CHAPTER TWO

LITERATURE REVIEW

Introduction

This chapter reviews literature related to the study. It presents the theoretical framework,

conceptual review, and empirical review. The theoretical framework was employed to review

two theories that concern the role of caregivers in developing children followed by a

conceptual review that touched on the meaning of caregivers, intellectual disability, and the

concept of development among children. The empirical review delves into previous studies to

cumulate views and perspectives on work done in the area and identify gaps in earlier studies

to contextualise this study. The precise area reviewed includes; caregivers, the role of the

caregivers, development among children, intellectual disability, and the influence of

caregivers on children with intellectual disability.

Conceptual Review

Caregivers

The role of caregivers has gained increasing attention in both research and policy domains, as

the demands and challenges faced by those providing care to loved ones have become more

widely recognized. Caregiving is a complex and multifaceted phenomenon, involving

physical, emotional, practical, and financial dimensions (Reinhard et al., 2019). This

literature review examines the key conceptual frameworks and theoretical perspectives used

to understand caregivers' experiences and needs in developing children with intellectual

disability.
Caregivers provide care and support to someone unable to manage their daily activities

independently due to age, illness, disability, or other conditions. Caregivers can be family

members, friends, or professional care workers. They play a critical role in the healthcare

continuum, offering emotional and physical support.

The relational and emotional aspects of caregiving have also been a focus of the literature.

Caregiving often involves close, intimate relationships between the caregiver and care

recipient, and the quality and dynamics of these relationships can profoundly influence the

meaning and experience of caregiving (Nolan et al., 2003). For example, caregiving between

spouses may carry different emotional and practical implications than caregiving between

adult children and aging parents (Kahn et al., 2013).

The life course perspective further emphasizes the temporal and developmental dimensions

of caregiving, recognizing that the meaning and impact of caregiving can shift over time as

the caregiver and care recipient navigate various life stages and transitions (Bastawrous,

2013). Longitudinal studies have revealed how the caregiving experience can evolve in

response to changes in the care recipient's condition, the caregiver's life circumstances, and

the availability of social and institutional support (Sörensen & Pinquart, 2000).

The vast demand for the services of caregivers has increased the number of them we have in

our time. Caregivers can be categorized based on their relationship to the care recipient, the

setting in which they provide care, and whether they are compensated for their work.

Caregivers can be broadly categorized into the following groups: formal caregivers,

professional caregivers, such as nurses, social workers, and home health aides, who are paid

to provide care. These caregivers typically have specific training and qualifications to provide

medical, emotional, or practical assistance to individuals in need. Formal caregivers often

work in healthcare settings, such as hospitals, nursing homes, or hospices, or they may

provide in-home care services.

Family members, friends, or neighbors who provide unpaid care and support to

individuals in need are also regarded as informal caregivers. Informal caregivers may assist

with activities of daily living, medication management, emotional support, or coordination of

care. They may be spouses, adult children, siblings, or other relatives, and their caregiving

responsibilities can vary in intensity and duration.

There are other forms of caregiving such as individuals who provide care and support

voluntarily, often through community organizations or non-profit groups. Volunteer

caregivers may assist with a variety of tasks, such as providing companionship,

transportation, or assistance with daily living activities. There is another known as the

specialised caregivers, they may work with individuals with specific needs, such as the

elderly, individuals with disabilities, or those facing terminal illnesses.

Individuals who have personal experiences with a particular condition or situation and

provide support and guidance to others facing similar challenges. Peer caregivers can offer

emotional support, practical advice, and a shared understanding of the unique challenges

faced by the care recipient.

They may be involved in support groups, online communities, or specialized programs that

connect individuals with similar experiences.

We have specialized caregivers, which are individuals who have specific expertise or training

in caring for individuals with particular needs, such as dementia, mental health conditions, or

end-of-life care.

These caregivers may work in specialized settings, such as memory care facilities or

palliative care units, or they may provide specialized services within the community.
When conducting a literature review, it's important to consider the unique perspectives,

challenges, and needs of each type of caregiver, as well as how they may interact with and

support the care recipient. This understanding can help inform the research questions,

methodologies, and implications of the study.

Roles of caregivers

Families and other caregivers may find that raising a kid with an intellectual handicap

is a complicated and varied process. Significant limits in cognitive functioning and adaptive

behaviour are hallmarks of intellectual disabilities, which can pose particular difficulties and

obligations for caregivers (American Association on Intellectual and Developmental Disabil-

ities, 2021).

For children with intellectual disabilities, caretakers play a more involved role than just giv-

ing them the necessities of life. According to Pelchat et al. (2019), caregivers often take on

the role of advocates, assisting in navigating the healthcare and educational systems to guar-

antee that their families' needs are satisfied. According to Cooke and Hanline (2016), they

could also help with the planning of therapeutic interventions including speech, occupational,

and physical therapy, which are frequently essential for a child's growth and well-being.

Caregivers of children with intellectual disabilities may encounter heavy emotional and psy-

chological challenges in addition to the practical aspects of caregiving. Increased levels of

stress, anxiety, and caregiver burnout can result from providing care for a kid with special

needs (Giallo et al., 2019). As they come to terms with their child's diagnosis and any poten-

tial lifetime consequences, caregivers may also feel loss, grief, and uncertainty (Lalvani,

2015).

It is common for caregivers to have a crucial role in upholding the entire family sys-

tem, so their influence goes beyond just one child. According to Neely-Barnes and Dia

(2008), caregivers may face difficulties in juggling the requirements of other family members
with those of the kid with an intellectual handicap. This can result in conflict or feelings of

guilt.

Research has shown that caregivers of children with intellectual disabilities generally emerge

from this experience with resilience and fortitude, despite the tremendous responsibilities and

obstacles they confront. According to Bayat (2007), caregivers may grow in the importance

of variety, empathy, and the will to stand up for their children and others with similar needs.

Development among children

The journey of child development encompasses a multifaceted progression across var-

ious domains, including physical, cognitive, social, and emotional growth. Understanding

these intricate processes is crucial for supporting children's overall well-being and helping

them reach their full potential.

The physical development of children involves the maturation and growth of their

bodies, encompassing the development of both gross and fine motor skills (Gallahue & Oz-

mun, 2006). Infants and young children undergo rapid physical changes, with their bodies

growing, strengthening, and becoming increasingly coordinated over time (Gesell, 1928).

Milestones such as crawling, walking, and manipulating objects are important indicators of

early childhood physical development.

Cognitive development, on the other hand, relates to the growth and maturation of

children's mental processes, including perception, memory, problem-solving, and language

acquisition (Piaget, 1952). Seminal theories, such as Piaget's stages of cognitive develop-

ment, have provided valuable insights into the evolving nature of children's thinking and rea-

soning abilities (Piaget, 1952). As children progress through these developmental stages, they

demonstrate increasingly complex and sophisticated cognitive skills.

 Social development in children concerns the ways in which they interact with others,

form relationships, and navigate the social world (Erikson, 1950). This involves the

acquisition of social skills, the development of self-awareness and understanding of others,

and the ability to engage in cooperative and prosocial behaviors (Rubin et al., 2006). The

quality of children's early social experiences, such as those within the family and peer group,

can significantly impact their social-emotional well-being.

Emotional development in children is closely intertwined with social development,

encompassing the ways in which they understand, express, and regulate their emotions

(Saarni, 1999). This includes the development of self-awareness, emotional regulation, and

the capacity for empathy (Denham, 1998). Children's emotional competence is closely linked

to their overall well-being and the quality of their relationships with others.

While these developmental domains are often discussed separately, it is essential to recognize

their interconnectedness and mutual influence (Bronfenbrenner, 1979). The development of a

child is a complex and dynamic process, shaped by a myriad of factors, including biological,

environmental, and socio-cultural influences (Lerner, 2006).

Intellectual disability

The understanding of intellectual disability has evolved, reflecting a range of cultural per-

spectives and societal attitudes. In many traditional societies, individuals with intellectual dis-

abilities were often viewed through a spiritual or supernatural lens, sometimes seen as pos-

sessing special powers or divine wisdom, but also leading to their marginalization and segre-

gation (Ingstad & Whyte, 1995).

The medical model of disability, which emerged in the 20th century, framed intellectual dis-

ability as a biological or neurological condition requiring clinical intervention and treatment

(Morrow, 2014). However, this approach sometimes led to the institutionalization and medi-
calization of individuals with intellectual disabilities, overlooking their social and emotional

needs.

In more recent decades, the social model of disability has gained prominence, shifting the fo-

cus from the individual's impairment to the societal barriers and attitudes that hinder the full

inclusion and participation of individuals with intellectual disabilities (Oliver, 1990). This

perspective emphasizes the importance of accessibility, accommodations, and the dismantling

of stigma and discrimination to create more inclusive environments.

The field of disability studies has offered critical analyses of how intellectual disabil-

ity is constructed, represented, and experienced within various cultural, historical, and politi-

cal contexts (Goodley, 2017). This field has highlighted the inherent worth and dignity of in-

dividuals with intellectual disabilities while acknowledging the diversity of their lived experi-

ences and perspectives.

Moreover, the self-advocacy movement, led by individuals with intellectual disabili-

ties themselves, has played a crucial role in challenging societal perceptions and advocating

for their rights, autonomy, and inclusion (Goodley, 2005). This movement has empowered in-

dividuals with intellectual disabilities to assert their voice, challenge stereotypes, and shape

the discourse around intellectual disability.

Intellectual disability (ID) in children encompasses a range of cognitive and adaptive func-

tioning impairments that manifest during the developmental period, typically before the age

of 18 (American Psychiatric Association, 2013). While intellectual disability is often consid-

ered a single condition, it can be classified into several distinct types, each with its own char-

acteristics and implications.

Types of Intellectual Disability

Mild Intellectual Disability: Children with mild intellectual disability typically have an IQ

score between 50-69 and demonstrate some delays in cognitive and adaptive skills, but are

often able to live independently and participate in mainstream educational settings with ap-

propriate accommodations and support (Schalock et al., 2010).

Moderate Intellectual Disability: Children with moderate intellectual disability typically have

an IQ score between 35-49 and exhibit more significant delays in intellectual and adaptive

functioning, requiring more intensive educational and support services to develop skills nec-

essary for semi-independent living (Schalock et al., 2010).

Severe Intellectual Disability: Children with severe intellectual disability typically have an IQ

score between 20-34 and exhibit profound limitations in intellectual and adaptive skills, re-

quiring comprehensive, lifelong support and specialized educational programs to acquire ba-

sic self-care and communication abilities (Schalock et al., 2010).

Profound Intellectual Disability: Children with profound intellectual disability typically have

an IQ score below 20 and demonstrate the most significant impairments in intellectual and

adaptive functioning, often requiring around-the-clock care and support for even the most ba-

sic daily activities (Schalock et al., 2010).

It is important to note that the severity of intellectual disability can be influenced by a variety

of factors, including genetic conditions, environmental factors, and the presence of co-occur-

ring disabilities or medical conditions (Maulik et al., 2011). Additionally, the classification of

intellectual disability may shift over time as children develop and their support needs change.

Regardless of the type of intellectual disability, early identification, access to appro-

priate educational and support services, and a focus on fostering independence and self-deter-

mination are crucial for promoting the well-being and optimal development of children with

intellectual disabilities (Wehmeyer & Abery, 2013)

Causes of Intellectual Disabilities

There are several potential causes of intellectual disability, including environmental or

hereditary factors. Comprehending the fundamental reasons is essential for prompt detection,

assistance, and management. The following list includes genetic, prenatal, perinatal, and

postnatal factors as common causes of intellectual disability.

Genetic Factors: Intellectual disability may result from inherited diseases and genetic

abnormalities. Down syndrome, fragile X syndrome, and genetic conditions such as

phenylketonuria (PKU) are a few examples.

Prenatal variables: There is a chance that some prenatal variables will raise the intellectual

disability risk. These include insufficient prenatal care, exposure to chemicals or drugs (such

as alcohol or some medications), maternal malnutrition, and infections (like rubella or CMV)

in the mother.

Perinatal Factors: Intellectual disability may result from difficulties encountered during

labour and the early postnatal phase. Birth trauma, asphyxia, premature birth, and oxygen

deprivation are a few examples of factors that may have an effect.

THEORETICAL REVIEW

Early interactions between children and their primary caregivers are crucial, according to at-

tachment theory, which Mary Ainsworth and John Bowlby developed. According to this hy-

pothesis (Bowlby, 1969; Ainsworth, 1978), a person's emotional and social development is

greatly influenced by the quality of these early relationships. The fundamental ideas, import-

ant research, and ensuing ramifications of attachment theory are examined in this study.
The foundation of attachment theory is that children have an inbuilt urge to develop strong

emotional ties with their caretakers. British psychologist John Bowlby postulated that attach-

ment behaviuors are survival-related and biologically determined. Bowlby distinguished sev-

eral essential elements of attachment:

The need to stay close to the individuals we are attached to is known as proximity mainten-

ance.

Safe Haven: Turning to the attachment figure in times of danger or terror to feel secure and

protected.Using the attachment figure as a secure base from which the child can investigate

the surroundings is known as "Secure Base."Anxiety that arises when the attachment figure is

not there is known as separation distress (Bowlby, 1969).

Based on his research, Bowlby suggested that certain attachment behaviuors have been natur-

ally chosen to protect the survival of the young. certain ideas were informed by evolutionary

biology, psychoanalysis, and ethology. According to his theory (Bowlby, 1969), children are

biologically predisposed to develop relationships with other people to live.

Developmental psychologist Mary Ainsworth built on Bowlby's ideas with her empirical re-

search, most notably the "Strange Situation" approach. The purpose of this experiment was to

study attachment bonds between a child and caregiver, usually at the age of one year. A series

of separations and reunions between the child and caregiver occurs in The Strange Situation,

which enables researchers to categorize attachment into several styles (Ainsworth, Blehar,

Waters, & Wall, 1978).

Secure attachment is characterized by a child's confidence in the availability and responsive-

ness of their caregiver(s). Securely attached children have developed a positive internal work-
ing model of themselves as worthy of love and care, and of their caregivers as reliable and

supportive (Bowlby, 1969, 1982).

Anxious-ambivalent attachment is characterized by a child's heightened anxiety and uncer-

tainty about the availability and responsiveness of their caregiver(s). These children have de-

veloped an inconsistent internal working model, where they are unsure whether their needs

for comfort and support will be met (Ainsworth et al., 1978). Anxious-ambivalent children

may exhibit clingy and dependent behaviors, along with heightened emotional responses and

difficulty regulating their emotions. They may also demonstrate low self-esteem and diffi-

culty in forming secure relationships with others (Mikulincer & Shaver, 2007).

Anxious-avoidant attachment is characterized by a child's tendency to avoid or dismiss the

need for comfort and support from their caregiver(s). These children have developed a nega-

tive internal working model, where they view themselves as unworthy of love and care, and

their caregivers as unavailable or rejecting (Ainsworth et al., 1978).

Anxious-avoidant children may appear independent and self-sufficient, but they often strug-

gle with intimacy and emotional expression. They may have difficulty trusting others and

forming close relationships, and may also exhibit behavioral problems and emotional distress

(Mikulincer & Shaver, 2007). This child may ignore their caregiver and express apathy to-

ward them. When these children are reunited, they don't seem to be distressed or look for

much consolation.

Insecure-Resistant (Ambivalent) Attachment: When the caregiver returns, the children not

only behave clingingly and dependently but also become resistive and challenging to console.

When the caregiver departs, they become quite upset.

Disorganized attachment is a more complex and concerning attachment style, characterized

by a child's lack of a consistent strategy for seeking comfort and support from their

caregiver(s). These children have experienced inconsistent, frightening, or abusive caregiv-

ing, which has led to the development of a disorganized internal working model (Main & So-

lomon, 1990).

Disorganized children may exhibit a range of conflicting behaviors, such as approaching their

caregiver with a mix of avoidance and resistance, or displaying disoriented and confused be-

haviors. They are at a higher risk of developing emotional and behavioral problems, includ-

ing dissociative disorders and other mental health issues (van IJzendoorn et al., 1999).

Ainsworth's Strange Situation provided a robust method for classifying attachment styles and

demonstrated the critical role of early attachment experiences in shaping future relational pat-

terns.

Implications and Extensions of Attachment Theory

Attachment theory has far-reaching implications for understanding human development, par-

ticularly in the areas of emotional regulation, social relationships, and mental health. Re-

search has shown that secure attachment in infancy is linked to positive outcomes such as

higher self-esteem, better peer relationships, and resilience in the face of adversity (Sroufe,

2005).

The relevance of attachment theory lies in its ability to provide a comprehensive framework

for understanding the impact of early caregiving relationships on human development and

well-being. Attachment theory has been extensively researched and applied across various

domains, highlighting its significant implications for a wide range of psychological and soci-

ological phenomena.
One of the primary ways in which attachment theory is relevant is in its ability to explain the

influence of early childhood experiences on later developmental outcomes. Numerous studies

have demonstrated that the quality of attachment relationships formed in infancy and early

childhood can have long-lasting effects on an individual's emotional, social, and cognitive

functioning (Sroufe, 2005; Fearon et al., 2010). Securely attached children, for instance, have

been found to exhibit better self-regulation, social competence, and academic achievement

compared to their insecurely attached peers (Sroufe, 2005; Colonnesi et al., 2011).

Attachment theory is also highly relevant in the context of clinical psychology and psycho-

therapy. The attachment patterns established in childhood have been shown to influence an

individual's interpersonal functioning and vulnerability to various mental health difficulties,

such as depression, anxiety, and personality disorders (Mikulincer & Shaver, 2016; Dozier et

al., 1999). Understanding a client's attachment history and style can inform therapeutic ap-

proaches and interventions, potentially enhancing the effectiveness of treatment (Bowlby,

1988; Mikulincer & Shaver, 2012).

Furthermore, attachment theory has implications for parenting and caregiver-child relation-

ships. The theory emphasizes the importance of caregiver sensitivity, responsiveness, and

consistency in fostering secure attachment relationships, which in turn can promote positive

developmental outcomes for children (Ainsworth et al., 1978; De Wolff & van IJzendoorn,

1997). Attachment-based parenting interventions are effective in supporting caregivers and

improving child-caregiver relationships (Bakermans-Kranenburg et al., 2003; Steele et al.,

2014).

Beyond the parent-child context, attachment theory has also been applied to a range of other

relational contexts, such as teacher-student relationships, adult romantic relationships, and

therapeutic alliances (Mikulincer & Shaver, 2016; Bergin & Bergin, 2009; Mallinckrodt,

2010). In each of these domains, the principles of attachment theory provide valuable insights

into the dynamics and quality of interpersonal relationships.

Overall, the relevance of attachment theory lies in its ability to offer a comprehensive under-

standing of human development and interpersonal functioning, with important implications

for various fields, including clinical psychology, developmental psychology, education, and

social work.

SOCIAL LEARNING THEORY

Social learning theory, developed by psychologist Albert Bandura, is a influential

framework for understanding how individuals acquire new behaviors, attitudes, and skills

through observational learning and modeling (Bandura, 1977). At the core of this theory is

the premise that people can learn by observing the actions and consequences experienced by

others, without necessarily engaging in the behavior themselves.

The primary mechanism of social learning, as proposed by Bandura, is observational

learning or modeling (Bandura, 1986). Through observing the behaviors of others, known as

models, individuals can acquire new responses and integrate them into their repertoire of

behaviors. This process involves four key elements: attention, retention, reproduction, and

motivation (Bandura, 1977).

Attention refers to the individual's ability to focus on and perceive the relevant aspects of the

model's behavior. Retention involves the cognitive processes that allow the observer to store

and remember the observed actions. Reproduction entails the individual's ability to actually
perform the modeled behavior. Finally, motivation encompasses the internal and external

factors that influence the individual's decision to engage in the observed behavior (Bandura,

1986).

Bandura's research has demonstrated that people are more likely to attend to and model the

behaviors of individuals who are perceived as attractive, competent, or similar to themselves

(Bandura, 1977; Bandura & Huston, 1961). Additionally, the consequences experienced by

the model, whether positive or negative, can significantly impact the observer's motivation to

engage in the observed behavior (Bandura, 1977).

Social learning theory has been applied in a variety of contexts, including education,

health promotion, organizational behavior, and clinical psychology (Schunk & Usher, 2019;

Glanz et al., 2015; Manz & Sims, 1981; Morgenstern et al., 2016).

In the educational domain, social learning theory has informed the development of

instructional strategies that capitalize on the power of observational learning and modeling.

For instance, the use of peer tutoring, where students learn from observing and interacting

with their peers, is an effective approach for enhancing academic performance and social

skills (Ginsburg-Block et al., 2006; Topping, 2005).

Within the field of health promotion, social learning theory has been employed to design

interventions aimed at encouraging healthier behaviors, such as physical activity, healthy

eating, and smoking cessation. By using role models and peer support, these interventions

have demonstrated success in facilitating behavior change and improving health outcomes

(Glanz et al., 2015; Baranowski et al., 1990).

In the organizational context, social learning theory has been applied to understand and

enhance leadership development, team dynamics, and organizational learning. For instance,

research has shown that leaders who model desired behaviors and provide opportunities for
observational learning can positively influence the skills and attitudes of their subordinates

(Manz & Sims, 1981; Morgenstern et al., 2016).

While social learning theory has been widely influential, it has also faced some

criticisms and limitations. Some researchers have argued that the theory places too much

emphasis on the role of external factors, such as models and reinforcement, and may neglect

the importance of internal cognitive processes and individual differences (Bandura, 1986;

Rosenthal & Bandura, 1978). Additionally, the theory has been criticized for its inability to

fully explain the acquisition of complex behaviors and the role of self-regulation in the

learning process (Zimmerman, 2000).

EMPIRICAL REVIEWS

Roles of caregivers

According to a study conducted by Rowe (2003), a primary caregiver must be aware

of their duties and responsibilities when providing care for children with disabilities. Their

mental and physical capacity to perform their jobs effectively is impacted by this. Because

each caregiver connects with the function of the caregiver, a certain picture of the caregiver

and indirectly of a patient is created. The majority of unpaid caregivers eventually take on the

job of caregiver, which puts additional stress on them (Harding and Leam, 2005). According

to Clarke (2001), providing care is a role that involves tensions on a variety of levels,

necessitating the development of efficient coping mechanisms by caregivers.

According to Slade (2010), caregivers are frequently entrusted with the fundamental

duty of managing their emotions, including any feelings they may have toward the patient

and the situations surrounding the patient's wellbeing. Eventually, the person finds them-

selves in a position where their patients' needs come before their own by taking on the job of
caregiver. However, Semiatin & O'Conner (2012) pointed out that the caregiver's function

must also be understood in the context of the broader caregiving idea. This is especially im-

portant when taking into account how various environmental elements interact with one an-

other and how they affect one another mutually.

A study by research by Margaret et al.(2015),indicated that caregivers carry out their

duties in a way that reflects how a family operates because it comes naturally to them and be-

cause of their own experiences as wives and mothers. They saw their main duties as making

sure the kids had access to necessities like food, and they carried out this responsibility by

seeing to it that the kids eat at mealtimes. The study showed their believe that it is their duty

to supervise the upkeep of vulnerable children's surroundings and their hygiene. It is plausible

to infer that their views of their tasks and responsibilities are shaped by their societal posi-

tions as mothers and women, as well as demonstrated by the research done by Razavi and

Staab (2010).They again indicated that caregivers primary duty and the job they do for the

most of the day is to see the provision of essential resources. They use this word because they

see themselves as providing a motherly role to vulnerable children, who they see as their

moms.

In Margaret et al. (2018) study, the caregivers saw themselves as significant agents in

the personal, social, academic, and professional growth of the children under their supervi-

sion.

Like all other children raised in families, vulnerable children go through distinct stages of de-

velopment and must grow in various areas of their lives.

Thus, caregivers teach children socially acceptable behaviours by drawing on their own spir-

itual beliefs to instill personal values and morals. In addition, caregivers offer assistance and

direction for the advancement of their education and profession. They help children with their
schoolwork and inspire them to do their best while in school so they can succeed in the fu-

ture.

The children's home was seen by the caretakers as a family system that needed to be main-

tained and managed. This includes handling and keeping an eye on the health of the children

and giving medicine to those who require it, as well as organizing and managing the day-to-

day activities that involve their interactions with their families of origin and with other people

in the community. Additionally, caregivers are in charge of overseeing and planning the daily

schedules of the children under their care, including disciplining them as best they can.

Furthermore, the research by Razavi and Staab (2010) also showed that caregivers see them-

selves as the primary providers of support and nurturing for the children they look after. It is

reasonable to assume that the caregivers' realization that the majority of the vulnerable chil-

dren in their care may never get parental love, care, and nurturing is what motivates them to

love these children as if they were their own.

Hannah Jo Black (2018) conducted a study on caregivers to examine the

responsibilities of caregivers. Qualitative interviews were conducted with 35 caregivers

providing care for elderly relatives or individuals with disabilities. Caregivers were asked to

describe their typical daily activities and responsibilities in caring for their care recipient. The

key findings showed Caregivers reported taking on a diverse array of responsibilities,

including assistance with activities of daily living (bathing, dressing, feeding, etc.),

medication administration and coordination of healthcare services, helping with household

chores and maintenance, provision of financial assistance, and providing emotional support

and companionship for these individuals with disabilities and other health conditions.

Challenges experienced by caregivers of children with intellectual disability.

Caregiving for children with ID presents unique challenges, including emotional stress,

financial burdens, navigating healthcare systems, and addressing societal stigma. Support

systems, education, and access to resources are essential in alleviating caregiver burden and

promoting optimal caregiving practices.

Research conducted by Aneesh et al. (2022) on the topic “The Challenges faced by

Primary Caregivers of Children with Intellectual Disability” had 58 respondents in the study

This study interviewed the primary caregivers of children who were below the IQ of 70 who

were called children with intellectual disability. The sample size for the current study was

restricted to 58 respondents. The respondents were selected through convenience non

probability sampling method. Data was collected using the convenience sampling technique.

In Satara, Maharashtra, two non-governmental organizations provided 58 caregivers who

participated in the survey as respondents. undertaken in 2014 as a study. The study employed

the Zarit Burden Scale and the Caregiver Distress Scale, to assess the difficulties faced by

primary care providers. The study found that the respondents feel a moderate burden in

caring for these children with intellectual disability. The economic burden is higher than

other factors because the respondents were from poor or average income-generated families.

The study found that the caregivers were burdened in these five areas: health, financial,

relationship, psychological, and social life. Their study reported a statistically significant

(P=.000) positive moderate connection between the health burden and the psychological (r

=.642), financial (r =.530), and relationship (r =.480) difficulties. In these three areas, the

majority feel that their care is burdensome.

Moreover, Allan (2016) using purposive sampling selected 20 participants and by us-

ing the qualitative research approach explored the experiences of primary caregivers of chil-

dren living with disabilities. The findings of this research revealed that the caregivers experi-

enced financial challenges and a lack of psychosocial support from families. The study again
reported the importance of the caregiver’s health as a critical element in the caregiving

process as it has the caregiver’s health could affect the well-being of the child being cared

for. Due to the high physical labour demands and lack of specialized equipment that might

help them lessen their workload, primary caregivers in low-income nations have an extremely

difficult time providing care. Physical health issues and injuries could arise from this.

Research by Murphy et al. (2006) sampled forty caregivers and employed a focused

group discussion to assess the challenges they had encountered as caregivers of these children

with this developmental disability. From this work five themes encapsulated the experience

of providing care: the stress of providing care, the detrimental effect on the health of care-

givers, sharing the burden, concerns about the future, and coping mechanisms employed by

caregivers. Of the caregivers, 41% said that their health had gotten worse over the previous

year and blamed their diminished psychological vitality, lack of time, and lack of control for

these changes. The study showed the correlation positive correlation between most psycho-

logical conditions such as anxiety, stress and depression, and caregiving. In addition, Cherry

(1989) suggests another challenge faced by these caregivers is social isolation.

Strategies that support caregivers of children with intellectual disability.

Lazarus and Folkman (Citation1984) described coping as the strategies one uses to

deal with the causes of stressful occurrences. According to Lazarus and Folkman (1984), an

individual's coping techniques are significantly influenced by the personal meaning they as-

sign to situations. This meaning is typically shaped by their personal values, beliefs, and life

goals (Folkman & Moskowitz, 2000).

According to Murphy et al. (2006) , caregivers of children with disabilities used short

10- to 15-minute breaks, mini-naps, or the excuse "sometimes I just have a good cry" as ways

to escape their daily obligations. Having pets as companions, going shopping, and "eating

lots of chocolate" were common ways to unwind. In addition to noting that "a quick phone
call to a friend" was a useful way to decrease stress, caregivers placed a high value on the

support of friends, extended family, and peer organizations.

In addition, Jorge(2022) researched the common challenges caregivers face and dif-

ferent coping strategies. He did a purposive sampling of ten caregivers using the qualitative

approach. Through this study, he outlined a number of coping strategies as follows: getting

enough sleep, seeking medical attention, seeking help, and training from resource personnel.

Different coping strategies are used by primary caregivers of children with physical

limitations. The availability of social support and the primary caregiver's financial condition

play a crucial role in handling situations when the primary caregiver may turn to other people

as coping mechanisms. Nolan et al. (as referenced in Bailey and Savage, 2004). Concern has

been raised about how providing care affects caregivers' psychological well-being, sense of

self, and coping mechanisms. According to Nolan et al. (quoted in Savage and Bailey, 2004),

coping responses can be classified as coping resources or strategies. Nevertheless, the devel-

opment of social media sites where parents of kids with physical disabilities can exchange ex-

periences has shown to be a useful strategy for knowledge exchange and issue-solving in

When it comes to proposed intervention measures, children with severe intellectual

disabilities and their caretakers are likewise little represented (Razzouka et al. 2010).

Thus, a potential intervention model is put out to construct the collaborative intervention of a

child with severe intellectual disability based on this and the study's findings. According to

Stanbridge (2012), this paradigm incorporates counselling as the primary component of the

intervention and is essential to every level of Bronfenbrenner's bioecological systems model.

To improve the assistance given to the caregiver, a transdisciplinary team would entail each

healthcare professional taking on the role of a counsellor when it is suitable for them includ-

ing the educational psychologist (Costan et al. 2018).