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org (E-ISSN 2348-1269, P- ISSN 2349-5138)

“STUDY TO UNDERSTAND THE MENTAL

WELLBEING OF MOTHER’S OF
CHILDREN’S WITH SPECIAL NEEDS
DURING COVID-19 PANDEMIC”
Authors: Mr. Narsinh Chaudhary1, Dr. Madhu singh2, Mis Jankeedevi Vaishanav3, Mr. Jayvant Makwana4.
Designation: Author 1: Assistant Professor at B.M institute of Mental Health,
Author 2: Director of B.M Institute of Mental Health, Ahmadabad, Gujarat, India.
ABSTRACT:

BACKGROUND: Mothers of children with Intellectual Disability (ID) and Autism Spectrum Disorder
(ASD) experience considerable amounts of psychological burden and impaired mental well-being as well
as coping style. Consequently, these have likely been adversely impacted by the COVID-19 outbreak due
to disruptions to the schedules of children with ID and ASD.

AIM: This study investigated depression, anxiety, and stress and also their impact on the coping style of
mothers of children with ID and ASD in Ahmedabad during the COVID-19 pandemic.

METHOD: The study obtained quantitative data from 160 mothers of children diagnosed with ID and
ASD were selected from various government and private sectors of Ahmedabad, Gujarat. Demographic
information included special children’s mother’s age, education, family types, occupation, and so on.
Children’s information about gender, age, and type of disability were also collected. The Depression
Anxiety Stress-21 scale (DASS-21) (Lovibond & Lovibond, 1995) was utilized to obtain data related to
special children mother's mental health symptoms and The Family Crisis Oriented Personal Evaluation
Scales (F-COPES), developed by Hamilton McCubbin, David Olson, and Andrea Larsen (1981) was
utilized to obtained data related to special children mothers the coping styles. Data were analyzed with
SPSS version 16.0. “t” test and correlation were used to examine collected data.

RESULT: The study found a significant level of age group, education, types of family, gender, and a group
of disability on DASS-21 scale and significance level of age group, education, types of family, gender, and
a group of disability on F-COPES. There was no significant correlation between DASS-21 and F-COPES.
Keywords: Intellectual Disability (ID); Autism Spectrum Disorder (ASD); COVID-19 pandemic; Mother of
special children; Depression; Anxiety; Stress and Coping Style.

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1. Introduction

The world has been confronting an outbreak of a novel corona-virus infectious disease (COVID-19) that
has expeditiously spread globally from its first detection in December 2019 at Wuhan city of central Hubei
province of China (Holshue et al.,2020; Wang, Pan et al., 2020; Wang, Hu et al., 2020). Due to the spread
of the virus to multiple countries, on 30 January, 2020 the World Health Organization (WHO) declared it is
a public health emergency and on 12 March, 2020 announced it is pandemic (Organization WHO, 2020;
WHO,2020).

The coronavirus disease (COVID-19) pandemic has impacted 1.38 billion children worldwide due to
closures to schools, daycares, extracurricular programs, and outdoor recreational spaces (Cluver et al.,
2020; World Health Organization, 2020). Parents are similarly affected, with many experiencing changes
to income, employment, and childcare needs (Statistics Canada, 2020). As a result of the measures
implemented to halt the transmission of COVID-19, millions of families have experienced significant
changes to their social functioning through self-isolation, physical distancing, or additional restrictions on
social interactions.

COVID-19-related measures are expected to have widespread impacts on family psychosocial functioning.
These measures may increase risk for maternal depression given established risk factors for depression
onset, including high levels of economic stress, relationship distress and conflict, lower social support,
greater number of young children, and children with increased needs (Gelaye et al., 2016; Rahman et al.,
2013; Wachs et al., 2009).

Many studies have reported the mental health status of medical staff and the general public; however, few
have focused on more vulnerable groups such as children with disabilities (i.e., special needs children) and
their parents. In this situation, caring for children with special needs such as Autism Spectrum Disorder
(ASD), Attention Deficit Hyperactive Disorder (ADHD), Cerebral Palsy (CP), Intellectual Disability (ID),
Learning Disability (LD) and chronic disability may be more challenging for caregivers (parents and other
family members).

The 2011 Indian census indicates 2,042,000, age of 0-6 year’s children suffer from chronic disability with a
prevalence rate of 1.24% (Disabled persons in India statistical profile, 2016). Often these children require
rehabilitations like physiotherapy, occupational therapy, speech and language therapy, behavioural therapy
and/or special education either at hospitals or clinics (Mishra & Siddharth, 2018). However, due to virus
containment measures taken, children with special needs are not able to be physically supported by the
rehabilitation care providers. In these circumstances, the role of caregivers of children with special needs
become not only to physically care them but also to provide adequate rehabilitation at home to maintain
and/or improve their physical and mental function. Due to the disruption of normal routine and social
uncertainty, it is expected that children with ASD and LD will show increased frustration (The Lancet
child-adolescent, 2020). Therefore, caregivers may play an important role in creating a daily schedule of

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rehabilitation sessions to help reduce any increase in their anxiety. Instead, parents have to undertake
multiple tasks, including parenting, education, rehabilitation, and training, which could increase their
parenting stress and cause mental health problems such as anxiety, depression, and marital discord and
sleep problems.

People with intellectual disabilities are a group at specific risk during the COVID-19 corona virus
pandemic because of marked mental and physical health multi morbidity (Cuypers et al., 2020; Turk,
Landes, Formica, & Goss, 2020). The social distancing and isolation measures implemented to manage the
pandemic are known to impair mental health (Brooks et al., 2020; Torales, O'Higgins, Castaldelli-Maia, &
Ventriglio, 2020), and this burden is also likely to be greater for people with intellectual disabilities,
because they have generally poorer coping abilities (Courtenay & Perera, 2020). Caring for people with
intellectual disability is stressful, leading, even under normal conditions, to high levels of perceived stress
and burnout (Panicker & Ramesh, 2019; Patton, Ware, McPherson, Emerson, & Lennox, 2018; Rose,
2011; Willner & Goldstein, 2002).

Deficits in social communication and behaviours that are repetitive and restrictive are characteristic of
persons with ASD (Johnson et al., 2019). Moreover, children with ASD may have challenges with their
behaviour. For instance, they may have challenging eating habits such as, selective eating of food based on
presentation, texture, or type, or they may display disruptive behaviours at mealtime (Bandini et al., 2010;
Curtin et al., 2015).

In general, parents of special needs children have to continually seek for more special treatment, medical
equipment and other educational services, which more likely to lead to higher economic burden. In the
meantime, one of the parents should always be a main caregiver for the special needs child who may cause
an overall decline in the family’s ability to work and reduce family income. Therefore, parents of special
needs children were always experience poverty because of lower economic and social status or
unemployment as compared to their counterparts, which exacerbates mental health problems.

2. Material and Methods

2.1 Study design and participants:

Total 160 mothers of children diagnosed with ID and ASD were selected from various government and
private institutes of Ahmadabad, Gujarat. No specification was made regarding the existence of co-
morbidities in the children, such as, Attention-Deficit Hyperactivity Disorder, Cerebral Palsy or Conduct
Disorder.

For inclusion in the study, participants were required to be: age between 18 to 50 years; only special child’s
mother; minimum level of education of mother 5 th standard; living in the Ahmadabad; and their special
child age between 3 to 18 years.

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2.2 Ethical statement:

The study and protocol was approved by the institutional committee, B.M Institute of Mental Health,
Ahmadabad, and Gujarat. Informed consent was obtained from each participant prior to starting data
collection.

2.3 Outcome measures:

2.3.1 Demographics:

Demographic information included special children’s mother’s age, education, family types, and
occupation and so on. Children’s information about gender, age and type of disability were also collected.

2.3.2 Depression, Anxiety and Stress Scale (DASS-21):

To assess mental health symptoms during the pandemic outbreak, Depression Anxiety Stress-21scale
(DASS-21) was used (Lovibond & Lovibond, 1995). Participants responded to a 21 item Depression
Anxiety Stress Scale (DASS-21). The scale is divided in to three subsets (stress, anxiety and depression)
and each domain contains 7 items. The respondent scored the response on a 4 item linkert rating scale with
0 “did not apply to me at all” to 3 “applied to me very much or most of the time”.

2.3.3 The Family Crisis Oriented Personal Evaluation Scales (F-COPES):

During Covid-19 pandemic to assess the coping styles of special children’s mothers. The Family Crisis
Oriented Personal Evaluation Scales (F-COPES), developed by Hamilton McCubbin, David Olson, and
Andrea Larsen (1981), was created to identify problem solving and behavioural strategies utilized by
families in difficult or problematic situations. The scale is divided in to five subscales (Acquiring Social
Support, Reframing, Seeking Spiritual Support, Mobilizing Family Support and Passive Appraisal). The
participants responded to a 30 coping behaviour items. The respondent scored the response on a 5 item
likert rating scale with 1 “Never” to 5 “Always” for each item in the F-COPES instrument.

2.4. Data analysis:

Data were analysed with SPSS version 16.0. “t” test and correlation were used to examined collected data.
“t” test was used to find out mean, difference between different level of age group, gender, education,
family types, types of disability. Pearson correlation testing was conducted to find the relationship between
DASS-21 and F-COPES.

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3. Result

Table 1

Mean SD and t value of different factors on DASS-21.

Factors N Mean SD t Level of Sig.

Age Group
20-35 years 72 18.6388 12.4054 2.2183 0.05
36-50 years 88 14.3181 12.1338
Education
College 77 17.1168 13.5471 0.8382 NS
School 83 15.4698 11.2719
Type of Family
Joint 74 16.3513 12.0517 0.0837 NS
Nuclear 86 16.1860 12.7745
Gender
Boys 107 16.5887 12.6311 0.4715 NS
Girls 53 15.6037 12.0325
Groups
ID 94 13.7978 10.5532 3.218 0.05
Autism 66 19.9696 13.6872

Table 1 depicts mean, SD, t value and significance level of age group, education, types of family, gender,
and group of disability on DASS-21 scale. There was no significant difference found between college
studied mothers and school studied mother, mother who lived in joint family and nuclear family, mother of
boy child and girl child on DASS-21 scale. On the other hand, significant difference found between age
group of 20-35 years and 36-50 years on DASS-21. Similarly, significance difference found between
mother of ID child and mothers of autism on DASS-21.

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Table 2

Mean SD and t value of different factors on F-COPES

Factors N Mean SD t Level of Sig.

Age Group
20-35 years 72 102.9305 16.9351 1.9701 0.05
36-50 years 88 97.0113 20.3754
Education
College 77 101.0909 17.4545 0.9037 NS
School 83 98.3614 20.4871
Type of Family
Joint 74 105.1891 18.3002 3.3245 0.05
Nuclear 86 94.9302 20.4059
Gender
Boys 107 98.9065 19.2106 0.7228 NS
Girls 53 101.2264 18.8920
Groups
ID 95 100.9894 19.9032 1.0628 NS
Autism 65 97.723 17.8321

Table 2 depicts mean, SD, t value and significance level of age group, education, types of family, gender,
and group of disability on F-COPES. There was no significant difference found between college studied
mothers and school studied mothers, mother of boy child and girl child, mother of ID child and mother
autism on F-COPES. On the other hand, significant difference found between age group of 20-35 years and
36-50 years on F-COPES. Similarly, significance difference found between mother of joint family and
nuclear family on F-COPES.

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Table 3

Correlation between DASS-21 and F-COPES

Variables N Mean ‘r’ Level of Sig.

DASS-21 160 1.3438 0.0199 NS
F-COPES 160 13.475

Table 3 depicts mean, correlation and significance level. The correlation between DASS-21 and F-COPES
found to be 0.0199. There was no significant correlation between DASS-21 and F-COPES.

4. Discussion

Findings of DASS-21 revealed that, there was significant difference found between age group of 20-35
years and 36-50 years it could be because of their years of experience in handling their children. Also,
significant difference was there between mother of ID child and mothers of autistic child. It could be
because of the individual characteristics of ID and Autism in child also one of research study supporting to
this study, they study indicate that greater stress levels are experienced by families with children with
autism spectrum disorder (ASD) than those with children with any other developmental disability (e.g.,
Bonis, 2016; Cooke, Smith, & Brenner, 2020; Da Paz, Wallander, & Tiemensma, 2018; Giovagnoli et al.,
2015; LeBlanc, Lazo-Pearson, Pollard, & Unumb, 2020; Shepherd, Landon, Taylor, & Goedeke, 2018;
Zaidman-Zait et al., 2017). . As we know autistic children has behaviour and sensory issue more than
children of ID.

As we saw in the results, there was no significant difference between college studied mothers and school
studied mother, mother who lived in joint family and nuclear family, mother of boy child and girl child on
DASS-21 scale. There are multiple factors that can explain why significant difference was not found
between these groups. Such as education does not play large role in handling children with disability,
different factors of joint and nuclear family doesn’t affect on mothers of disable children, it is mostly
similar difficulties and process to handle any gender with disability.

On the findings of F-COPES, there was significant difference found between age group of 20-35 years and
36-50 years. It could be because of their life experience of handling day to day issue and cope up with
them. Also, significance difference found between mother of joint family and nuclear family. It could be
because in the joint family mothers get more help and support from most of the members of family in daily
life activities which can be result in better coping than mother of nuclear family. Even the frequent
regulatory problems of children, such as sleep problems, are also associated with worse mental health
condition among parents. It is noted that children’s behaviour problems and parenting stress always occur
together to predict the mental health of parents. If live in joint family so these types of behavior it can be
reduced either divided in family member so mother stress released.

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On the other hand, there was no significant difference found between college studied mothers and school
studied mothers, mother of boy child and girl child, mother of ID child and mother autism on F-COPES. It
could be because they use their day to day life experience more than what they learnt during their education
period and most of the mothers had similar issues and difficulties in their special child.

As described in the results there was no significant correlation between DASS- 21 and F-COPES. It could
be because stressors related to covid-19 were unique in nature and different for everyone. It was new for
everyone and everyone was facing difficulties in handling daily life stressors.

Based on the above research, we speculated that the mental health problems of parents of children with
disabilities may be magnified during the COVID-19 pandemic. These parents may require mental health
interventions through appropriate measures; therefore, it is necessary to comprehensively estimate these
parents’ mental health status and the key predicting factors.

5. Limitation:

There are some limitations that should be considered when interpreting this study’s findings. We examined
three types of disabilities; thus, the results cannot be generalized to parents of other special needs children.
We examined only mothers of special children. Other socio-demographic characteristic should be
examined in this context. The Small sample size because of as is known, the large sample size reduces the
sample size‐related errors, thus, including a sufficient number of participants in the sample is of great
importance in achieving a reliable factor analysis.

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