Article

Psychology and Developing Societies

Resilience in Parents 30(1) 19–43
© 2018 Department of Psychology,
of Children with University of Allahabad
SAGE Publications
Intellectual Disabilities sagepub.in/home.nav
DOI: 10.1177/0971333617747321
http://journals.sagepub.com/home/pds

Radhika Mohan1
Mrinmoyi Kulkarni2

Abstract
The objective of this study was to understand the experience of parents of
children with intellectual difficulties. In the context of a developing country
where social services are minimal, the onus of a child’s development lies
squarely with the parents. A total of 32 parents from Mumbai were asked
to describe their experience of raising a special child. The narratives were
analysed using the grounded theory method and the dominant themes
with respect to resilience that emerged were acceptance, cognitive adap­
tation, positive affect (PA), social support and self­efficacy. Based on these
themes a theoretical model, linking perception, cognition, emotion and
behaviour in the development of resilience, has been proposed.

Keywords
Chronic stress, coping, India, intellectual disability, parenting, resilience

Introduction
How do human beings respond to situations that need to be adapted to?
There appears to be a continuum of responses from thriving or very
successful adaptation to inability to adapt at the other end. Resilience

1
Assistant Professor, Department of Psychology, VES College of Arts, Science & Commerce,
Chembur, Mumbai, India.
2
Associate Professor, Department of Humanities and Social Sciences, IIT Bombay,
Mumbai, India.

Corresponding author:
Radhika Mohan, Assistant Professor, Department of Psychology, VES College of Arts,
Science & Commerce, Chembur, Mumbai, India.
E­mails: radhikshue@gmail.com; radhika.mohan@ves.ac.in
20 Psychology and Developing Societies 30(1)

is the ability to ‘bounce back’ from adversity (Friborg, Hjemdal,

Rosenvinge, & Martinussen, 2003; Klohnen, Vandewater, & Young,
1996). Resilience research shifts our focus from the stress response to
the coping response.
Research on resilience spans the last few decades; however, consen-
sus regarding a definition is lacking (Bonanno, 2004; Masten, 2007).
Research literature points to three major categories of definitions: resil-
ience as a trait, as a process and as an outcome. Resilience is defined as a
positive personality trait that enables individuals to bounce back from adver-
sity, to adapt, thrive and mature in the face of adverse circumstances
(Friborg et al., 2003; Klohnen et al., 1996). The process perspective describes
resilience as a dynamic process of adaptation to a risk setting that involves
interaction between risk factors and protective resources (Luthar, Cicchetti, &
Becker, 2000; Masten, 2007). Werner (1995) defined resilience as good
developmental outcomes despite high risk status, sustained competence
under stress and recovery from trauma. According to Ungar (2008), there
are both global as well as culturally and contextually specific aspects
that contribute to resilience.
Exposure to risk or adversity and indication of positive adaptation
are two dimensions closely associated with understanding resilience
(Luthar & Cicchetti, 2000). Research has attempted to identify protec-
tive factors that enable individuals to navigate in a positive direction
(Bronfenbrenner, 1979; Ungar, 2004). Masten and Obradovic (2008)
have defined resilience as ‘the capacity of a dynamic system to with-
stand or recover from significant challenges that threaten its stability,
viability or development’.
In this study, we aim to identify resilient response patterns among
parents of children with intellectual disabilities (ID) in India. The stress
of parenting children with ID is discussed, followed by the role of
contextual factors in influencing adaptation of parents and the cultural
context of India.

Parenting Special Children

Parenting special children is challenging because of the high level of
dependency as well as behaviour and health problems (Johnston et al.,
2003). Most parents experienced despair when informed about the diagnosis
(Turnbull et al., 1993 as cited in Seltzer, Greenberg, Flovd, Pettee, &
Hong, 2001). In comparison to mothers of typically developing children
Mohan and Kulkarni 21

(Singer & Floyd, 2006) mothers of ID children had poorer psychological

health (Al-Kuwari, 2007) and were at elevated risk of depression (Olsson
& Hwang, 2008). Based on themes arising from a content analysis of 60
books written by parents of children with a variety of disabilities, 70 per
cent of mothers and 40 per cent of fathers of severely disabled children
reported high levels of stress (Mullins, 1987) as well as more physical
symptoms than parents of normal children (Seltzer et al., 2001). High
parenting stress contributed to a worsening in children’s behaviour prob-
lems over time, which in turn worsened parent’s stress in pre-school
children with ID (Baker et al., 2003).

Contextual Factors
Socio-economic status (SES) and social support are two vital contextual
factors that influence the parenting experience. Higher SES can provide
some insulation from the harmful effects of stress, as it allows for more
control over the situation which leads to perceived control (Lachman &
Weaver, 1998). Financial constraints limited parent’s access to resources
(therapists, good schools, etc.), inadequate housing and lack of transport
facilities added to their stress (Sloper & Turner, 1993).
Social support ameliorated the effect of stressors (Johnston et al.,
2003; Middleton, 1995) and positivity in relationships, especially marital
relationships served as a protective factor against stress. Marital conflict
(Gallagher & Mechanic, 1996) or perceived marital adjustment (Gerstein,
Crnic, Blacher, & Baker, 2009) influenced stress levels. Contextual factors
such as social services, availability of special schools, access to professional
therapists and transport services influenced the parenting experience
(Blacher & Hatton, 2007).

Adaptation
Certain parents and families in spite of stressors adapted well and
appeared resilient in the face of challenges (Luthar, 2006). The presence
of both parents (Upadhyay & Havalappanavar, 2007) as well as person-
ality has been found to play a role (Taanila, Syrjälä, Kokkonen, &
Järvelin, 2002); mother’s optimism alleviated stress, while caring for
children with cerebral palsy (Bhan, Mehta, & Chhaproo, 1998).
22 Psychology and Developing Societies 30(1)

Family cohesiveness contributed to better coping (Mink, Nihira, &

Meyers, 1983). Families that coped differed from non-coping families in
seeking information, accepting the child, co-operating as a family and
receiving social support (Taanila et al., 2002). Religious affiliation was
another factor that helped alleviate stress and enhanced coping (Bhan,
Mehta, & Chhaproo, 1998; Skinner, Correa, Skinner, & Bailey, 2001).

The Indian Context

Indian culture could be broadly termed as collectivist where the indi-
vidual is subsumed by the family, the community and the larger culture
of the city/town. The general predilection is to blend in rather than stand
out. Family is very important and children are valued with motherhood,
holding an exalted position in traditional Indian culture (Kakar, 2012).
To have a child with a disability is a traumatic experience and often
mothers blamed themselves (Dalal & Pande, 1999). There was limited
awareness about the causes of intellectual deficits among the traditional,
rural and lower SES sections, and often metaphysical causation was
assumed where ‘one’s karma’ was held responsible (Dalal & Pande,
1999; Ghai, 2000; Navalkar, 2007). Negative attitudes towards the disa-
bled are common, and there is a general lack of understanding towards
mothers who bear the primary responsibility of caretaking (Mangala &
Ghai, 2000).
Mental health is fundamental to the overall well-being of individuals.
In a developing country context of poverty, inequality and multiple
stressors, the ability to survive and flourish requires resilience. Mumbai
known as the ‘maximum city’ has a population of about 13 million and
growing, where public transport, hospitals and most public facilities are
overburdened, beyond imagination. It is a very difficult city for the aver-
age person to survive and make a life. In this context, caring for a special
child is a doubly difficult situation, involving physical, financial and
emotional stress.

Rationale
The paucity of schools, therapists and special services results in par-
ents having to struggle to access services. Thus, the difficulty of par-
enting special children in a city like Mumbai is compounded. In this
Mohan and Kulkarni 23

context of adversity studying, the resilient parental response is of value

(Ungar, 2003).

Method

Aim
The present study aimed to understand resilient responses of parents by
analysing their narratives. This is a sensitive subject that may be experi-
enced very differently; hence, no attempt was made to impose any struc-
ture by asking predetermined questions, rather their story was elicited as
they wished to tell it.

Sample
The sample comprised of 32 parents (29 mothers and 3 fathers) of
children with intellectual disability who were attending special schools.
The children ranged in age from 6 to 28 (Table 1). All parents were
residents of suburban Mumbai and were drawn from all socio-economic
backgrounds with education ranging from some school to a masters
degree (Table 2a). They ranged in age from 25 to 70 (Table 2b) and most
mothers were homemakers.

Table 1. Child Demographics

Child Age Range No. of Children

6–10 5
11–15 13
16–20 7
21–25 4
25–30 3

Birth Order No. of Children

Only child 8
I born 9
II born 9
Last born 6
Source: Authors own work from narratives of parents interviewed.
24 Psychology and Developing Societies 30(1)

Table 2(a). Socio­economic Status of Participants

Income Range per Month Education No. of Parents

Below `15,000 ($242.415) Below high school 12
• `15,000 to `35,000 High school to college degree 12
($242.415 to $565.6340)
• `45,000 to `70,000 Bachelors and masters degree 8
($727.244 to $1131.268)
Source: Authors’ own work from narratives of parents interviewed.

Table 2(b). Occupation and Age of Parent

Number Number
Occupation of Parents Age Range of Parents
Home maker 12
Office assistant 2 21–30 2
Family business 3 31–40 8
Retired government staff 3 41–50 10
Domestic help 9 51–60 9
Teaching 3 61–70 3
Source: Authors’ own work from narratives of parents interviewed.

Procedure
School authorities were approached and briefed about the research study,
and permission to meet parents was sought. The schools then responded
with details of those parents who were willing to participate. Parents
were then contacted and an appointment was scheduled. Some schools
provided space and privacy to meet the parents in the school, whereas
some parents were met at their residence at their convenience. The data
was collected through narrative interviews by the first author. On meet-
ing parents, informed consent was taken, and they were asked to share
their experience of raising a special child. The interviews were audio-
taped and then transcribed. Pilot work was undertaken with two mothers.
No questions were posed to the parents other than minor clarifications or
a request to elaborate a little. The narrative consisted of the story they
chose to tell. Narratives were in English, Hindi and Tamil, languages that
both authors were comfortable with. Complete confidentiality was main-
tained with no names being associated with the narratives.
Mohan and Kulkarni 25

Analysis
The narratives were analysed qualitatively using the grounded theory
method (Strauss & Corbin, 1998). Grounded theory began with narrative
interviews with the researchers presuming that they knew little about the
way parents adapt. The interviews were audio-taped with the consent of
the parents and then were transcribed verbatim by the first author after
carefully listening to it. Narratives were analysed through open coding
techniques which included line-by-line analysis that identified constructs.
Constructs were then grouped together using axial coding which was fol-
lowed by the construction of a core category (Glaser & Strauss, 1967)
from the emerged concepts explaining the phenomenon. Both authors
coded the narratives independently and differences were resolved through
consensus as two researchers interpreting data independently lead to
more reliable results (De Vos, Strydom, Fouché, & Delport, 2002).

Results
The core categories that emerged are presented in the following and are
organised as individual factors, child-related factors and contextual
factors. Major core categories reported are presented in Table 3.

Table 3. Summary of Themes Reported by Parents

No. of Parents
Areas Reported
Individual factors
Perception 21
Cognition
Acceptance 21
Cognitive adaptation 19
Self­efficacy beliefs 17
Emotion 17
Positive affect 18
Emotional regulation
Behaviour
Adaptive behaviours 17
(Table 3 Continued)
26 Psychology and Developing Societies 30(1)

(Table 3 Continued)

No. of Parents
Areas Reported
Child-related factors
Physical mobility/independence 15
Positive child behaviour 13
Physical appearance 6
Social support
Support from family (partner) 13
Support from immediate family 12
Support from other child 13
Professional support (school) 12
Professional support (therapist) 14
Source: Authors’ own work from narratives of parents interviewed.

SES

Cognitive Self
Acceptance efficacy
adaptation
beliefs
Perceptions
Cognition
Adaptive
Social behaviour /
support
Emotion Resilience
Child-related
factors
Positive Emotional
affect regulation

Figure 1. Resilience Model

Source: Developed by authors based on the themes from the qualitative analysis.
Mohan and Kulkarni 27

Individual Factors
The themes identified could be organised under the rubric of perception,
cognition, emotion and behaviour (Figure 1).
Perception
Having prior knowledge (10) about the condition of mental retardation
or Down syndrome at the birth of the child as opposed to not having any
idea about such a condition (11) or a vague idea influenced perception of
the condition. How the diagnosis was conveyed played a role in influ-
encing parent’s perception, interpretation and response to the condition.
Some parents who were completely unaware and realised only much
later (at nine months) about their child’s condition were less distressed
about the initial developmental delays than those who knew about the
condition or were informed at birth.
Cognition
Acceptance
Acceptance of the child’s condition emerged as an important factor for
coping. About 21 of 32 narratives indicated acceptance after about 6 months
to a year. This occurred when parents stopped remonstrating with the
situation, let go off the negativity and took responsibility for the child
with greater composure.

If you spend your life mourning the fact that you didn’t get a normal child,
you may never be free to enjoy the very special child you have in hand.
Disability in my child is not a punishment for past karmas. It is a blessing for
doing good karmas.
If child misbehaves; accepting he is not well, helps me to sail through …
acceptance is important.
Initially, I was reluctant, but later started taking him to all functions we
attended, and I started responding positively to questions raised by others
about his conditions.

Cognitive Adaptation
Cognitive adaptation is the tendency to reappraise the initially threat-
ening situation in a more positive manner. The initial response to the
diagnosis was very negative and characterised by despair. However,
many parents, 19 parents (19 of 32) in this sample tended to gradually
28 Psychology and Developing Societies 30(1)

reappraise the situation after some months (6–12 months), when they
realised that the onus for the child’s improvement lay with them. In some
cases, this ability to reappraise the situation positively was observed
across the developmental life span of the child.

Woh mera rona dhona bhahot tha, yeh ladka paida hone ke baad, mera
emotional control … sab aa gaya (surprise … smile a long pause …).
Public speaking aa gaya! Yeh baccha plus points diya hai. (I used to
cry easily, but after the birth of this boy, I developed emotional control,
I learnt many things, I learnt how to speak in public, this child has given
me plus points.)
My child is far better, god is kind to me. Others kids even have physical prob-
lems, my child can talk, can move.
Let me do my karma well, give my best with full passion, as it is the task
assigned to me in this birth. Disability in my child is not a punishment for past
karmas. It is a blessing for doing good karmas.

Parents talked of how the birth of the child changed family dynamics.

The relationships have changed after the child has come, each one was living
for themselves … all focus on her now … a new goal and the family started
moving together.
Growing with … was an experience in itself. I learnt perseverance and patience.
This child bought us closer to god; praying together as a family every morning
has become a new ritual and that gives us peace.

Self-efficacy Beliefs
Efficacy is the ‘conviction that one can successfully execute the behav-
iour required to produce the outcome’ (Bandura, 1977). This quality was
seen in 17 narratives. Some parents shared that past experiences, prior to
the child’s birth, had prepared them to face ‘the challenge’. For many
parents, the child rearing experience itself gave them a feeling of mas-
tery and control. Seeing other parents in a similar situation at the school
provided them ‘vicarious experience from social models’ (Bandura,
1977, 1994).

[Y]ou cannot say somebody else will help, you have to help yourself … the
amount of trouble you put in, you will see that much outcome, and your effort
will not go waste.
Mohan and Kulkarni 29

Emotion
Trait Positive Affect (PA)
Trait PA may moderate the state negative affect (NA) as seen in some
cases. All the narratives expressed negative emotions, when the diagno-
sis was made. However, after the initial phase of negativity, some narra-
tives had more PA (17) than others, some were neutral (7) and some were
negative (8).

I am happy about what I have than to worry about what I don’t have.
I am not at all upset anymore; I like to face life with a smile.

The narratives with negative feelings were characterised by feelings of

pessimism, anger and shame. Anger was either directed towards the self,
significant others or towards their child.

Mei ek dhooki ma hoon. Bachpan se meri dhooki kahani hai. (I am a sad

mother, mine is a sad story from childhood.)
I used to be very upset. Now it has become routine and I am used to that
feeling.

Emotional Regulation (ER)

Emotional regulation enables the individual to adapt to the situation.
About 18 parents were aware of their fears and anxieties, and attempted
to resolve them by talking to their partner or family member. Some did
yoga, physical exercise or pursued their hobbies to distract themselves
and avoid rumination. Most of these parents realised the need to take
time off as an effective stress buster.

What is the use of getting angry, my daughter won’t understand, so won’t listen
nor my husband who is so negative already …. I channelise my anger … do
yoga … don’t let it bother me nor bother others around (from the narrative of
a mother whose husband is paralyzed).
I share my fears with my husband; we support each other, now I don’t
feel low.

Behaviour
Adaptive Behaviour
Adaptive behaviours were seen in the form of searching for the right
therapist, taking the child for therapy regularly despite difficulties and
30 Psychology and Developing Societies 30(1)

following up at home with the exercises suggested by occupational

therapist/speech therapist/special educator (17). Many parents volunteered
for activities in school and also to guide and support other parents.
Parents also started support groups in the community for the welfare of
children with ID.

After coming from work, I play with her outside, make her run slow as she
needed that to make her legs work for her, teach her how to blow in play way
as she can’t, I forget my tiredness.
I wanted to find the right diagnosis … spoke to many doctors … got therapy
for walking … after 4 yrs she walked, along with speech therapy for 3 yrs,
which made her now speak in monosyllables, treatment for epilepsy at a free
OPD was available …. I travel a lot to different places for therapy …. I will
do my best.

Child-related Factors
Physical Mobility and Level of Independence
Physical mobility and independence in the child contributed to positive
parental experiences. Children who were independent in terms of
routine activities (15) were easier to handle both at home and school.
Some schools required the parents to assist the child in school with their
routine, if the child was dependent. Children who improved with therapies
made parents hopeful which facilitated child rearing (17).

He is independent, he can remember routes, he reads the newspaper, he does

horse riding, swimming….
Proud of my son who respects adults which other adolescents don’t do, is
more independent than the normal child, is very organised with his duties.

Parents of children with more cooperative behaviours and fewer tantrums

(13) were more positive about child rearing experiences. Children with
severe behaviour problems posed difficulties for parents in training with
self-help skills and doing follow-up exercises at home.
Physical Appearance of the Child
Few parents (6) of children with Down syndrome reported that they
found their children cute as babies which made them happy (they were
not aware of the typical facial characteristics).
Mohan and Kulkarni 31

Age of the Child

In general, parents of younger children reported feeling more stressed
because of the higher level of dependency due to delayed milestones.
Parents of children in late childhood and adolescence too had their
share of concerns such as tantrums, behaviour problems, sexual arousal
and curiosity. Parents of adult children shared their apprehensions
about the future.
Birth Order of the Child
Parents with an only child had more NA than those with other children
(8). Parents with a first born special child (9) reported more of a struggle
than parents of later born children (10) in overcoming negativity and
coping efficaciously. Those who had an older daughter reported better
coping because of the support and help from her.

Contextual Factors
Social support
Parents who adapted well also had social support. Support came from
different sources: partners, child’s sibling, family members, friends,
therapists and school.
Thematic analysis of narratives documented multiple support systems
in the family: support from partner/husband (13), support from other
immediate family members (12) and support from the other child (13).
Some partners actively contributed to childcare and household chores,
whereas others provided emotional support to the caretaker, and took
care of financial responsibilities. Siblings contributed by sharing in
childcare, household chores and emotionally supporting the parents.
Sometimes grandparents, uncles and aunts proved to be a major source
of support.

Loving husband who supported throughout, even with difficult financial situ-
ations, we could manage, we did it together.
His mother (husband’s) is extremely caring. She takes the child to all possible
activities and events. She participates with enthusiasm. This helped to work
on the family attitude which was negative initially.
I never feel alone, received full support from in-laws and my parents, and
sisters and brothers.
32 Psychology and Developing Societies 30(1)

My family has calmly accepted my son for what he is and has never
complained.
My wife continues to work and I took VRS … we know we could work better
this way as travelling with my daughter for therapies is the need of the hour.

Many parents shared the role of their other child in supporting their
sibling with special needs.

It was like his first word was … (sisters name)… she would tell him why
don’t you jump, she made him do so many things … she taught him things
I would not be able to.
She is my strength … she is with my son and she takes good care of him.
She was just five … she was my best support when the second one was born
… she became my mother… she will say you go off to sleep, I will take care
of her … you need sleep.
I told my daughter (7 yr old), see this girl has not turned … she is 7 months
… my daughter says … don’t worry she will, if not today, tomorrow … my
child gave me positivity.

The school provided structure and a setting for the child to grow and
develop skills. School also provided a context where there were others in
a similar situation, providing an opportunity to meet and relate with
other parents (12).

My child is not toilet trained and the school accepted him without any fuss,
they said we will take care, you don’t worry.

Therapists helped parents understand the child’s diagnosis and gave

them hope about the child’s future. They taught parents strategies for
behaviour management and helped children deal with their developmen-
tal deficits through remedial work (14).

His special educator said—‘how much can you keep feeding, let us try if he
can do it himself … let him spill, we can clear it later, but let him experience
independence’ … and now I can see him eating alone with all jerky move-
ments initially, now smoothly …. I’ve seen development because of her.

Socio-economic Status
Socio-economic status of the parents in this study was determined
using parental education and income. The parent’s income ranged from
Mohan and Kulkarni 33

`3,000 to `70,000 per month. Their educational status ranged from

primary school to a masters degree.
All the parents from lower SES (12) could not comprehend their
child’s diagnosis. Awareness levels were higher in middle-income (8 of
12) and higher-income groups (8). In the lower SES group, parents
who had finished high school as compared to those with primary
schooling were more upset about the child’s condition and less accept-
ing of it. Similar patterns were observed in the middle-income group,
where college-educated parents had higher expectations from the child
and were less accepting than less educated parents. In the upper SES
category, however, most parents were college educated and accepting
of the child’s condition.
Parents from the lower SES were not aware of the facilities available
for special children. Poor access to services, lower social support coupled
with the strain of poverty led to lower levels of self-efficacy among
lower SES parents with regard to childcare.
Many parents from the lower (6 of 12) and middle (7 of 12) SES
reported health problems. In the lower SES, problems ranged from skin
allergies (1), breathing difficulties (3), cancer (2), alopecia (1) to back
ache (3). In the middle-income group, problems reported were back ache
(4), cancer (1), epilepsy (1), paralysis (1) and heart trouble (2). One parent
in the upper SES reported having cancer. Five parents from the middle
and the upper SES respectively had gone to a counsellor to cope with the
strain of child rearing. SES emerged as an important moderator for
coping with higher SES, providing a protective effect and lower SES
compounding stress.

Discussion
The parent’s ability to cope and adapt was analysed through their narra-
tives and the factors influencing the ability to cope are highlighted in the
model. Prior awareness of the condition of mental retardation influenced
how the diagnosis was perceived and accepted which in turn influenced
cognitive adaptation and affect. Child-related characteristics such as
mobility and behaviour problems, the availability of social support
and contextual factors such as family problems all influenced cognitive
adaptation and affect which formed a feedback loop with coping and
self-efficacy. This feedback loop is characterised as resilience. SES was
akin to a moderator variable, where the level of the variable changed the
34 Psychology and Developing Societies 30(1)

value of the variables in the model. Higher SES was related to higher
awareness regarding the condition which influenced their perception of
the child and were more likely to be accepting. High levels of social support
enabled better affect and cognitive adaptation which led to better coping
and self-efficacy. Their financial position also enabled them to provide
for their child’s future. Lower SES led to increased vulnerability to negative
emotions and cognitions (Gallo & Matthews, 2003) and lowered self-
esteem and self-efficacy (Emerson, Graham, & Hatton, 2006).
Lustig (2002) found that families (with a child with intellectual defi-
cit) who could re-frame the disability in a positive way and perceived
themselves as competent, rather than passive, had better family adjust-
ment. Literature documents that realistic acceptance by parents ensures
effective management of and coping with the child’s disability (Nadler,
Lewinstein, & Rahav, 1991; Pinkerton, 1970).
In the following section, the levels of resilient coping observed are
discussed in terms of Richardson’s framework with respect to the levels
of adversity experienced.

Resilient Coping
The situation varied among the parents, with some being relatively advan-
taged in terms of SES or social support or having children with milder
problems than the others. Thus, resilient coping was identified taking into
consideration the level of adversity which included SES, social support and
the severity of the problem. Richardson’s metatheory of resilience (2002)
describes the response to adversity, as an initial reaction of disruption
followed by reintegration at one of four levels, resilient reintegration, rein-
tegration back to homeostasis, reintegration with loss and dysfunctional
reintegration. There were parents at all four levels of Richardson’s model.
Among the resilient, three patterns of resilience were observed which
can be ranked in order of level of adversity. The first group despite high
levels of adversity were at peace and happy, accepted the child and did
their best for them as well as reached out to help others (counselled new
parents at school). This group was characterised by a high level of
insight, which helped them adapt. They actively maintained good cheer,
took care of the whole family and involved the other sibling/s in child-
care, highlighting the role of PA.
A second group was characterised by moderate levels of adversity—
these were mothers who had no awareness about ID. They were not
Mohan and Kulkarni 35

college educated and were from traditional patriarchal families, thus it was
a long journey of self-discovery for the mother, as she understood what the
diagnosis entailed and navigated towards resources for the child. They
gradually became more assertive within the family, were determined and
persevered with their children, and managed to get the family on board.
A third group had lower levels of adversity—composed of higher
SES, college-educated mothers who were able to understand the condi-
tion and access the best doctors, therapists and schools which led to an
attitude of calm acceptance of the situation as well as an effort to help the
child reach his/her potential.
Reintegration back to homeostasis was seen among those where the
level of adversity was high with multiple stressors (children were in poor
physical health, low social support, health problems, low SES); how-
ever, despite the stress, there was an attempt to work towards improving
the child’s condition.
Reintegration with loss was seen among those where the children had
managed to achieve a certain level of independence, yet the parents
seemed discontented. Frustration pervaded their narratives and a feeling
of being burdened was communicated. They had developed health prob-
lems which they attributed to childcare reflecting NA. Disintegration
was seen in a few mothers from the lower SES who faced multiple
stressors and were overwhelmed with the situation.
Different patterns of resilience were observed, with cognitive adapta-
tion, PA and self-efficacy emerging as core elements. Affect emerged as
the single most important element of resilience; despite high levels of
adversity, some parents remained positive towards the situation, towards
the child and towards the future. Emotion regulation emerged as an
effective strategy. Those with insight were able to regulate their emo-
tions and were open to advice from their family who helped them to
regulate their emotions (advising them to be positive). Self-efficacy was
the other element that led to positive outcomes for the child. Self-efficacy
led to being proactive about finding resources and working on therapy
routines at home. Self-efficacy and PA appear independent of each other,
but may co-occur in some people.

Limitations
The study is limited to a small urban sample of parents whose children
were in school. Therefore, one cannot imagine the situation of parents
36 Psychology and Developing Societies 30(1)

in rural areas that are completely lacking in facilities for ID children.

In some schools, certain parents were recommended for the interviews,
and this may have led to a selection bias, as they may have been those
who were successfully coping with the situation.

Conclusion
This work has sampled an understudied population (parents of ID chil-
dren in a developing country context) that grapples with multiple stress-
ors, yet manages to manage. The study has contributed to the resilience
literature by proposing a theoretical model and highlighting the role of
PA. For effective counselling of parents, both context and disposition
should be considered. Narratives of resilient parents can be a resource of
vicarious learning for parents of ID children. PA led to improved relation-
ships and emotional well-being in the family, effective coping with obstacles
and a sense of hope for the future—an ‘upward spiral’ (Fredrickson &
Joiner, 2002). Developing resilience in parents of ID children leads to
well-being all around.

Acknowledgements
The authors sincerely thank the parents who shared their time and experience for the
purpose of this project as well as the schools that kindly allowed access to parents.

Appendix

Parental Coping Responses

Individual Factors
Core
Examples of the Parents’ Responses Axial Codes Categories
I was aware of the diagnosis at the time of birth, Awareness Perception
I knew about the limitations of ID.
I was ignorant about Downs syndrome and the Lack of Perception
doctor never told me about the diagnosis at birth awareness
and even at later visits until I went to another doctor
(because of delayed milestones), when he was nine
months—when I was finally told about Downs
syndrome.
(Appendix Continued)
Mohan and Kulkarni 37

(Appendix Continued)
Core
Examples of the Parents’ Responses Axial Codes Categories
I take my child everywhere, to market, shopping, Able to Parental
functions … sympathy from others at times hurts, accept child in acceptance
knowing how to handle the situation took time ..but society
now I know how.
If child misbehaves, accepting he is not well helps Accepting Parental
me to sail through … acceptance is important. limitations acceptance
My husband said, ‘We will make him independent Acceptance of Parental
by getting him a rickshaw to run if he can’t go to diagnosis acceptance
school and study like others. We will support him.’
Initially, I was reluctant, but later started taking him Able to Parental
to all functions we attended and started responding accept child in acceptance
positively to questions raised by others about his society
conditions.
Whatever was inside, the good things inside came Self­enhancing Cognitive
out after his birth. evaluations adaptation
sab accha hi achha hua hai, uske aane ke baad Reappraisal Cognitive
family mein pyaar badh gaya. adaptation
My child is far better, god is kind to me. Others Framing Cognitive
kids even have physical problems, my child can adaptation
talk, can move.
Growing with … was an experience in itself. Framing Cognitive
I learned perseverance and patience. adaptation
… if you spend your life mourning the fact that you Giving Cognitive
didn’t get a normal child, you may never be free to meaning adaptation
enjoy the very special child you have in hand.
[T]his child bought us closer to god; praying together Giving Cognitive
as a family every morning has become a new ritual meaning adaptation
and that gives us peace.
I was always helpful, so god showed me that I can Giving Cognitive
take care of a special child as well. meaning adaptation
[D]isability in my child is not a punishment for past Giving Cognitive
karmas. It is a blessing for doing good karmas. meaning adaptation
[I]f I imagine my child is not there, I don’t have a Giving Cognitive
thing to do in my life. meaning adaptation
I don’t think why the child is born, I think what Regain Cognitive
I need to do to handle him. mastery over adaptation
the event
(Appendix Continued)
38 Psychology and Developing Societies 30(1)

(Appendix Continued)
Core
Examples of the Parents’ Responses Axial Codes Categories
[T]he relationships have changed after child has Regain Cognitive
come, each one was living for themselves … all mastery over adaptation
focus on her now … a new goal and the family the event
started moving together.
I am not a quitter, Perseverance Self­efficacy
I never want to give up. belief
I will do my best.
[T]he amount of trouble you put in, you will see that Faith in ones’ Self­efficacy
much outcome, and your effort will not go waste. effort belief
You cannot say somebody else will help, you have to Faith in ones’ Self­efficacy
help yourself. effort beliefs
God had thought of it and has given … to me as Faith in self Self­efficacy
I only can bring him up, and in the process I can belief
help others like him as well.
I believe that I can handle him and that I will be Competence Self­efficacy
able to take him towards complete independence and belief
effectiveness
Do not lose hopes. Persistency pays. Hope Positive
affect
Feeling good I could take care of my daughter better Positive
along with supporting other children and parents as affect
a special educator.
I am happy about what I have than to worry about Framing Positive
what I don’t have. affect
… do yoga … don’t let it bother me nor bother Channelising Emotional
others around. emotions regulation
I use to share my fears with my husband, Channelising Emotional
we support each other, now I don’t feel low emotions regulation
I could take care of not only my son better but also as Competence Adaptive
a special educator I support other children and parents. behaviour
I have put in lot of efforts even after my husband’s Perseverance Adaptive
stroke. behaviour
[I]nstead of forcing him to play football, which Analysing Adaptive
all were doing in the school, I know I want to behaviour
channelise his energy, than making him a player,
so I put him in dance class which he enjoys.
(Appendix Continued)
Mohan and Kulkarni 39

(Appendix Continued)

Core
Examples of the Parents’ Responses Axial Codes Categories
[I]t was a difficult decision to relocate to Mumbai, Practical skills Adaptive
especially leaving my husband who just had an behaviour
attack, but I knew its important for my son and my
in-laws are there to take care of my husband.
Source: Verbatim record of parent’s statements who were interviewed as part of
research.

Social Support and Child-related Factors

His mother is extremely caring. She takes the Family Support
child to all possible activities and events. She
participates with enthusiasm; this helped to
work on the family attitude which was negative
initially.
[L]oving husband who supported through even Support from Support
with difficult financial situations we could manage. partner
We did it together.
I never feel alone, received full support from my Family Support
in-laws and my parents, and sisters and brothers.
Good support from friends and neighbours who Society Support
are friendly and converse with him whenever they
meet him. He was always treated normally.
[G]athered strength from other parents/other Professionals/ Support
family members and paediatric neurologist Others
My family has calmly accepted my son for what Family Support
he is and have never complained … support
He is independent in studying. He can remember Able to see Child­related
routes, he reads newspaper, he does horse riding, progress factor
swimming, got award for independence.
Proud of my son who respects adults which other Framing Child­related
adolescents don’t do, is more independent that factor
the child who is normal, is very organised with his
duties assigned.
[C]hild’s 100% dependency on parents for Able to see Child­related
everything decreasing to 50% now, I am happy. progress factor
[N]ow he eats alone, bathes with support and is Able to see Child­related
toilet trained. progress factor
40 Psychology and Developing Societies 30(1)

References
Al-Kuwari, M. G. (2007). Psychological health of mothers caring for mentally
disabled children in Qatar. Neurosciences, 12(4), 312–317.
Baker, B. L., McIntyre, L. L., Blacher, J., Crnic, K., Edelbrock, C., & Low, C.
(2003). Pre-school children with and without developmental delay: Behaviour
problems and parenting stress over time. Journal of Intellectual Disability
Research, 47(4–5), 217–230. doi:10.1046/j.1365–2788.2003.00484.x
Bandura, A. (1977). Self-efficacy: Toward a unifying theory of behavioral
change. Psychological Review, 84(2), 191–215. doi:org/10.1037/0033–295X.
84.2.191
———. (1994). Self efficacy. In V. S. Ramachandran (Ed.), Encyclopedia of
human behaviour (Vol. 4, pp. 71–81). New York, NY: Academic Press.
Bhan, S., Mehta, D., & Chhaproo, Y. (1998). Stress experienced and the coping
methods used by the mothers of children with cerebral palsy. Praachi Journal
of Psycho-Cultural Dimensions, 14(1), 15–19.
Blacher, J., & Hatton, C. (2007). Families in context: Influences on coping and
adaptation. In S. L. Odom, R. H. Horner, M. E. Snell, & J. Blacher (Eds.),
Handbook of developmental disabilities (pp. 531–551). New York, NY:
Guilford Press.
Bonanno, G. A. (2004). Loss, trauma, and human resilience: Have we underes-
timated the human capacity to thrive after extremely aversive events? American
Psychologist, 59(1), 20–28. doi:10.1037/0003–066X.59.1.20
Bronfenbrenner, U. (1979). Contexts of child rearing: Problems and prospects.
American Psychologist, 34(10), 844–850. doi:10.1037/0003–066X.34.10.844
Dalal, A. K., & Pande, N. (1999). Cultural beliefs and family care of the
children with disability. Psychology & Developing Societies, 11(1), 55–75.
doi:10.1177/097133369901100103
De Vos, A. S., Strydom, H., Fouché, C. B., & Delport, C. S. L. (2002). Research
at grass roots: For the social sciences and human services professions.
Pretoria: Van Schaik Publishers.
Emerson, E., Graham, H., & Hatton, C. (2006). The measurement of poverty
and socio-economic position in research involving people with intellectual
disability. International Review of Research in Mental Retardation, 32,
77–108. doi:10.1016/S0074–7750(06)32003–4
Fredrickson, B. L., & Joiner, T. (2002). Positive emotions trigger upward spirals
toward emotional well-being. Psychological Science, 13, 172–175. doi: 10.1111/
1467–9280.00431
Friborg, O., Hjemdal, O., Rosenvinge, J. H., & Martinussen, M. (2003). A new
rating scale for adult resilience: What are the central protective resources
behind healthy adjustment? International Journal of Methods in Psychiatric
Research, 12, 65–76. doi:10.1002/mpr.143
Gallagher, S. K., & Mechanic, D. (1996). Living with the mentally ill: Effects
on the health and functioning of other household members. Social Science &
Medicine, 42(12), 1691–1701. doi:10.1016/0277–9536(95)00296–0
Mohan and Kulkarni 41

Gallo, L. C., & Matthews, K. A. (2003). Understanding the association between

socioeconomic status and physical health: Do negative emotions play a role?
Psychological Bulletin, 129(1), 10–51. doi:10.1037/0033–2909.129.1.10
Gerstein, E. D., Crnic, K. A., Blacher, J., & Baker, B. L. (2009). Resilience and
the course of daily parenting stress in families of young children with
intellectual disabilities. Journal of Intellectual Disability Research, 53(12),
981–997. Retrieved from http://dx.doi.org/10.1111/j.1365–2788.2009.01220.x
Ghai, A. (2000). Towards understanding disability. Psychological Studies, 45(3),
145–149. Retrieved from http://dx.doi.org/10.1111/j.1532–5415.2004.52065.x
Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory:
Strategies for qualitative research. Chicago, IL: Aldine.
Johnston, C., Hessl, D., Blasey, C., Eliez, S., Erba, H., Dyer-Friedman, J., &
Reiss, A. L. (2003). Factors associated with parenting stress in mothers of
children with fragile X syndrome. Journal of Developmental & Behavioral
Pediatrics, 24(4), 267–275. Retrieved from http://dx.doi.org/10.1097/0000
4703–200308000–00008
Kakar, S. (2012). The inner world: A psychoanalytic study of childhood and
society in India. New Delhi: Oxford University Press.
Klohnen, E. C., Vandewater, E. A., & Young, A. (1996). Negotiating the
middle years: Ego-resiliency and successful midlife adjustment in women.
Psychology and Aging, 11(3), 431–442. doi:10.1037/0882–7974.11.3.431
Lachman, M. E., & Weaver, S. L. (1998). Sociodemographic variations in the
sense of control by domain: Findings from the MacArthur studies of midlife.
Psychology and Aging, 13(4), 553–562. doi:10.1037/0882–7974.13.4.553
Lustig, D. C. (2002). Family coping in families with a child with a disability.
Education and Training in Mental Retardation and Developmental Disabilities,
37(1), 14–22. Retrieved from http://www.jstor.org/stable/23879579
Luthar, S. S. (2006). Resilience in development: A synthesis of research
across five decades. In D. Cicchetti & D. J. Cohen (Eds.), Developmental
psychopathology: Risk, disorder, and adaptation. New York, NY: Wiley.
Luthar, S. S., & Cicchetti, D. (2000). The construct of resilience: Implications
for interventions and social policies. Development and Psychopathology,
12(4), 857–885. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/
PMC1903337/pdf/nihms21560.pdf
Luthar, S. S., Cicchetti, D., & Becker, B. (2000). The construct of resilience:
A critical evaluation and guidelines for future work. Child Development,
71(3), 543–562. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/
PMC1885202/pdf/nihms-21559.pdf
Mangala, C., & Ghai, A. (2000). Understanding motherhood in the context of
a developmentally disabled girl child (Unpublished undergraduate dissertation).
Jesus and Mary College (University of Delhi), Delhi.
Masten, A. S. (2007). Resilience in developing systems: Progress and promise as
the fourth wave rises. Development and Psychopathology, 19(3), 921–930.
doi:10.1017/S0954579407000442
42 Psychology and Developing Societies 30(1)

Masten, A. S., & Obradovic, J. (2008). Disaster preparation and recovery: Lessons
from research on resilience in human development. Ecology and Society,
13(1), 9. Retrieved from http://www.ecologyandsociety.org/vol13/iss1/art9/
Middleton, L. (1995). Making a difference: Social work with disabled children.
Birmingham: Venture Press.
Mink, I. T., Nihira, K., & Meyers, C. E. (1983). Taxonomy of family life styles:
I. Homes with TMR children. American Journal of Mental Deficiency, 87(5),
484–497.
Mullins, J. B. (1987). Authentic voices from parents of exceptional children.
Family Relations, 30–33. Retrieved from http://www.jstor.org/stable/584643
Nadler, A., Lewinstein, E., & Rahav, G. (1991). Acceptance of mental retardation
and help-seeking by mothers and fathers of children with mental retardation.
Mental Retardation, 29(1), 17–23. Retrieved from http://search.proquest.com/
openview/a671cf1ace2c70c418f655fdb9e1c90d/1?pq-origsite=gscholar
Navalkar, P. G. (2007). A descriptive study of father role perception and
involvement in parenting a child with disability (Unpublished doctoral
dissertation). Tata Institute of Social Sciences, Mumbai.
Olsson, M. B., & Hwang, C. P. (2008). Socioeconomic and psychological
variables as risk and protective factors for parental well-being in families
of children with intellectual disabilities. Journal of Intellectual Disability
Research, 52(12), 1102–1113. doi:10.1111/j.1365–2788.2008.01081.x
Pinkerton, P. (1970). Parental acceptance of the handicapped child. Developmental
Medicine & Child Neurology, 12(2), 207–212. doi:10.1111/j.1469–8749.1970.
tb01891.x
Richardson, G. E. (2002). The metatheory of resilience and resiliency. Journal of
Clinical Psychology, 58(3), 307–332. doi:10.1002/jclp.10020
Seltzer, M. M., Greenberg, J. S., Flovd, F. I., Pettee, Y., & Hong, J. (2001). Life
course impacts of parenting a child with a disability. American Journal on
Mental Retardation, 106(3), 265–286. doi:10.1352/0895-8017(2001)106<0265:
LCIOPA>2.0.CO;2
Singer, G. H. S., & Floyd, F. (2006). Meta-analysis of comparative studies
of depression in mothers of children with and without developmental
disabilities. American Journal on Mental Retardation, 111(3), 155–169.
doi:10.1352/0895–8017(2006)111[155:MOCSOD]2.0.CO;2
Skinner, D. G., Correa, V., Skinner, M., & Bailey, D. B., Jr. (2001). Role of
religion in the lives of Latino families of young children with developmental
delays. American Journal on Mental Retardation, 106(4), 297–313.
Sloper, P., & Turner, S. (1993). Risk and resistance factors in the adaptation
of parents of children with severe physical disability. Journal of Child
Psychology and Psychiatry, 34(2), 167–188. doi:10.1111/j.1469–7610.1993.
tb00978.x
Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and
procedures for developing grounded theory (2nd ed.). Thousand Oaks, CA:
SAGE Publications.
Mohan and Kulkarni 43

Taanila, A., Syrjälä, L., Kokkonen, J., & Järvelin, M. R. (2002). Coping of parents
with physically and/or intellectually disabled children. Child: Care, Health
and Development, 28(1), 73–86. doi:10.1046/j.1365–2214.2002.00244.x
Ungar, M. (2003). Qualitative contributions to resilience research. Qualitative
Social Work, 2(1), 85–102.
———. (2004). A constructionist discourse on resilience: Multiple contexts,
multiple realities among at-risk children and youth. Youth and Society, 35(3),
341–366. doi:10.1177/1473325003002001123
———. (2008). Resilience across cultures. British Journal of Social Work,
38(2), 218–235. doi:10.1093/bjsw/bcl343
Upadhyay, G. R., & Havalappanavar, N. B. (2007). Stress among single parent
families of mentally retarded children. Journal of the Indian Academy of
Applied Psychology, 33(1), 47–51. Retrieved from http://medind.nic.in/jak/
t07/i1/jakt07i1p47.pdf
Werner, E. E. (1995). Resilience in development. Current Directions in Psycho-
logical Science, 4(3), 81–85. Retrieved from http://www.jstor.org/stable/
20182335

Authors’ Bio-sketch

Radhikha Mohan is currently working as an Assistant Professor

(Department of Psychology) in Vivekanand College of Arts, Science &
Commerce, Mumbai. She has been awarded PhD in Psychology from
IIT Bombay, Mumbai. She received the award ALEXIS which is given
for the extensive services in the field of mental health services and
also received the award as the best trainer from the Department of
Education for training teachers with life skills education. Her areas of
interest are resilience, life skills education, school counselling and handling
children with special needs.

Mrinmoyi Kulkarni is an Associate Professor in the Department of

Humanities and Social Sciences at the IIT Bombay, Mumbai. Her research
interests are in the area of health behavior, nutrition and psychology
applied to development.