

© The International Journal of Indian Psychology, ISSN 2348-5396 (e)| ISSN: 2349-3429 (p) | 1860
 Mental Health Issues among Parents of Children with and without Intellectual Disability

Mothers in the ID group were identified in the special schools in New Delhi and who had
children diagnosed with Intellectual Disability. Parents of healthy children were recruited
from the localities adjoining the special schools in New Delhi. Mothers in the two groups
were matched on age, education, family income and age of the child. The mother’s mean age
was 27.28 years (SD=4.07). Majority (80%) had up to 12 years of formal education, were
from urban (83%), nuclear families (74%) and had an average monthly income of Rs 7000.

Tools Used
The following tools were used for the present study:
Socio-demographic Performa: A special Performa designed for this study was used to
gather socio-demographic details about the parents.

Measures
Parents were assessed on following measures:
• Parental Stress Index (PSI) (Abidin, 1995): The Parental Stress Index is a 120-
item clinical and research questionnaire designed to identify sources of stress in
parent child sub systems. The PSI yield’s stress score in three domains, child
domain, parent domain, and life stress. In the child domain, subscales measured are
child related stressors such as child’s adaptability, acceptability of child to the
mother (acceptability), demanding nature, moodiness, and distractibility (demanding
nature, child mood and distractibility-hyperactivity) and degree to which the mother
found the child reinforcing (reinforces parent). In the parent characteristic domain,
sub scales measures are parent attachment to the child (attachment), restrictions
imposed by the parental role (restriction of role), depression, social isolation,
relationship with spouse/ parenting partner, parental health and evaluation of their
competence (sense of competence). Finally, the life stress scale assessed the
occurrence of 19 stressful life events over the previous 12 months, weighted for their
potential impact. Eleven of the 19 life events can be considered negative (e.g death
of the family members). The PSI has acceptable internal consistency, with alpha
values ranging from .60 to .95, and adequate test-retest reliability ranging from .70 to
.90 for a 3-4 week interval.
• The Norbeck Social Support Questionnaire (NSSQ; Norbeck et al, 1995): The
NSSQ is a self-administered measure that rates the extent of perceived emotional
support (e.g., affect, affirmation), aid (tangible support) and network structure (i.e.,
size and frequency of contact). In an interview format, the respondent is asked to
generate a list of significant others in his or her life (network size) and then to answer
a series of structured questionnaire that allow for measurement of parent’s
satisfaction with each person nominated. The NSSQ may be scored to obtain
information on the sources of support and the relative contribution of friends, family
members, and healthcare professionals to perceptions of support. Internal
consistency estimates range from .69 to .98 and test-retest reliabilities of .85 to .92
have been reported.
• Family Support Scale (Dunst et al, 1984): This scale consists of 18 sources of
family support, including parents, friends, spouse, coworkers, church/temple, and
professional agencies and so on. Parents are also invited to rate others if source of
support is not included in this questionnaire. Parents rated whether each source of
support was available and if available, whether the source was not at all helpful to
extremely helpful on a scale of 0 to 4. The final score was obtained by adding
together the ratings on each of the items.

© The International Journal of Indian Psychology, ISSN 2348-5396 (e)| ISSN: 2349-3429 (p) | 1861
 Mental Health Issues among Parents of Children with and without Intellectual Disability

• Centre for Epidemiological Studies Depression Scale (CED-D; Radloff, 1977):

The CES-D is a 20 item scale designed to measure current levels of depressive
symptoms and mood in the general population. Several fields studies have reported
internal consistency coefficients of .84 to .90 and there is evidence that CES-D
converges with other measures of depression.

Procedure
Following an initial screening, prospective subjects were contacted through special schools
and adjoining localities and requested to participate in the research program. After obtaining
consent, parents were interviewed using a structured format.

RESULTS AND DISCUSSION

Table 1: Comparison of Parental Stress between Mothers of ID Children and Mothers
of NID Children
ID Group(n=120) NID Group(n=120)
Variable Mean SD Mean SD t
Child Domain 131.01 19.81 111.52 17.74 8.03***

Adaptability (AD) 31.19 6.43 27.56 5.81 4.58***

Acceptability (AC) 18.77 5.04 14.25 4.31 7.45***

Demandingness (DE) 25.00 5.36 20.04 4.74 7.59***

Mood(MO) 12.83 3.85 11.02 3.57 3.77***

Distractibility/Hyperactivity 28.68 4.52 25.97 4.20 4.80***

(DI)

Reinforces Parent (RE) 14.83 3.63 12.65 3.12 4.29***

Parent Domain 149.33 26.53 120.81 21.14 9.21***

Depression (DP) 26.35 6.03 21.08 5.37 7.15***

Attachment (AT) 16.75 4.19 14.53 3.83 4.20***

Role Restriction (RO) 21.14 5.56 16.62 4.92 6.66***

Competence (CO) 37.52 6.21 29.25 6.66 9.95***

Isolation (IS) 15.41 4.77 13.10 2.98 4.51***

Spouse (SP) 18.42 5.82 14.80 3.97 5.63***

Health (HE) 13.70 3.80 11.37 3.31 5.07***

Total Stress 280.35 42.16 232.34 35.61 9.53***

Life Stress (LS) 16.40 9.16 14.65 7.26 1.64

© The International Journal of Indian Psychology, ISSN 2348-5396 (e)| ISSN: 2349-3429 (p) | 1862
 Mental Health Issues among Parents of Children with and without Intellectual Disability

Table 1 reveals that mothers of children with ID have significantly higher scores on all
dimensions of parental stress index except life stress, as compared to mothers of NID.

Table 2: Comparison of Social Support Between Mothers of ID Children And Mothers

Of NID Children

*p<.05 **p<.01 ***p<.001

Mothers of children with ID had a significantly higher score on CESD compared to mothers
of children of NID Children (M= 19.99, SD=9.60; M=9.75, SD=7.14; T=9.37, p< .001).

DISCUSSION
The findings of the study clearly shows that, overall mothers of children with ID reported
higher level of stress and are more depressed than mothers of children without ID. These
findings are in agreement with results of earlier studies by Shahida, (2011). This exploratory
study was designed to examine the stress faced by mothers of children with intellectual
disabilities in Pakistan and the impact of the stress on their family life. One hundred mothers
of children with intellectual disabilities in Karachi city, which is in Sindh region of Pakistan,
were invited and interviewed. The results indicate that mothers having children with
intellectual disabilities face high level of stress due to financial constraints, the inappropriate
behavior of the children with intellectual disabilities and lack of resources and therapy
facilities for their children. The mothers had symptoms of depression and negative
emotional feelings which caused a negative impact on their family life.

Mothers of children with ID reported feeling more depressed and had more difficulties with
their sense of competence, more restrictions to the parental role, more strain in their
relationship with their spouse and more negative effects on their health. They also rated their
children as more distracted, moody, unhappy, and demanding when compared to healthy
children.

© The International Journal of Indian Psychology, ISSN 2348-5396 (e)| ISSN: 2349-3429 (p) | 1863
 Mental Health Issues among Parents of Children with and without Intellectual Disability

In another study, poor sleep quality due to parental stress was found in parents caring for
children with developmental disabilities by Gallagher et al., (2010). Sixty-seven parents of
children with developmental disabilities and 42 parents of typically developing children
completed the Pittsburgh Sleep Quality Index, and measures of parental stress, child
problem behaviors, and social support. Parents of children with developmental disabilities
reported poorer sleep quality. Further, the majority of these parents met the established 'poor
sleepers' criterion. The strongest predictor of poor sleep quality was parental stress. This
finding withstood adjustment for a number of potential confounded.

Social And Family Support

On the other hand, in terms of social and family support, mothers of ID children had
significantly higher emotional support than mothers of children without ID. This may also
be a reflection of the fact that even though in India the structure of the family has become
nuclear; functionally families still operate within an extended social network. An
examination of specific sources of support revealed that mothers of children with ID also
relied heavily on healthcare professionals (e.g., speech therapist) than the family and friends
to meet their emotional support needs. As noted previously, mothers of children with ID
may withdraw from relationship that are stressful or unhelpful, leading to reduced network
size, but not overall quality of life received support.

The findings highlight that even though facilities to serve the needs of ID children are
increasing, the psychological needs of the mothers remains largely unaddressed. It is of
greater concern, since these mothers were selected from facilities where their children were
receiving help.

Mothers here have the stress of parenting a young child together with being a co therapist to
continue the stimulation of the child at home. If her own emotional needs go unrecognized
or unattended, it would negatively impact on the overall outcome. This is an area that merits
urgent attention. It not only underscores the need to have more trained professionals to
provide both individual and family based psychological interventions, but also highlights the
need to sensitize and train other professionals working with children with ID.

CONCLUSION
Half of parents taking care of children with ID experience psychological distress in India.
This study encourages health care providers to pay more attention to the mental health of
CGs. Further research should examine more detailed information regarding the disease and
disability of disabled children, their medical service use, and the quality and quantity of the
CGs’ social support to improve the method of providing supporting service for both children
with disabilities and their families. In our country where we have limited resources and it is
high time that we should realize that we may not develop holistic health of the patient if the
caregivers are overburdened. So, treatment providers should also shift their focus to the
mental health issues of the care givers of ID children.

REFERENCES
Abidin, R. R. (1995). Parenting Stress Index (3rded). Odessa, FL. Psychological Assessment
Resources.
American Psychiatric Association (1994). Diagnostic and statistical manual of mental
disorders (4th Ed). Washington, DC: American Psychiatric Association.

© The International Journal of Indian Psychology, ISSN 2348-5396 (e)| ISSN: 2349-3429 (p) | 1864
 Mental Health Issues among Parents of Children with and without Intellectual Disability

Gallagher, S., Phillips, AC., & Carroll, D. (2010). Parental stress is associated with poor
sleep quality in parents caring for children with developmental disabilities. Journal
of Pediatric Psychology, Volume 35, Issue 7, Pages 728–737.
Dunst, C. J., Jenkins, V., & Trivette, C. M. (1984). The Family Support Scale: Reliability
and validity. Journal of Individual, Family and Community Wellness, 1, 45-52.
Lenore, RS. (1977). The CES-D Scale: A self-report depression scale for research in the
general population. Applied Psychological Measurement, 1, 385-401.
Luckasson, R., Borthwick-Duffy, S., Buntinx, W.H.E., Coulter, D.L., Craig, E.M., Reeve,
A., (2002). Mental Retardation: Definition, Classification, and Systems of Supports
(10th Ed.). Washington, DC: American Association on Mental Retardation
Norbeck, JS. (1995). Scoring instructions for the Norbeck Social Support Questionnaire
(NSSQ). San Francisco, CA: University of California,
Shahida, S. (2011). Stress faced by Pakistani mothers of children with intellectual
disabilities and its impact on their family life. Journal of the International
Association of Special Education, v (12), n1, p71-78.
Sousa, A.D., & Singhvi, S., (2011) Depressive symptoms in mothers of children in cerebral
palsy. Journal of Pakistan Psychiatric Society. 8 (1), 1-18.

Acknowledgement
The author profoundly appreciates all the people who have successfully contributed to
ensuring this paper in place. Their contributions are acknowledged however their names
cannot be mentioned.

Conflict of Interest
The author(s) declared no conflict of interest.

How to cite this article: Pruthi G. (2021). Mental Health Issues among Parents of Children
with and without Intellectual Disability. International Journal of Indian Psychology, 9(3),
1859-1865. DIP:18.01.175.20210903, DOI:10.25215/0903.175

© The International Journal of Indian Psychology, ISSN 2348-5396 (e)| ISSN: 2349-3429 (p) | 1865