Parenting A Child With Down Syndrome in Karachi Pakistan - Mother

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SSLA Culminating Experience Undergraduate Research Projects
Spring 2023
Parenting a child with Down Syndrome in Karachi, Pakistan:

Mothers’ experiences of stress and social support
Wajeeha Rizwan
w.rizwan_19147@khi.iba.edu.pk
Follow this and additional works at: https://ir.iba.edu.pk/sslace
Recommended Citation
Rizwan, W. (2023). Parenting a child with Down Syndrome in Karachi, Pakistan: Mothers’ experiences of
stress and social support (Unpublished undergraduate project). Institute of Business Administration,
Pakistan. Retrieved from https://ir.iba.edu.pk/sslace/203
This document is brought to you by iRepository. For more information, please contact irepository@iba.edu.pk.
https://ir.iba.edu.pk/sslace/203
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Parenting a Child with Down Syndrome in Karachi, Pakistan: Mothers’ Experiences of Stress
and Social Support
by
Wajeeha Rizwan
Culminating Experience Research Project
submitted to the Department of Social Sciences and Liberal Arts
in partial fulfilment of the requirement for the Degree of Bachelor of Science
Social Sciences and Liberal Arts
Completed under the supervision of Dr. Ayesha Zia
Institute of Business Administration
Karachi, Pakistan
8 June 2023
Published by iRepository, 2023

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TABLE OF CONTENTS
Parenting a Child with Down Syndrome in Karachi, Pakistan: Mothers’ Experiences of

Stress and Social Support........................................................................................................ 1
Acknowledgements .................................................................................................................. 4
Abstract..................................................................................................................................... 5
Chapter 1 .................................................................................................................................. 6
Parenting a Child with Down Syndrome in Karachi, Pakistan: Experiences of Stress
and Social Support ................................................................................................................... 6
Chapter 2 ................................................................................................................................ 10
Literature Review .................................................................................................................. 10
Social Support ................................................................................................................................... 10
Local Laws .................................................................................................................................... 10
Familial and Community Social Support ...................................................................................... 14
Healthcare ..................................................................................................................................... 15
Theoretical/Conceptual Frameworks ................................................................................................ 16
Caregiver Burden and Stress, Moderated by Gender .................................................................... 16
Stigma ........................................................................................................................................... 18
Rationale and Conclusion ................................................................................................................. 19
Chapter 3 ................................................................................................................................ 22
Method .................................................................................................................................... 22
Study Design ..................................................................................................................................... 22
Participants........................................................................................................................................ 22
Sampling ........................................................................................................................................... 23
Procedure .......................................................................................................................................... 24
Data Analysis .................................................................................................................................... 25
Ethical Considerations ...................................................................................................................... 26
Chapter 4 ................................................................................................................................ 28
Results and Discussion........................................................................................................... 28
Medical Treatment ............................................................................................................................ 28
Aspects of Social Support ................................................................................................................. 34
The Schooling Experience ................................................................................................................ 41
Experience of Stress .......................................................................................................................... 43
Conclusion ........................................................................................................................................ 47
Implications and Recommendations ................................................................................................. 48

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Limitations and Avenues for Further Research ................................................................................ 50

References ............................................................................................................................... 52

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Acknowledgements
In the completion of this paper, I would first like to thank God Almighty. I would then
like to express my gratitude to Dr. Ayesha Zia for being my main source of guidance and
constant support – I am so grateful you were my supervisor. Thank you for believing in me
and making this process so smooth and enjoyable for me. I would like to endlessly thank my
parents and my sisters, Maleeha and Maryam for being my pillars, my sources of strength and
encouragement; without you four, I can do nothing. Next, I thank my many friends for their
constant support – you all have kept me going throughout this project.
I also want to lend my unending gratitude to KDSP, for trusting me enough and
allowing me to conduct this passion project with them. I am also so very grateful to all the
mothers who so graciously helped me with my research, even though talking about it was so
difficult.
I would also like to extend my thanks to Dr. Aliya Iqbal Naqvi, our CE Instructor, for
bringing our ideas to life, and to my batch, for helping me shape and churn it into something
extraordinary. I am also very grateful to Miss Zenab Tariq, for agreeing to be my second
reader and providing such thorough and valuable feedback.
Lastly, I would like to thank the little joys in life: fruits, my mother’s homemade food,
my dad’s constant trips to the market for snacks, and music for helping me get through this
labour of love.

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Abstract
Research has shown the effect of caregiving burden and stress on parents of children with
intellectual and developmental disabilities, and how this experience of parenting can be
influenced by the external social support received from familial and non-familial sources.
This paper hence aims to explore the experiences of mothers of children with Down
Syndrome in Karachi, Pakistan, with the research questions lending focus on the supportive
and non-supportive factors that influence the experience of social support received from
familial and non-familial sources, the subjective experience of stress in mothers’ lives and its
impact on their physical health, and recommendations of parents and field experts in
improving quality and quantity of social support for these families. Semi-structured, in-depth
interviews were conducted with 8 mothers of children with Down Syndrome. Thematic
analysis was conducted on the data collected to generate relevant themes. Results showed that
mothers experienced negligent and poor treatment from schools, healthcare providers, and
extended relatives, stemming from stigma and lack of awareness surrounding Down
Syndrome, and a neglectful attitude from their husbands. They relied mostly on welfare
organizations for social support, reportedly receiving no governmental assistance. Lastly,
mothers experienced high levels of caregiver burden and stress and lack of self-care, which
affected their physical health. An expert interview was also conducted with a field expert to
curate a set of recommendations, which included governmental provision of concessions in
schooling and healthcare, proper implementation of disability law, and increased awareness
campaigns.
Keywords: Down Syndrome, parenting, social support, stress, stigma, mothers

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Chapter 1
Parenting a Child with Down Syndrome in Karachi, Pakistan: Experiences of Stress
and Social Support
Parenting children with intellectual and developmental disabilities has been a topic of
interest for many scholars in psychology. Down Syndrome is one such developmental
disability that has been studied in literature. Down Syndrome is a chromosomal condition
which is associated with intellectual disability and affects approximately 1 out of every 800
births in the world (Bull, 2020). Phenotypic variations amongst individuals with Down
Syndrome is very common and intellectual disability, though most commonly occurring
moderately, ranges from mild to severe (Bull, 2020).
Individuals with Down Syndrome are more likely to suffer from several medical
issues such as pulmonary artery hypertension, respiratory disorders, hearing impairments,
obesity, and intellectual disability (Bull, 2020; Moreau, 2021). They are also at risk for
language difficulties. Though progress has been made, individuals with Down Syndrome also
face difficulties in adapting and integrating to society (Antonarakis et al., 2020); mothers
reported that their children often had difficulty in adjusting to the school environment and
mingling with other children (AlShatti et al., 2021).
Pakistan has little availability of recent statistics on the prevalence of Down
Syndrome in the country. A study conducted in Lahore in 2005 revealed that 1 in 300
children were born with Down Syndrome, from a small cohort of 1,476 children born from
March 1984 to July 1986 (Gustavson, 2005). Pakistan also does not have a national screening
programme for Down Syndrome; screening is only available through private clinics and
hospitals, which makes it inaccessible for most of the population; therefore, most babies born
with Down Syndrome are only diagnosed postnatally (Ahmed et al., 2013). A study

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conducted in 2005 found that 0.2% of patients delivered babies with Down Syndrome in
Karachi, Pakistan (Rahman & Obaid-ur-Rahman, 2005).
Research conducted on parenting of children with Down Syndrome and other
developmental disabilities has shown that parents experience the heavy financial burden of
medical and schooling fees, heavy emotional burden due to lack of support and understanding
from family and community, and distress due to lack of social and financial supports put in
place (Ali Nathwani et al., 2018; Rahimi & Khazir, 2019). Parents also report experiencing
rejection and ostracisation from family and wider community due to stigma attached to
disability (Ahmed et al., 2013; Rahimi & Khazir, 2019, Suza et al., 2020).
Stress and parental stress are variables that are especially significant to this study.
Stress, according to the APA dictionary, refers to ‘the physiological or psychological
response to internal or external stressors,’ and is often accompanied by physiological bodily
responses such as palpitations, sweating, shortness of breath and so on (APA Dictionary of
Psychology, n.d.). Parental stress is stress that is accompanied by several negative outcomes
including parent depression, high marital conflict, worsening physical health, and poor child
behaviour (Neece et al., 2012). Challenges resulting from parenting a child with Down
Syndrome, considering factors such as socio-economic background, lack of social support,
and financial situation, may lead to high parental stress in parents.
The experience of caregiving burden, i.e., negative outcomes such as multifaceted
strain resulting from caring for or looking after a loved one over time (Liu et al., 2020) can
also be connected to the experience of parents in caring for children with Down Syndrome.
The experience of ostracization and stigma will also be explored in this study as parents of
children with disabilities in previous literature have also reported the experience of stigma
(Ahmed et al., 2013; Rahimi & Khazir, 2019, Suza et al., 2020), defined by the APA
Dictionary of Psychology as ‘the negative social attitude attached to a characteristic of an

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individual that may be regarded as a mental, physical, or social deficiency. A stigma implies
social disapproval and can lead unfairly to discrimination against and exclusion of the
individual.’ (APA Dictionary of Psychology, n.d.).
Negative outcomes such as parental stress and caregiving burden can be mitigated
through social support – defined as the understanding and feeling of having someone to turn
to for empathy, emotional support, empathy, assistance with daily tasks, etc (Alon, 2019).
Several studies have stated the positive impact of social support in the lives of parents of
children with Down Syndrome (Yildirim & Yildirim, 2010), citing that firstly, mothers with
children who have Down Syndrome are more likely to have greater access to syndrome-
specific support groups compared to mothers of children who have other developmental or
intellectual disabilities, and secondly, these support groups can provide families with
valuable knowledge about the Down Syndrome experience, which can lead to ‘more adaptive
coping’ (Esbensen & Seltzer, 2011, p. 4).
Social support in the form of social work and rehabilitation and training centres can
also serve as a protective factor for families with Down Syndrome. These centres can have
positive impact on families in the provision of early intervention services, physical or
intellectual training, emotional support, information services, counselling, and connecting
with other families (Khan et al., 2020; Semigina & Chystiakova, 2020). Family support
through these social support services and organizations enhances their quality of life (QOL) –
resulting in better inclusion and immersion with mainstream society, enabling individuals
with disabilities to become productive individuals (Wang & Brown, 2009). Family support
policies and practices are most effective when affected communities are involved in the
decision-making process regarding allocation of resources (Wang & Brown, 2009).
There is a lack of formal public social support systems set in place for families with
individuals with disabilities in Karachi, Pakistan. However, in this vacuum, there are a few

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notable non-profit organizations that have started operations. One such that is relevant to this
study is Karachi Down Syndrome Program (KDSP), which was formed in 2014 by a group of
parents and individuals for the inclusion and acceptance of individuals with Down Syndrome
in Karachi (What is KDSP?, n.d.). Their support extends to six areas: family support,
awareness, healthcare, skills development, education, and early childhood intervention (What
is KDSP?, n.d.). The sample for the current study was collected from KDSP.
There is limited research conducted in the context of Karachi, Pakistan regarding
parenting experiences of parents of children with Down Syndrome (Ahmed et al., 2013, Ali
Nathwani et al., 2021) specific to stress and social support and no study that explores
recommendations for social support curated from field experts’ and parents’ own suggestions.
This paper therefore sets out to explore the psychological and physiological
experiences of stress of mothers of children with Down Syndrome in Karachi, Pakistan. It
will also explore facets of social support that influence the experience of parenting, which
include both supportive and non-supportive factors, with a specific focus on social support by
family, community, non-governmental welfare organizations, healthcare and education
systems, and governmental organizations. This was done through in-depth interviews with 8
mothers of children with Down Syndrome residing in Karachi, Pakistan. One interview with
a field expert, involved in a non-governmental welfare organisation called Karachi Down
Syndrome Program (KDSP) was also conducted. Thematic analysis was conducted on the
transcriptions of the interviews. A set of recommendations were curated after interviews with
mothers and the field expert for the improvement to improve social support provided by
family, community, NGOs, healthcare providers, and the government.

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Chapter 2
Literature Review
Previous research on the subject matter of caregiver burden, stress, social support, and
stigma are heavily grounded in their social contexts. Factors such as gender, religion, and
infrastructures of social support put in place by governmental and non-governmental bodies
are significant to the experience of parenting of children with Down Syndrome.
Social Support
Local Laws
There are several laws that have been passed for the rights of people with disabilities
in Pakistan, however, they must be analysed through a critical lens.
The Disabled Persons’ (Employment and Rehabilitation) Ordinance, passed in 1981,
detailed extensively the rights of disabled people in Pakistan for their ‘employment,
rehabilitation, and welfare’. It defines disabled persons as follows:
"Disabled person" means a person who, on account of injury, disease, or congenital
deformity, is handicapped for undertaking any gainful profession or employment in
order to earn his livelihood, and includes a person who is blind, deaf, physically
handicapped or mentally retarded (The Disabled Persons’ (Employment and
Rehabilitation) Ordinance, 1981, p. 1).
There is consistent use of the words ‘deformity’ and ‘mentally retarded’ which are considered
a slur due to their negative connotations. It details the establishment of Councils and the
establishment of training centres by Provincial Councils. It also states the establishment of a
Fund by the Federal Government, used for the establishment of training centres, to provide
financial assistance to disabled persons, to disburse stipends or scholarships for people with

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disabilities for training, for their welfare, and for the provision of surgical or medical
treatment.
The 1998 census provided data about disability under the categories of ‘crippled,
insane, mentally retarded, multiple disability, blind, deaf, mute, and others’, and stated that
persons with disabilities constituted 2.49% of Pakistan’s population (Ahmed et al., 2011). It
is important to note that this percentage, though the most recent, is outdated by 25 years.
Furthermore, the National Policy for Persons with Disabilities, passed in 2002,
involved multiple stakeholders, NGOs, and federal ministries including those of Health,
Housing, Labour for the purpose of the realisation of the full potential of people with
disabilities in all areas of life (Ahmed et al., 2011). It called for the inclusion of persons with
disabilities in the planning and implementation of educational, training, and rehabilitation
programmes, and advocated for the need for inclusive education (National Policy for Persons
with Disabilities, 2002).
Later, the province of Sindh enacted their own law, i.e., ‘The Sindh Differently Able
Persons (Employment, Rehabilitation, and Welfare) Act, 2014. This corrected some glaring
problems with the 1981 ordinance, including changing the words mentally retarded to
mentally challenged, and disabled persons to differently abled persons. This Act detailed the
Establishment of a Council, responsible to collect information on and provide rehabilitation
and training to people with disabilities. It detailed the full concession of admission fee and
relief of up to 75% of tuition fee in government schools and universities, reserved seats for
children with disabilities at every stage of schooling, and health insurance and free treatment
in government hospitals and dispensaries.
In addition, The Disabled Persons (Employment and Rehabilitation) (Amendment)
Act, 2015 details the issuance of Special Computerized National Identity Cards (SCNIC) to

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individuals with disabilities, carrying with it benefits of railway and air ticket charge
concessions and a 30% discount on utility store purchases (The Disabled Persons…, 2015).
The major issue in providing government-assisted rehabilitation and training to people
with disabilities is the lack of updated data available on the magnitude of disabilities in
Pakistan. When there is a lack of appropriate needs assessment, policies cannot be
comprehensively planned or implemented. For example, without the data available on the
number of people requiring medical assistance, how will an appropriate amount of the Fund
be allocated and disbursed?
Moreover, Ahmed et al. (2011) state that the Disabled Persons (Employment and
Rehabilitation) Ordinance 1981 has several lacunae that restricts its effectiveness as a
mechanism for the employment or rehabilitation of people with disabilities. For example,
seats that were reserved for people with disabilities in government departments are still
empty due to lack of awareness and proper implementation of the 1981 ordinance (Ahmed et
al., 2011).
Though there has been effort made to use sensitive language in the recent acts passed,
they still do not address several other gaps. There is a lack of a system to encourage
awareness and acceptance about people with disabilities in the wider society. For example,
there are little to no formal systems available for counselling available to parents outside or
private healthcare. As prenatal testing for disabilities such as Down Syndrome are only
available privately, in a few large cities or through NGOs (Jafri et al., 2015), most of the
population receive diagnosis of birth disorders postnatally (Ahmed et al., 2013) - and if not
guided appropriately by doctors, are unable to provide early intervention to their children for
improvement. There is also a need for genetic counselling to ensure that parents know the
risk factors involved with traditions such as marrying within families.

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In addition, parents of children with Down Syndrome have often reported the
experience of social ostracization (Ahmed et al., 2013; Rahimi & Khazir, 2019, Suza et al.,
2020). To increase awareness of such disabilities to ensure inclusive mainstreaming of such
individuals into all aspects of society, campaigns must be run. Schools must be made
inclusive, print and electronic media must represent people with disabilities and debunk
myths, and education must be provided by NGOs and educational institutions to improve
sensitivity. The law and public policy barely address these factors – and even if they do,
research shows that there is a complete lack of implementation.
The law details that there must be seats reserved for children with disabilities at every
level of education and there is fee concession for admission and tuition in government
schools, but other than issues with implementation, there is another glaring problem: are the
teachers at government schools trained to teach an inclusive classroom? Are the schools
provided with the resources required by children with disabilities, such as braille boards?
There is also a need for people with disabilities to be involved in the planning and
implementation of rehabilitation programs and policies, as stated by the National Policy for
Disabled Persons in 2002. The main issue is that most needs such as awareness campaigns,
establishment of training and rehabilitation centres, and inclusion of people with disabilities
in policymaking and implementation have all been laid down in the law but they are not
being implemented - leading to lack of proper social support infrastructure for people with
disabilities. There is a need for strict implementation of law.
There is also a large gap in literature which researches the (lack of) implementation of
such laws in Pakistan, which leads to the problems of people with disabilities flying under the
radar. Hence, they remain unaddressed, and laws remain ratified on paper only. On-ground
research needs to be conducted on whether families with disabilities are receiving support
from official bodies that has been ratified into law.

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Familial and Community Social Support
Research has shown that social support from family, friends, and community
moderates negative outcomes resulting from parenting of a child with disability. Social
support refers to the experience of feeling that one is valued and cared for in their social
network and is beneficial to one’s physical and mental health (Taylor, 2011). Social support
could be financial, or in regard to childcare, emotional support, or physical support, etc. The
experience of social support has been shown to have a buffering effect in mitigating negative
outcomes from a stressful event (Cohen & Wills, 1985).
A study conducted by Park and Lee in South Korea in 2022 on the moderating effect
of social support on parental stress and depression in mothers of children with disabilities
yielded results that showed that even though mothers experiencing parental stress were also
more likely to have depressive symptoms, those who perceived high social support from
family, friends, and social networks were less likely to experience depression.
A study conducted in Kerala, India in 2021 analysed social support available for
parents of children with intellectual disability, and results showed that parents depended more
on sources of informal social support, i.e., from family, friends, and wider community,
compared to formal social support structures i.e., from healthcare professionals or educational
specialists (Rushda & Daisy, 2021). The experience of perceived informal social support
reduced their self-reported stress (Rushda & Daisy, 2021).
Research conducted on the role of social support for African American parents in
parenting a child with a disability showed that the negative outcomes of parenting a child
with disability, e.g., stress, can be mitigated if parents receive greater positive support from
family (Ha et al., 2018). This study had another interesting finding: that negative social

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interactions with family led was detrimental for mental health but did not lead to an
exacerbation of stress in parents in caring for a child with disability (Ha et al., 2018).
There is also a gendered element in the aspect of social support. Ishida et al. (2022)
conducted research into this gendered element of social support in parenting a child with a
developmental disorder, and results showed that fathers’ avenues of social support were
limited mostly to their spouse and biological mother, along with workplace colleagues to a
lesser extent in caring for their child. On the other hand, mothers were more likely to receive
support from non-familial sources such as education specialists and welfare organisations,
along with their spouse and biological mother (Ishida, 2022). Therefore, there is a difference
in the elements of social support as received by mothers and fathers.
In the context of Karachi, Pakistan, there is a gap in literature addressing how parents
of children with disabilities rely on social support: which sources they depend on more,
whether gender influences who parents rely on for support, and how these sources of support
improve their parenting experience, including their experience of stress.
Healthcare
Social support also involves the aspect of the experience of healthcare and the
attitudes of doctors towards their patients. A study conducted in England on the healthcare
experiences of patients with intellectual disability and their carers showed that healthcare
staff often did not accommodate the needs of the patients in communication e.g., by ignoring
the questions of the patients over the carer, using medical jargon, giving incomplete
information, or speaking too quickly (Ali et al., 2013). The patients often had trouble
receiving timely support, experienced provision of substandard care from healthcare
professionals, and experienced discrimination and poor treatment due to lack of awareness on
the staff’s part and so on (Ali et al., 2013).

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Another study conducted in Ecuador showed that health professionals rarely
communicated the Down Syndrome diagnosis in a sensitive and appropriate manner, as they
were arrogant, insensitive, used guilt, threats, or did not provide enough information due to
themselves feeling uncomfortable as they were not trained to deal with such situations
(Huiracocha et al., 2017).
This highlights the need for training and sensitivity on the part of healthcare
professionals in providing a diagnosis of Down Syndrome to alleviate the stress of parents
and provide them appropriate information to access support and assistance. There is an
apparent lack of research on this aspect of social support in the context of Pakistan - how
healthcare professionals deliver the diagnosis and how this affects the framing of the
diagnosis for the parents.
Theoretical/Conceptual Frameworks
Previous literature on the topic of parenting children with disabilities reveals certain
theoretical frameworks that can be used to analyse this experience.
Caregiver Burden and Stress, Moderated by Gender
Providing care to a family member and the associated physical and mental stress
involved for the caregiver is called the caregiver burden (Faison et al., 1999). Caregivers are
often called ‘invisible patients’ as they are also suffering severe physical and mental stress
while caregiving, yet their health is overlooked by family, friends, and health physicians
(Peck, n.d.). Caregiving involves assistance with basic everyday activities such as eating,
washroom visits, administering medication, scheduling appointments to doctors and
physicians, and providing emotional care and support to the ill or disabled family member
(Adelman et al., 2014). Therefore, the caregiver must expend physical, mental, emotional,

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and financial efforts in caregiving, at an expense to themselves. Caregivers also may have
other responsibilities such as housework, childcare, financial responsibilities, a job, and so
on.
Research conducted by McManus et al. (2011) showed that families of children with
developmental disabilities tended to experience caregiver burden - this was related to the
increased time spent in taking care of their child’s health and resulting financial and
occupational constraints. Families with unmet healthcare needs experienced caregiver burden
more severely (McManus et al., 2011). Moreover, poor and minority families (and those
without health insurance) were more likely to experience caregiver burden due to difficulty in
navigating and obtaining appropriate healthcare (McManus et al., 2021).
There is also a gendered aspect to caregiving. A study reported that mothers report
higher caregiving burden compared to fathers (Roper et al., 2014). An interesting finding of
this study was that more positive sibling relationships were reported in families of children
with Down Syndrome compared to families with typically developing children, and caregiver
burden had a negative relationship with parents’ perceptions of sibling relationships (Roper et
al., 2014).
The concept of caregiving burden is important in this research as there is a gap in
literature regarding caregiving burden of parents of children with Down Syndrome, and how
this is moderated by sibling relationships, gender, access to healthcare, and other factors in
Karachi’s context.
The concept of stress, specifically parental stress is not unrelated to the experience of
caregiver burden. Caregiver burden is an umbrella term for several negative outcomes that
can result from caregiving, stress, on the other hand, is one of these potential outcomes.
Stress is also explored more widely in literature relating to parenting of children with Down
Syndrome and other developmental disabilities.

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A study exploring the experiences of mothers of children with Down Syndrome in
Indonesia showed that mothers reported stress due to several factors: worrying about the
future of their child, difficulty in acceptance of initial diagnosis due to lack of awareness, in
experiencing challenges and obstacles for caring for their children, feeling ostracised from
the wider community, and feeling fatigue and other physiological symptoms (Suza et al.,
2020).
The experience of caregiver burden, which may include stress, can have negative
psychological and physiological outcomes for parents of children with disabilities, also
affecting the care they provide. There is a need to identify causes of stressors and risk factors
to minimise this negative experience for parents and their children in the context of Karachi,
Pakistan.
Stigma
The experience of stigma and social ostracization is one that is commonly reported by
parents of children with intellectual and developmental disabilities. Results of a study
conducted in Vietnam on stigma experienced by families of children with intellectual
disabilities showed that caregivers reported higher levels of social exclusion and experienced
more restrictions on their social life arising as people perceived the disability of their
child(ren) as threatening of core cultural norms which led to labelling and social exclusion
(Ngo et al., 2012).
Other studies also explore how parents of children with disabilities report
experiencing rejection and ostracization from family and wider community due to stigma
attached to disability (Ahmed et al., 2013; Rahimi & Khazir, 2019, Suza et al., 2020).
Minority and migrant families experience additional penalties. A study conducted in
Hong Kong revealed that migrant parents of children with special needs experienced

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stigmatisation that included microaggressions, lack of awareness and education, and
discrimination (Kwok & Kwok Lai Yuk Ching, 2022). Some parents, on the other hand, had
social support and used religion as a framework, which improved their experience (Kwok &
Kwok Lai Yuk Ching, 2022). Karachi is the largest city of Pakistan and has people from all
social, religious, cultural, and socio-economic backgrounds, therefore there is a need to
research on how stigma around disabilities affects life experiences of families with children
with disabilities, and how this is moderated by different sociodemographic factors.
Rationale and Conclusion
The experiences of mothers of children with Down Syndrome have not been explored
in the context of Karachi, an urban centre teeming with people of different religious, cultural,
and socio-economic backgrounds. People with disabilities and their families are a vulnerable
population. Research shows that there is a gap in literature which addresses the experiences
of social support of parents of children with Down Syndrome, in the context of how they
experience healthcare and schooling in Pakistan’s context. The experience is moderated by
supportive and non-supportive social factors, e.g., social support (or the lack thereof)
received from family, friends, community, welfare organisations, and official government
bodies. Social support is an important aspect that can act as a buffer to stress experienced by
parents in caring for their child or children with disabilities, hence, there is a need to conduct
on-ground research on these experiences to identify problems and propose recommendations,
which are context-based and specific to people’s experiences.
Therefore, this research aims to firstly explore the experiences of mothers of children
with Down Syndrome in Karachi, Pakistan. It will primarily investigate the sources of social
support available to these parents, and how they influence the experience of parenting. This
will include social support received from both familial sources (immediate family and

20
extended relatives) and non-familial sources (friends, community, welfare organisations,
schools, healthcare, and official government bodies). The research will further explore
parental stress as reported by the mothers, its physiological impacts, and their self-care habits
in their daily routines. These two research questions will be explored through in-depth
interviews with parents of children with Down Syndrome. Lastly, this paper will explore
recommendations to improve structures of social support, curated through recommendations
from parents and field experts working with people with disabilities.

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Research Questions
This research will primarily explore three research questions through in depth, semi-
structured interviews:
1. What are the supportive and non-supportive factors that influence the experience of
social support received, from both familial and non-familial sources?
2. What is the subjective experience of stress reported by mothers in the everyday lives
of parents of children with Down Syndrome and how does it impact their physical
health?
3. What recommendations do parents and field experts suggest to improve social support
provided by family, community, NGOs, healthcare providers, and the government?

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Chapter 3
Method
Study Design
Qualitative methods were used for this research as qualitative methods provide a more
complete understanding of the subject matter with all its nuances and rich descriptions
(Cramer & Howitt, 2020). Moreover, as parenting is a complex process, qualitative methods
are better to document experiences with parenting as human experiences and interactions are
too complex and varied to be boiled down to a few variables or numbers (Cramer & Howitt,
2020). Out of the five qualitative approaches (narrative, phenomenological, grounded theory,
case study, and ethnography) the phenomenological approach to qualitative inquiry was
chosen as it explores the collective experience of a certain phenomenon (Creswell, 2013).
Therefore, one-on-one in-depth, semi-structured interviews were conducted with participants
of the study to acquire rich, nuanced data about experiences of mothers of children with
Down Syndrome.
Participants
All participants are mothers of children with Down Syndrome. Their children are of
an age of 18 or below and have been obtaining services from KDSP for at least a year.
Initially, it was planned that both parents will be interviewed, however, due to limitations
arising from lack of accessibility to fathers, it was then decided to only focus on mothers.
Participants were all permanent residents of Karachi, Pakistan for the past at least 3
years. This choice was made so that the mothers were able to provide information of
parenting experience as based in Karachi, an urban centre. Participants were excluded if they
did not fit this criterion as it is possible that their parenting experiences will differ in urban

23
areas compared to semi-urban or rural areas outside of Karachi. All 8 participants were coded
as P1, P2, and so on. Table 1 illustrates the participants’ demographics.
Table 1
Sociodemographic Characteristics of the Participants
Participants Age No. of Demographi Employment No. of

Children cs of Child Earners in
with Down Household
Syndrome:
P1 55 3 14M No 1
P2 35 3 13F Yes 2
P3 38 3 11M No 1
P4 47 1 16F No 0
P5 45 3 13M No 1
P6 38 2 13F No 1
P7 37 3 9M No 1
P8 50 2 14F Yes 2
Sampling
The sample was collected exclusively from parents whose children were enrolled in
Karachi Down Syndrome Programme (KDSP), a non-profit organisation based in Karachi,
Pakistan that advocate for the value, acceptance, and inclusion of people with Down
Syndrome in Karachi, and provide awareness, family support, healthcare, skill development,
education, training, and early childhood intervention to enable individuals with Down
Syndrome to become independent members of society leading fulfilling lives (What Is
KDSP?, n.d.). Participants were chosen if they had been visiting KDSP for a year or more, so
that the effects of social support received through KDSP could be observed.

24
The sample of 8 participants were collected through volunteer sampling at the KDSP
premises. When mothers came to drop off their children at KDSP, and while their child was
in therapy or in class, the mothers were approached and asked if they would be willing to take
part in an interview regarding their experience of parenting. The researcher introduced herself
as a student of IBA, Karachi conducting research for her undergraduate thesis project. While
their child was preoccupied at KDSP, the mother was interviewed in a separate room.
A field expert was also interviewed. The field expert is a Senior Manager of Early
Intervention and Healthcare at KDSP and has been working at KDSP since 2014 - since its
inception. She was asked about her experiences working in this field, the challenges faced by
the parents and the centre itself, and her recommendations for the government.
Procedure
The interviews were conducted within the KDSP premises. Participants were
approached in the waiting room, and a brief 30-second summary was given regarding the
aims and purposes of the study. They were asked if they agreed to participate – if they said
yes, they were taken to a separate room for the interview.
At the beginning of the interview, participants were initially asked whether they
would prefer the interview be conducted in English or Urdu. The rest of the interview was
then conducted in the language of their choice. They were first briefed about the aims of the
research through a participation information sheet (printed in both Urdu and English) that
was read out to them in the language of their choice. The participant information sheet
contained details about the research aims and questions. It also introduced the researcher and
their affiliations. It also stated their right to withdraw anytime during or after the interview is
conducted. They were also informed of their right to confidentiality and anonymity, and how
it will be maintained by the researcher. Participants were told about any risks involved; they

25
were informed that they may feel distress in answering the questions, and if they do, they will
be provided water and a break, and the interview will be terminated if they require. In
addition, they were informed that they may take a break anywhere in between, and they may
also skip any question they are not comfortable answering. After the participants were briefed
through the participant information sheet, they were administered the consent form to obtain
their informed consent. Participants were also asked explicit permission to record the
interview.
The interview began after informed consent was obtained. Initial questions were
asked regarding their age, gender, socio-economic status, family demographics, and the
residential area they live in. Other questions included their experience of getting the initial
Down Syndrome diagnosis, their child’s educational experience (whether they are enrolled in
a special or inclusive school), their experience with healthcare, if they have any familial
support, community support, support from friends, or if they receive any support from
welfare organizations or official bodies of the government. They were also be asked about the
experience of stress in their everyday lives, its physiological impact, and the time they spend
for themselves or for personal care. At the end, they were asked for recommendations for the
government and public policy – how governmental bodies can support them better. As the
interviews were semi-structured, the researcher asked any relevant questions in the middle to
obtain specific details.
At the end of the interview, the participants were thanked, and the interview was
concluded.
Data Analysis
Data was translated to English (in the cases in which the interview was given in Urdu)
and transcribed. After transcription, the data was analysed through thematic analysis. Codes

26
were generated according to phrases or sentences which denoted specific ideas in the first
cycle of coding. After the first cycle of coding was completed, themes were generated by
going over the data and finding codes that fit under certain themes in the second cycle of
coding. Finally, the combined results and discussion section of this paper was written
according to each theme, relevant to the research questions, to provide a rich and relevant
analysis of the data collected.
Ethical Considerations
Written informed consent was obtained from each participant after they were
administered the participant information sheet. No information was withheld, therefore there
was no deception involved in the study. They were asked permission before recording the
interview. Participants were informed of their right to withdraw at any time during the
interview or after, without any penalty. They were informed of the procedure of how their
anonymity and confidentiality would be maintained.
Participant anonymity was maintained through linked anonymity. Data was obtained
about their age, socio-economic status, occupation, and family status. No questions regarding
names were asked. Codes were used for any names mentioned in the transcriptions. If a very
personal experience which can be an identifier was mentioned in the interview, any
potentially identifying specifiers were omitted from the study and it was only mentioned in
general terms. Participants were informed that despite the researcher’s efforts, however, that
they may be potentially linked to this data.
Participant confidentiality was maintained by informing participants that only coded
transcriptions will be made available to the researcher and supervisor. Participants were also
informed that recordings of the interviews will be deleted after the project is complete, and

27
that the data provided in recording or transcription form will not be made available to
external bodies such as IBA or KDSP.
Special effort was made to ensure personal data provided by the participants are
protected. Signed consent forms were scanned and are stored in a password protected Google
Drive with two-factor authentication enabled. Hard copies of consent forms were shredded
and discarded after scanning. Coded transcriptions are also stored in a Google Drive. Only
the researcher and supervisor have access to this data.
Potential risks included that the parents were asked to recall past educational,
financial, social, or emotional experiences, which could potentially cause psychological
discomfort. In such a scenario, the researcher ceased questioning and provided water and a
break. The researcher reiterated the participants’ right to withdraw without penalty, or if they
chose, to continue the interview later. Any other verbal form of comfort was not offered, to
mitigate any more risk of psychological discomfort.

28
Chapter 4
Results and Discussion
After interviews were conducted and transcribed, several themes emerged as
significant during the data analysis, illustrated in Table 2.
Table 2
Themes
•Unaffordability • Immediate Family

•Experience of Dynamics
Diagnosis • Extended Family Dynamics
•Doctors' Attitudes • Governmental Interventions
• Support from KDSP
Aspects of
Medical
Social
Treatment
Support
The
Experiences
Schooling
of Stress
Experience
•Sources of Anxiety •Difficulty in
•Physiological Admissions
Implications •Frequent Changes and
Withdrawals
Medical Treatment
As individuals with Down Syndrome are more at risk of medical issues and
complications (Bull, 2020; Moreau, 2021; Næss et al., 2017), the participants were asked
several questions were asked regarding their experiences of receiving the first diagnosis for
their child and subsequent doctor and hospital visits.
Unaffordability
Six out of the eight participants reported difficulties in affording medical treatment.
Participants reported that the costs of initial tests such as the Chromosome Analysis Tests and

29
Thyroid-Stimulating Hormone (TSH) test for diagnosis, and further tests for health
complications such as echocardiograms, Brain-Evoked Response Auditory (BERA) tests
were very costly. Several participants reported that their children with Down Syndrome were
born with congenital heart disease, or developed dental or vision-related issues, which
escalated financial burden due to frequent hospital visits and surgeries.
P3 reported that the entire family had to cut down on other expenses to afford the
tests. P2 reported that she had to start a job to finance their child’s medical needs. She states,
‘I was facing financial issue because we need the resource teacher, we need speech therapist,
we need physiotherapy, we need behaviour therapy, and all of this costs a lot - one person
cannot do all of that.’ P5 stated that the financial problems they had to face directly after her
child’s birth due to frequent medical complications were ‘shocking and traumatising’ for her.
Therapies such as speech therapy, physiotherapy, and behaviour therapy required throughout
the course of the child’s early life are also expensive.
Even though there is both private and public healthcare available in Pakistan, P5
reported that she preferred going for private healthcare due to better quality of service – even
if they had to find a way to afford the exorbitant amounts required for it.
Recent statistics corroborate the findings. Farooq and Masud (2021) find that due to
lack of well-structured health facilities to cater to the poorer population of Pakistan, the
population deals with higher rates of sickness and disease creating a financial burden as
around two-thirds of the population finances their healthcare costs themselves, preferring to
use private services over public, due to differences in quality of services.
Moreover, Stabile and Allen (2012) reported families with children with disabilities
having to incur higher direct costs, especially for those children with special healthcare
needs. The study also showed that the mothers often had to curtail work or stop working
altogether to keep up with childcare and household responsibilities, elevating the financial

30
burden, (Stabile & Allen, 2012), which corresponds with the current research, in which 7 out
of the 9 mothers were unemployed.
Research has also shown that parents of children with Down Syndrome often must
bear a heavy burden of costs of medical treatment and care for their children, which is a
significant life problem for them (Rahimi & Khazir, 2019). Ahmed et al. (2013), who
conducted their study on parenting of children with Down Syndrome in Pakistan’s context
reported that due to lack of social support systems in Pakistan, most of these families rely on
local benefactors and charitable organizations to support them financially (such as KDSP),
which is an unstable source of income, and therefore, most of the financial burden of
educating and treating the child is on the family unit.
The results contribute to a clearer understanding of the financial burden borne by
families due to healthcare costs in the context of Karachi, Pakistan, and shine a light on the
need for financial concessions to obtain quality private health services.
Experience of Diagnosis
All participants reported the experience of receiving the diagnosis as unpleasant. All
participants also reported that at time of diagnosis, they did not know anything about Down
Syndrome, and therefore the confusion and lack of information made the experience more
difficult. Out of the 8 mothers who were interviewed, no mother had been told of the
diagnosis prenatally, one was told just after birth, another in a week, and the rest were
informed of the child’s diagnosis late – ranging from a month to 7 months later. Those
mothers who were given the late diagnosis only received the diagnosis after their child fell
severely ill in infancy – leading to doctors investigating the problem further and finally
arriving at a diagnosis.

31
Participants recalled vivid memories of the doctor’s diagnosis of their child, reporting
feeling emotions ranging from disappointment to shock to devastation. P1 reports that the
doctors ‘had completely devastated (them)’, as they had told the parents that the child will be
incapable of doing much in life and will be a constant source of worry. P2 stated that she was
‘disappointed for one day because (she) got upset,’ but eventually accepted it. P3 said, ‘that
time was hard, very hard,’ whereas P4 reported extreme worry. P5 said ‘it was a complete
shock,’ and that the circumstances were ‘extremely stressful… shocking and traumatizing for
me.’ P6 stated that it was like ‘the ground had fallen from underneath me, and the sky had
fallen on our heads.’ P7 said it was a very tough and stressful time, and P8 reported it to be
‘very unpleasant,’ with both she and her husband falling into ‘severe depression.’
Participants’ experiences and emotions around the diagnosis were heavily shaped by
the doctor’s attitude when reporting the diagnosis – the worry and stress lasted a shorter time
if the doctor had presented a positive prognosis for the child. Doctors were reported to have
made statements like, ‘this child will not be able to do anything,’ ‘they are the children who
have similar Mongolian faces,’ ‘if you want him to become a part of army, navy, or become a
doctor, forget it, (the child) cannot do anything like that,’ and ‘I am sorry that (this child) is
going to have a very limited lifespan and she will not be able to do anything that a typical
child can.’ Participants reported that statements like these exacerbated their stress and worry
– which was only alleviated through their own research or after coming to KDSP. They stated
that the doctors were not able to explain the diagnosis well, nor did they appropriately guide
the parents about early intervention. P3 stated, ‘if (the doctor) had guided me earlier about
early intervention, my child would have better results compared to today… when I did not
know what the syllabus was, how could I have reached results?’
Existing research shows that parents of children with Down Syndrome across
different geographical contexts, such as the UK and Ecuador, have had similar experiences of

32
insensitivity from doctors at time of diagnosis (Ali et al, 2013; Huiracocha et al., 2017). Peck
and Conner (2011) illustrated how status differences between physician and patient often led
to a more physician-dominated interaction. Mothers rarely reported the diagnosis of their
child as a positive experience, saying it engendered fear and anxiety, and were more likely to
feel so if the physician emphasized negative aspects of Down Syndrome more than the
positive aspects (Skotko, 2005). Moreover, Huiracocha et al. (2017) also found that doctors
were unable to deal with a stressful situation such as giving a diagnosis of a child to their
parents – they had not been taught the skills to do so, and therefore delayed giving the
diagnosis, which is consistent with findings of the current study. Doctors were reported to
have an arrogant and uncaring attitude at the time of diagnosis – and often did not provide
appropriate guidance for further steps and treatment (Huiracocha et al., 2017). Ali et al.
(2013) also noted that patients were not given the full information required when the
diagnosis was made – leading to patients becoming confused and frightened due to their lack
of knowledge.
The findings are consistent with existing research which calls for a need for
sensitivity training for doctors and physicians in giving diagnoses of intellectual and
developmental disorders – alongside appropriate knowledge regarding early intervention.
Delayed diagnosis or misinformation provided at the onset can have significant implications
for the family – in accepting and dealing with the diagnosis and receiving early intervention
to mitigate increased delay in milestones. Skotko et al. (2009) give recommendations on how
best to break the news of a Down Syndrome diagnosis: it should be given together by the
obstetrician and paediatrician, in a private, comfortable setting as soon as a Down Syndrome
diagnosis is suspected. Moreover, up-to-date information should be provided on support
groups and resources (Skotko et al., 2009).

33
Doctors’ Attitudes
There were mixed responses regarding doctor’s attitudes toward the parents and their
child. P1, P2, P4, P5, and P6 reported that the doctors and nurses in their experience were
generally nice and patient, providing the necessary information and giving a good prognosis
for the child.
However, several participants relayed circumstances of bad experiences with doctors.
P2 reported that specialist doctors do not consider Down Syndrome as a special issue – for
example, they would treat the flu or skin rash of a child with Down Syndrome as flu or skin
rash on any other individual. P8 also reported something similar, that she felt like ‘the doctors
had no idea about children with Down Syndrome … they had no knowledge, no idea that
children with Down Syndrome can have dental problems.’
Other participants reported how doctors often discouraged the parents completely due
to their own lack of knowledge about Down Syndrome. P3 reported that even though the
doctor they visited was kind, he did not guide them about early intervention at the right time.
P6 reported an incident of a doctor treating her and her child ‘very rudely,’ and P7 stated a
doctor discouraged her completely, stating that ‘(the child) will not be in his right mind, his
mind will not work, just feed him and keep him at home.’ P7 also reported that ‘maybe 1 out
of 10 doctors gave us some hope that this child is capable.’
Huiracocha et al. (2017) and Ali et al. (2013) detailed doctors’ insensitivity and lack
of training in dealing with worried parents of children recently diagnosed with Down
Syndrome, in physicians’ use of medical jargon, not appropriately answering questions, and
delaying giving the diagnosis. Other studies cite a similar experience recounted by mothers –
one such study conducted in New Jersey showed that mothers reported physicians using
personal biases and stereotypes in their language, showing pity and a lack of sympathy
(Lalvani & Taylor, 2008).

34
An interesting finding in Lalvani and Taylor’s (2008) study is that physicians showed
disapproval at the mothers’ choice of not obtaining prenatal testing and/or genetic
counselling. In the current study, none of the mothers had received any kind of prenatal
testing or genetic counselling – but none had been guided to do so. This corroborates as
research shows that prenatal testing is available privately in Pakistan only in a few major
cities, and parents often must travel long distances to access the service (Jafri et al., 2015). As
most are not able to avail the service free of charge, a small number of parents avail prenatal
testing, however, research shows that there is an increased interest showed by parents in
getting prenatal testing – and an increasing acceptance of termination of pregnancy
considering results that show prevalence of a severe genetic disorder (Jafri et al., 2015).
Doctors must make an effort to inform parents of prenatal testing in due time – however,
from all mothers interviewed in the current study, none had been guided to do so. Doctors
must also receive sensitivity training in dealing with families of children with disabilities.
Aspects of Social Support
Social support was an important factor that was explored in the interviews, especially
participants’ experiences within the family, with extended relatives, the government, and
KDSP.
Immediate Family Dynamics: Husband’s Neglect and Daughter’s Support
Other than one participant who was a widow, the rest of the seven participants
reported minimal support of their husbands in the caregiving of their child with Down
Syndrome. Most participants reported that their husbands supported their family financially –
but otherwise, the mother took responsibility for everything else. P1 said, ‘Fathers are only
supportive to the extent that they will come along for doctor trips, but you basically have to

35
do everything yourself.’ P5, who has more responsibility as she also has a child with
dyslexia, reported marital disputes with her husband – stating that he comes home late from
work and avoids her because ‘he gets irritated by all the issues and ends up spending all the
time on his mobile phone… my husband is not that understanding.’
Even when asked specifically about their husbands’ support in their child’s daily
routine, the participants would gloss over the question, at most stating that their husband
gives them full support in whatever they want to do for their child – the husband’s role seems
restricted to providing permission and financial support.
On the other hand, the participants who had daughters (aside from their child with
Down Syndrome) all reported varying levels of dependence on their daughters in childcare
and housework. P1 reported that her daughter was eight years old when her child with Down
Syndrome was born, and from then to now, she has been her ‘biggest support’, despite also
having an elder son. P2 stated that she has given a mobile phone to her daughter who is
younger because she is ‘very sensible and takes care of A as well.’ P7 also reported feeling
supported because of her eldest daughters, as they do the housework and help in childcare.
Lastly, P8 called her daughter her ‘right hand’ and said she has played a very vital role in
helping her mother with her sister who has Down Syndrome. It is important to note that the
dynamic remained the same in the families with multiple daughters and sons – the daughters
were depended upon to take the mother’s responsibility when the mother could not – if the
mother was the primary caregiver, then instead of the father, the daughters were the
secondary caregivers.
Research has shown the importance of spousal support in families with disabilities,
and how high levels can lead to a reduction in parental stress, as well as having a positive
impact children’s behaviour (Kanter & Proulx, 2019; Rakap et al., 2023). Research also
shows a mixed response on whether fathers now play a more important role in caring for their

36
children with disabilities, with some studies showing an increasing role of fathers in care of
their children with disabilities (Lee et al., 2008), with fathers reducing work and leisure time
to spend time with their children (Uribe-Morales et al., 2021). The current research, however,
shows that the caregiving burden, along with housework mostly fell on the mother. This is
corroborated by Rakap et al. (2023), who showed that mothers of children with special needs
reported lower spousal support and increased family burden compared to fathers. Other
studies also show similar results, with mothers of children with disabilities reporting higher
depression levels and lower quality of life than fathers (Çolak & Kahriman, 2021; Kazmi et
al., 2014) which corroborates with the present study.
It is an interesting finding that the participants heavily depended on their daughters
for support in housework, childcare, and emotional support, in the absence of their husbands’
(and occasionally sons’) efforts. Research does show that mothers in Pakistan still
increasingly rely on their daughters for housework and childcare (Tarar, 2012). However, it is
important to note that studies also depict that siblings of children with a disability often feel a
greater responsibility for the well-being of their sibling, but also experience more stress and
anxiety (Quatrosi et al., 2023), and their own anxiety levels were directly correlated with
parental anxiety (Koukouriki & Soulis, 2020). Further research on the impact of this apparent
support substitution can shed light on how this may be psychologically affecting the
daughters of the family.
Extended Family Dynamics: Lack of Support and Understanding
7 out of 8 participants reported that extended relatives – those apart from the
immediate family of husband and children – showed a lack of support during the first few
years, stemming from a lack of understanding of the syndrome and societal stigma. P1
reported that in the beginning, ‘they did not understand … even if you explained it to them,

37
they would not understand it.’ P5 reported a similar experience, stating, ‘People were not
accepting or understanding … they would say, why can’t he walk? Why is he like this?’ P6
also reported that relatives would ask her uncomfortable questions such as ‘What has
happened, what is wrong with her? Why isn’t she growing?’
This lack of understanding also often led to mistreatment of the mother and child.
Participants reported that their own brothers and sisters would complain to them that the child
is misbehaving – even if the child was ‘moving even a little,’ as per P1. P1 said that they
would talk and complain without compassion, and would say, ‘look at what this child is
doing.’ Furthermore, P3 reported that the other children, cousins of the child who has Down
Syndrome, would misbehave and blame it on the child because he could not defend himself
verbally. As per P3, the child is ‘the best victim.’ She also noted that both she and her
husband are mentally disturbed by this. Moreover, P6 tearfully gave an account of how a
relative came over with her husband and child, and when P6 left the room, the cousin’s
husband told his wife to keep their son away from the P6’s child, saying, ‘take our son away
from her, we do not know what kind of illness their daughter has, we do not want it to spread
to our son.’ P6 also detailed how they used to live in a joint family but had to move to a
separate house because her in-laws were not understanding of her child, saying, ‘they would
not let (my child) touch their kids.’ Other participants noted similar experiences of
intolerance and ostracization. Due to this mistreatment, several participants said that they
stopped going to their relatives’ houses. P1 reported that the mothers who come to KDSP
discussed how ‘they had all stopped going out or going to other families’ houses.’ She noted
that they took her child out for entertainment but avoided relatives.
6 out of the 7 participants who reported mistreatment and lack of understanding from
extended relatives stated that the relatives’ behaviour improved somewhat with time, once
they had some more understanding regarding Down Syndrome. P3 gives KDSP credit for

38
this, saying that ‘because I am trained, I can train my family … because I was aware,
whatever I learned, I talked about it at home, so inclusion took place automatically.’ She also
reported that they now provide emotional support to her and include her child in everything.
P5 stated that support has increased due to increased societal acceptance.
The stigma and rejection experienced by the mothers, especially during the first few
years after the diagnosis, is a result that is consistent with prior research. Parents of children
with disabilities in Pakistan’s context and beyond report social ostracization from family,
arising from lack of awareness and stigma attached to Down Syndrome (Ahmed et al., 2013;
Rahimi & Khazir, 2019, Suza et al., 2020). As one participant noted, her relative thought that
Down Syndrome may even be contagious – such beliefs stemming from a complete lack of
knowledge leads to ostracization. As reported, mothers stopped visiting other families’
houses to shield themselves and their child from societal judgment and stigma. However, it is
important to note that the participants noted that the stigma has decreased in recent years, as
their misconceptions about Down Syndrome were corrected by the parents of the child, and
research shows that this support leads to improved mental health outcomes (Ha et al., 2018).
It is also prudent to note that the participants who were unable to obtain social and emotional
support from relatives reported that they were able to obtain the same from the community of
mothers at KDSP.
Hopelessness in Governmental Interventions
All 8 participants reported almost zero support from the government, repeating similar
statements such as, ‘I often have to wonder whether we even have a government,’ and ‘there
has been nothing done for these children.’ Most cited that they had gotten the special CNIC
made for their children, which is supposed to provide discounts and benefits on certain
governmental services such as in railway transport. However, participants stated that the

39
special CNIC is ‘useless,’ as when they approach the government employees to avail the
discounts, they seem to have no knowledge of it.
When the participants were asked how they think the government can support them,
several participants expressed feelings of hopelessness, making statements such as, ‘it is
hopeless, there are no facilities for these children at the governmental level,’ ‘there is no
humanity here,’ and ‘I have no hope anyone will do anything.’
Research has shown the lack of implementation of public policy supporting families
with disabilities, from giving concessions in medical care to reserving seats in government
departments (Ahmed et al., 2011). The interviews conducted in the present study give an on-
ground perspective of the despair of citizens hoping for governmental support – it is one
thing to ratify policy into law, but another thing completely to implement it, and primary and
(some) secondary research show the complete negligence of the public sector in this matter.
Social Support from KDSP
All 8 participants stated that their main source of social support is KDSP, reporting
that it has made a very positive difference in their lives. Other than KDSP’s programs that are
specifically tailored for each child, participants report benefitting from the provision of
information services, financial assistance on hospital treatments and KDSP’s own programs,
awareness sessions, taking feedback on their programs and implementing it, and providing
psychological tests and therapies to the mothers as well as their children. Two of the
participants reported feeling more confident since coming to KDSP, with other participants
making statements such as ‘KDSP gives hope the most.’ Participants also reported that their
children are happier since coming to KDSP.
Moreover, when the participants were prompted about whether they receive any
support from friends, 7 out of 8 cited the support of the other mothers who come with their

40
children to KDSP. These mothers sit together in the waiting room while their child goes
through training or therapy at KDSP – and during this time, they reportedly talk about their
experiences and provide emotional support. Participants made statements such as ‘it is a very
good group and they are all very supportive,’ ‘We have a really good understanding amongst
ourselves, I get to spend such a good time at KDSP,’ and ‘We are always ready to help and
support each other.’
Participants stated that it is easier to talk to the mothers about their own experiences
and worries because they do not have to explain, they just understand and relate to it – as per
P7, ‘I do not even have to tell them the whole story for them to understand.’ In the sharing of
problems and worries, these mothers find themselves dealing with similar experiences, which
is reportedly a very big source of emotional support for them. P5 also stated that no one
passes judgement in the group: ‘All of us mothers listen to each other. We never say, “Oh,
this happens in your home? This is what your husband is like?” No one passes negative
comments here.’ These mothers also try to support new mothers who come to KDSP, as per
P6, ‘We help each other a lot emotionally, especially when mothers come with new-borns.
We know that entire experience, so we try to help that mother a lot.’
Welfare institutions such as KDSP serve as protective factors for these families –
providing holistic social support in regard to education, vocational training, information
services, and counselling for both parents and children. Research corroborates how these
centres can positively impact the quality of life of these families (Khan et al., 2020; Semigina
& Chystiakova, 2020; Wang & Brown, 2009), reducing negative impact on mental health.
Research has also emphasized the importance of syndrome-specific support groups in
helping parents cope with a Down Syndrome diagnosis for their child, who provide accurate
and up-to-date information regarding local resources along with social and emotional support
to the parents, in the face of societal ostracization and isolation (Skotko et al., 2009; Esbensen

41
& Seltzer, 2011). This serves as a protective factor for these families – which is corroborated
by the participants’ accounts of finding pockets of happiness and understanding in their day
when spending time with the other mothers.
These results show the absolute importance of having institutionalized, formal
systems of social support for families of children who have intellectual or developmental
disabilities such as Down Syndrome – for some parents, they are a lifeboat in drowning
waters.
The Schooling Experience
Participants were asked specific questions about their child’s education, including the
admissions process and their experience of inclusive vs. special schooling.
Difficulty in Admissions
5 out of 8 participants reported difficulty in enrolling their child in a school, as
inclusive schools often refused admission. P7 reported that the schools would often tell them
to leave, saying, as per P7, ‘Oh, this is your child? Why would you want to send him here,
this is not a special school. Who has sent you here? He will hit and bite here.’ P8 stated that
she also faced struggle in trying to enrol her child, stating, ‘I had to convince each and every
school and often they have flatly refused me on my face, that we will not take her.’ P4 states
that in her experience, even if schools do take in children who have Down Syndrome, they
ask them to leave after 5-10 years when the children are unable to keep up with the typical
children in the class.
Participants reported that even if they were able to convince an inclusive school to
enrol their child, they faced much difficulty in paying exorbitant fees of these schools. P5
stated that those who run inclusive set-ups want to ‘cash it … the educated and trained people

42
have made a business of this field.’ Participants reported that schools also often asked for
additional fees to hire a resource teacher just for their child – which became an added
prohibitive cost for the parents.
Prior research shows that parents, in their concern for their children’s future,
especially a future after one or both parents pass away, carry extreme psychological burden
and stress about schooling their child appropriately to make them independent and productive
members of society (Singal, 2016). Singal (2016) also writes how parents of daughters with
disabilities seemed especially preoccupied with providing high-quality education to their
daughters so that they can live with ‘dignity,’ especially if they are unable to marry in the
face of social stigma. This corroborates with the worry shown by mothers in the current study
in educating their child.
The finding that parents have immense difficulty in obtaining admission for their
child is significant because there is lack of research on this aspect in Pakistan.
Frequent Changes and Withdrawals
Most participants reported frequently switching schools for their child – for several
reasons. P2 reported that after enrolling her in an inclusive school and hiring a resource
teacher, the school ended up withdrawing the child because she was unable to keep up with
the rest of the class. After switching her child’s school again, P2 reported that the other
school merely pampered her and make any effort to teach her anything. P5 had a similar
experience, stating that when she put her child in an inclusive school, ‘They would put him in
the corner and would not pay attention to him, thinking it's useless to work on this child.’
A common issue that 4 participants reported was of toilet-training their child. They
disclosed that due to their child’s toilet times not being looked after properly in school, the

43
child would often come home soiled, which would cause infections. 2 participants reported
withdrawing their child because of behaviour issues that would crop up.
Mothers’ reported issues with inclusive schooling was a surprising finding, as prior
research supports merits of inclusive education in reducing prejudice and promoting trust and
inclusion (Sirlopú et al., 2008; Schwab et al., 2016). The findings therefore emphasize the
importance of teacher training in inclusive classrooms – to ensure the learning needs of each
child in the classroom are being met.
Another interesting finding was mothers’ issues regarding toilet training their child,
which often led to withdrawals from schools. This is corroborated by research which shows
that caregivers often face difficulty in toilet training children with Down Syndrome due to
physical and cognitive limitations, therefore they often take longer to become completely
toilet trained and may relapse due to stress or environmental change (Purnamawati et al.,
2023; Dreher et al., 2022). This shows that schools must take non-educational factors into
account in making their schools truly inclusive.
Experience of Stress
Some other important aspects that were explored in the duration of the interview were
of the mothers’ experience of stress, its physiological implications, and their self-care habits.
Sources of Anxiety
All participants reported feeling varying levels of stress and anxiety, for different
reasons. A common theme that emerged in all the participants’ responses was worry for their
child’s future, especially after both parents pass away. P4, who is a recent widow, states, ‘I
just think that her father is gone, and if something happens to me, what will happen to her? I
just mostly think about this and nothing else.’ P6 reports a similar thought process.

44
P6: Us mothers often talk about this, that we won’t live forever. All of us mothers
have one or two children, so we often talk about who will take care of our children
after this – yes, God is there – but what will happen to them financially?
P5 and P8 report making efforts to ensure that their child obtains a job and becomes
independent, through training their child to develop vocational skills.
Participants with multiple children disclosed their anxiety relating to their other
children. P3 tearfully divulged an account of her older son feeling neglected and unhappy due
to his mother’s increased attentions toward his brother who has Down Syndrome, which led
to a downfall in his grades and being reported for inappropriate behaviour in school – an
incident for which P3 carries a tremendous sense of guilt. P8 reported a similar sense of
worry and guilt for her older daughter.
P8: I don’t want my oldest daughter to feel stressed that I have this burden on me,
because she also has her own life. At times, I must counsel my oldest daughter
because at times she feels upset… because obviously we have to give more time to
my other daughter.
P5 also stated her preoccupation with ‘training’ both of her children to take on responsibility
after she passes.
Participants with younger children reported more fatigue and stress compared to
participants with older children. P7, whose child is 9 years old, reports feeling tired, wanting
‘mental and physical peace’ when her child disobeys her. Other participants reported phases
of overthinking, frustration, and anger. P5 and P7 reported scolding their child or raising their
voice out of anger and feeling guilt afterward.
In addition, mothers’ anxiety remained elevated due to lack of time spent on self-care.
As most participants reported a 15-to-18-hour daily routine, very few participants reported
making time for appropriate self-care during their day, due to the burden of multiple

45
responsibilities. P1 says she says she spends all morning and night with her child and
completes all her housework and cooking while he is in school so that she is able to give him
enough time when he comes home.
P1: You get very little time to yourself … you know when you are at home as a
housewife you start to ignore yourself, so I just stay busy with my child's things … It's
just that it's like you have a daily set routine, you are doing housework, you are
teaching your kids, and so on, so you can't do much for yourself. I just used to talk on
the phone. Even going out was difficult.
P2, P4, and P7 reported no time for self-care in their day, and P3 said she sometimes finds
time to watch television. P5 reported taking care of her plants as self-care, as she has no
social life after marriage, stating that her husband does not like it if she goes out to meet
anyone.
Only P6 and P8 reported having a set routine which included self-care. For P6, this
was a few hours of free time in which she talks to her friends or mother, fixes something in
the house, or does online shopping. For P8, she has set a schedule of reading books, colouring
in adult colouring books, or watching horror shows. It is worth noting that their children are
13 and 14 years old, respectively.
Stress and depression arising from caregiver burden in parents of children with Down
Syndrome is not a surprising finding – several studies corroborate these results (Suza et al.,
2020, McManus et al., 2011, Adelman et al., 2014, Park & Lee, 2022; Millaku & Kraja-
Bardhi, 2022). Worrying about children’s futures is also a common theme (Suza et al., 2020,
Ahmed et al., 2013). An interesting finding is mothers’ sense of guilt toward their other
children in caring for their child with disability. Guilt and feelings of inadequacy of
caregivers have been explored in research, and results show that caregivers feel guilt for
many reasons, such as from feeling frustrated or tired (Gallego-Alberto et al., 2020). Another

46
interesting finding is the impact on siblings’ quality of life on having a sibling with a
disability, which research has shown can be negative, leading to increased anxiety and stress
(Quatrosi et al., 2023; Koukouriki & Soulis, 2020).
Results exemplify the need for family counselling to mitigate the negative
psychological effects arising from a lack of social support and increased stress in families
with children with Down Syndrome.
Physiological Implications
Participants mainly reported feeling fatigue and loss of appetite from lack of sleep and
a busy routine. When asked about their daily routine, most mothers accounted for a 15-to-18-
hour daily routine without breaks, except for mealtimes. All participants were responsible for
childcare, housework, and cooking of their household. P1 reported issues with high blood
pressure, P5 reported weakness, P6 said she developed diabetes which she suspects is
because of holding too much stress in her body, and P7 reported body aches. Physiological
problems seemed to manifest more in mothers with younger children compared to older
children.
As caregiving burden carries with it psychological implications of stress, anxiety, and
depression, it is unsurprising that research shows its negative outcomes on physiological
health, such as higher blood pressure, fatigue, headaches, sleep problems, and other
musculoskeletal symptoms (Gallagher & Whiteley, 2012; Karni-Visel et al., 2023). Though
no participant reported severe physiological issues, caregivers’ decreased quality of life is a
significant matter – one that should also be addressed by healthcare providers.

47
Conclusion
In conclusion, the current study illustrates a complete and thorough picture of the
experiences of social support and stress of mothers of children of Down Syndrome. Several
themes emerged in analysis of textual data. Mothers reported facing difficulties in affording
good quality, private healthcare. Moreover, they reported that healthcare providers often deal
with parents of children with Down Syndrome with a lack of empathy and sensitivity, not
providing accurate information at the appropriate time. Furthermore, the theme of social
support revealed that mothers, experiencing neglect and lack of support from their husband,
relatives, and the government, may substitute this lack of social support by obtaining it
through other means, as illustrated in the figure below.
Table 3
Substitution of Social Support
•Relying on support of daughter

Husband's Neglect
Extended Relatives: Lack •Obtaining social support through mothers'

of Understanding support group at KDSP
Lack of Governmental •Obtaining social support from KDSP

Support
In addition, families receive little to no support from governmental organizations, instead
relying on organizations such as KDSP for social support and welfare services. Mothers also
reported difficulty in enrolling their child into inclusive schools – and often faced issues with
the quality of education offered to their child in an inclusive set-up. Lastly, the experience of
caregiving burden and stress had a physiological impact on the health of mothers.

48
Implications and Recommendations
The current study holds significant implications for families of children with Down
Syndrome, healthcare providers, schools, governmental organizations, and non-profit welfare
organizations. For families of children with Down Syndrome, both immediate and extended,
the current study shows the significance of supporting the mother to mitigate parental stress
which can cause long-term psychological and physiological issues. Fathers must play a
bigger role in the delegation of household tasks and childcare, and extended relatives must
play an active part in providing social and emotional support to the families with children
with disabilities. However, these changes cannot occur in a vacuum. Non-profit organizations
must run media campaigns to tackle stigma and increase awareness of disabilities, to reduce
the fear and confusion that causes ostracization of such families. Moreover, healthcare
providers must ensure they have the appropriate knowledge of sensitive and empathetic
diagnosis delivery, as well as specifics of developmental and intellectual disabilities to be
able to improve the quality of life of the children and their families. The schooling system
must work on training their teachers to make classes inclusive and ensure equal learning of
neurotypical and neurodivergent children side by side.
In this study, the mothers and field expert were specifically asked about how they
think the government and public policy can support families with children with disabilities
better. The most common response was of financial assistance. The participants noted that at
some point or another, all of them had financial issues in obtaining medical treatment and
different therapies, enrolling their child(ren) in quality private schools, and running a
household with multiple children, and hence, multiple expenses. The law also details that
individuals with disabilities are entitled to financial concessions in medical and school fees –
but participants report a complete lack of implementation in this aspect.

49
A few participants advocated for the government organizing special schooling for
their children – citing that inclusive schooling, though it has its merits, often leads to
marginalizing of students with Down Syndrome as their learning needs are not met. Other
participants, and the field expert, believe that the government should implement strictness
regarding inclusive schooling to ensure that schools are unable to refuse admission to
children with disabilities.
All participants noted the experience of ostracization from family and community due
to stigma attached to the disability, and lack of awareness. They cited the need for awareness
campaigns on mass communication channels – to increase awareness regarding Down
Syndrome and what it entails. A challenge noted by the field expert here, however, was that
any campaign run is more likely to increase awareness of general disability and not Down
Syndrome, as that is a niche, which again may not completely tackle the lack of knowledge of
the disability in society.
Secondary research has shown that rights regarding schooling, medical treatments,
and employment of individuals with disabilities have been ratified into law, but there is a
complete lack of implementation. The mothers and field expert cite the importance of
implementing these laws to increase percentage of people with Down Syndrome in inclusive
schools, to ensure they receive proper healthcare and vocational trainings at subsidized costs,
and that they are able to secure gainful employment to become independent and productive
members of society. Participants who had gotten the Special CNIC made for their children
ask for the government to increase awareness of its concessions in public services – so that
families are able to secure the benefits promised.
The interview with the field expert revealed that though it may be idealistic to expect
that the government opens organizations such as KDSP, they can still be expected to support
organizations such as KDSP who support these families, such as through grants.

50
Limitations and Avenues for Further Research
This research carries with it several limitations. As the study is qualitative, the sample
size collected is relatively small, with a total of 8 primary and 1 secondary participant.
Moreover, the participants were only mothers – fathers were not interviewed due to
accessibility issues. Therefore, the parenting experiences may not be generalizable to fathers
of children with Down Syndrome. All the participants were also Muslim, again restricting the
generalizability of the study – parents of children with Down Syndrome who are also
minorities may face a double penalty of stigma in society, an aspect that this study does not
explore. The entire sample was also collected from KDSP; therefore, all mothers were
receiving some kind of social support – making them unrepresentative of the total population
of families of children with Down Syndrome in Karachi, Pakistan, most of whom may not be
receiving such support.
In addition, most of the interviews were conducted in Urdu. As the researcher
translated and transcribed the data without assistance, there is a possibility of difference in
interpretations or loss of meaning in translating from Urdu to English – which affects the
reliability of the study. Reliability is also affected due to the nature of the research being
qualitative - as it requires interpretation, the element of subjectivity arising from the
researcher’s own biases and experiences may affect decrease the study’s reliability.
Moreover, as with all qualitative research, there is a chance of interviewer bias skewing the
data – the participants may have changed their answers according to what they believe the
researcher wanted to hear.
The current study, considering its limitations, carries with it significant implications
for further research into the field. The same study could be replicated on a larger sample to
increase reliability. In addition, as the current study only focused on mothers in the context of
Karachi, Pakistan, further research can be conducted on the experience of parenting a child

51
with Down Syndrome from a father’s perspective. Moreover, taking into account parents
from smaller cities with lesser resources may provide a more nuanced picture of the
experience of such families. Lastly, more research must be done into the needs analysis of
people with disabilities in the context of Pakistan – beyond Down Syndrome.

52
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Parenting A Child With Down Syndrome in Karachi Pakistan - Mother

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SSLA Culminating Experience Undergraduate Research Projects

Parenting a child with Down Syndrome in Karachi, Pakistan:

Follow this and additional works at: https://ir.iba.edu.pk/sslace

and Social Support

Culminating Experience Research Project

submitted to the Department of Social Sciences and Liberal Arts

in partial fulfilment of the requirement for the Degree of Bachelor of Science

Social Sciences and Liberal Arts

Completed under the supervision of Dr. Ayesha Zia

Institute of Business Administration

Published by iRepository, 2023

Parenting a Child with Down Syndrome in Karachi, Pakistan: Mothers’ Experiences of

Published by iRepository, 2023

Limitations and Avenues for Further Research ................................................................................ 50

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reader and providing such thorough and valuable feedback.

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organizations for social support, reportedly receiving no governmental assistance. Lastly,

curate a set of recommendations, which included governmental provision of concessions in

Keywords: Down Syndrome, parenting, social support, stress, stigma, mothers

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Parenting a Child with Down Syndrome in Karachi, Pakistan: Experiences of Stress

and Social Support

moderately, ranges from mild to severe (Bull, 2020).

issues such as pulmonary artery hypertension, respiratory disorders, hearing impairments,

mingling with other children (AlShatti et al., 2021).

Pakistan has little availability of recent statistics on the prevalence of Down

Published by iRepository, 2023

Karachi, Pakistan (Rahman & Obaid-ur-Rahman, 2005).

Research conducted on parenting of children with Down Syndrome and other

Stress, according to the APA dictionary, refers to ‘the physiological or psychological

response to internal or external stressors,’ and is often accompanied by physiological bodily

responses such as palpitations, sweating, shortness of breath and so on (APA Dictionary of

Syndrome, considering factors such as socio-economic background, lack of social support,

and financial situation, may lead to high parental stress in parents.

The experience of caregiving burden, i.e., negative outcomes such as multifaceted

Dictionary of Psychology as ‘the negative social attitude attached to a characteristic of an

Published by iRepository, 2023

individual.’ (APA Dictionary of Psychology, n.d.).

coping’ (Esbensen & Seltzer, 2011, p. 4).

positive impact on families in the provision of early intervention services, physical or

intellectual training, emotional support, information services, counselling, and connecting

decision-making process regarding allocation of resources (Wang & Brown, 2009).

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There is limited research conducted in the context of Karachi, Pakistan regarding

experiences of stress of mothers of children with Down Syndrome in Karachi, Pakistan. It

family, community, non-governmental welfare organizations, healthcare and education

a field expert, involved in a non-governmental welfare organisation called Karachi Down

family, community, NGOs, healthcare providers, and the government.

Published by iRepository, 2023

infrastructures of social support put in place by governmental and non-governmental bodies

are significant to the experience of parenting of children with Down Syndrome.

in Pakistan, however, they must be analysed through a critical lens.

The Disabled Persons’ (Employment and Rehabilitation) Ordinance, passed in 1981,

rehabilitation, and welfare’. It defines disabled persons as follows:

"Disabled person" means a person who, on account of injury, disease, or congenital

deformity, is handicapped for undertaking any gainful profession or employment in

handicapped or mentally retarded (The Disabled Persons’ (Employment and

Rehabilitation) Ordinance, 1981, p. 1).

establishment of training centres by Provincial Councils. It also states the establishment of a

Published by iRepository, 2023

disabilities in the planning and implementation of educational, training, and rehabilitation