Experiences of Parents as Caregivers for Children Diagnosed With Mild Intellectual Disability: An IPA Study

Abstract

The role of parents as informal primary caregivers for children with disabilities often emerges unexpectedly and reshapes family life in profound ways. Despite this significance, limited qualitative work has examined both mothers’ and fathers’ lived experiences in Pakistan. Guided by interpretative phenomenological analysis (IPA), this study explored how parents of children diagnosed with mild intellectual disability (MID) make sense of, live through, and cope with caregiving. Semi-structured interviews were conducted with three parental dyads. Analysis generated four interrelated superordinate themes: (a) From Parent to a Caregiver: Coming to terms with Child’s diagnosis and redefining parenthood; (b) Making sense of why: Faith, Fate and Responsibility; (c) Living the weight of care; (d) Holding on and holding together. This study highlights how sociocultural expectations shape gendered caregiving activities. Mothers primarily assume daily caregiving and emotional responsibilities, while fathers focus on family honor and access to educational or social opportunities. These findings highlight the need for culturally responsive and father-inclusive psychosocial support systems for families of children with MID. Although limited by a small, urban sample, the research contributes to a deeper understanding of how gender and culture influence parental meaning-making and caregiving practices in the context of MID.

Plain Language Summary

Parents’ Experiences of Caring for Children with Mild Intellectual Disability

This study looks at the experiences of both parents who care for children with Mild Intellectual Disability (Mild ID). We focused on Mild ID because it is more common in Pakistan and presents unique challenges compared to other developmental conditions. To understand parents’ experiences, we conducted semi-structured interviews and analyzed the responses using a method called Interpretative Phenomenological Analysis (IPA). The key themes that emerged included: How parents come to terms with their child’s diagnosis Their understanding of the condition How caregiving affects their daily lives The coping strategies they use to manage challenges Our findings confirmed what past research has shown but also provided new insights into the caregiving experience. Importantly, this study included fathers’ experiences, allowing us to compare their caregiving roles with those of mothers.

Keywords

mild intellectual disability caregiving experiences caregivers interpretative phenomenological analysis qualitative research parental caregiving experiences

Introduction

Caregiving is generally not seen as a choice but as a role that family members are expected to take on (Bookwala et al., 2000), often influenced by cultural, religious, and societal expectations. The caregiving role of parents with children who have developmental disabilities is particularly unique, as it begins at their child’s birth and continues throughout their lives (Emerson et al., 2012). This ongoing responsibility can create significant challenges, amplifying the burden of care they must shoulder (Christie et al., 2009). In this paper, we address the qualitative gap concerning mild intellectual disability (MID) and the relative neglect of fathers’ experiences, exploring how both parents manage daily care and the adjustments, entailed in their roles as informal, co-resident, and typically unpaid primary caregivers (Ranjan & Kiran, 2016).

Understanding the scope of mild intellectual disability requires clarity about its clinical and demographic profile. MID is characterized by impairments in both adaptive (social and practical skills necessary for daily living) and intellectual functioning, with an onset before the age of 18 (American Psychiatric Association, 2013). Among Individuals suffering from intellectual disability, 85% of them are diagnosed with MID. Globally, the prevalence of intellectual disability is reported to be two to eight times higher in low- and middle-income countries (Durkin, 2002). In particular, studies have reported that Pakistan has a notably high prevalence of MID, with a rate of 65.3 per 1,000 children and an incidence of 6.2% among children aged 6 to 10 (Durkin et al.,1998), being significantly higher than neighboring countries such as India (0.53%) and Bangladesh (1.44%; Fujiura et al., 2005). Furthermore, locally, the incidence of MID (6.5%) is three times higher than the more severe levels (1.9%; Durkin et al., 1994), with higher prevalence in males compared to females in Pakistan (Naz et al., 2021) and a concerning delay of 2.92 to 4.17 years between diagnosis and treatment (Mirza et al., 2009). Despite these indicators, the allocation of resources and attention to the impact of caregiving on family members remains limited leaving this population underserved (Mirza et al., 2009).

In Pakistan’s pronatalist and collectivist culture, children symbolize familial continuity, honor, and economic security (Qamar, 2018, 2022; Rathore et al., 2011). Sons in particular are viewed as future providers and extensions of the family’s public identity. When a child is diagnosed with a developmental condition, parents must renegotiate these expectations within a value system that gives more value to normalcy, obedience, and achievement. Such circumstances frequently trigger stigma both social and internalized as disability becomes associated with a perceived loss of face. Parents may therefore conceal the diagnosis or limit social interactions to protect family reputation, a response that often intensifies psychological strain and social isolation (Aftab et al., 2023; Agerskov et al., 2019; Amin et al., 2024; Azeem et al., 2013; Green, 2007; Mak & Cheung, 2008). Within this sociocultural context, caregiving is not merely a functional responsibility, but a process of identity management shaped by overlapping cultural, religious, and gendered expectations.

Existing research on caregiving for children with intellectual disabilities has predominantly centered on mothers, reflecting entrenched gender roles in family care. Most studies explore maternal stress, coping, and well-being (Chou et al., 2009; Crabtree, 2007a, 2007b; Dehnavi et al., 2011; Green, 2007; Mak & Cheung, 2008; Ntswane & Van Rhyn, 2007), while fathers’ perspectives remain comparatively overlooked. The limited studies that do include fathers report inconsistent findings: some suggest that fathers experience lower emotional impact and assume a pragmatic stance (Gerstein et al., 2009; Latif et al., 2025), whereas others highlight equal or greater stress levels and social withdrawal (Amin et al., 2024; Dabrowska & Pisula, 2010). This inconsistency underscores the need for qualitative exploration into how fathers construct meaning, negotiate stigma, and share caregiving responsibilities within patriarchal and collectivist family systems.

The caregiving experiences of parents of children with MID can be more deeply understood through the lens of stigma and coping theories. Drawing on Goffman’s (1963) conceptualization, as extended by Niedbalski (2021) and Green (2003), parents occupy a dual position as both witnesses and bearers of affiliate stigma transferred through association with their child. According to the Goffman, stigma can be discreditable or discredited, depending on the visibility of the stigmatizing characteristics. People in the former category, due to the concealability of their disability, can pass as normal by utilizing information control. These interactional strategies, however, operate within a wider socio-cultural setting shaped by structural disadvantages. As Thomas (2021) argues, stigma is embedded in systems of neoliberal-ableism, where caregivers face prolonged structural opposition. In the Pakistani context, such structural stigma is manifested through limited institutional support and cultural pressures that define good parenting as self-reliant and normative. To interpret these experiences holistically, this study draws on the Family Stress and Coping Model (Lazarus & Folkman, 1984). Within this framework, several factors are particularly relevant to understanding families of children with disability, such as the family’s appraisal of the event and the selection of the coping strategies informed by the evaluation of the situation.

Most of the previous research that was designed to explore caregiving caters to parent’s experiences of children with developmental disabilities without specifying these severity level (Agerskov et al., 2019; Chiu et al., 2014; Dehnavi et al., 2011; Gerstein et al., 2009; Iacob et al., 2020; Mak & Cheung, 2012; Tekola et al., 2020) despite acknowledging that the caregiving needs and challenges for a child with Mild ID are vastly different from children with moderate or severe severity levels. This generalization has obscured how parents respond when their child’s disability is partly concealed, socially negotiable, and accompanied by relatively higher expectations for independence. Moreover, MID is frequently misunderstood as “less serious,” yet parents face distinctive challenges due to the child’s ambiguous presentation where they functional enough to invite societal comparison but different enough to trigger stigma and self-doubt (Todd & Shearn, 1997). This research therefore focuses specifically on parents of children with MID to capture these subtle dynamics and to address the neglected intersection of visibility, stigma, and caregiving adaptation.

In addition, parental caregiving for children with neurodevelopmental disorders is primarily viewed through quantitative lens (Brehaut et al., 2011; Iacob et al., 2020; Olagunju et al., 2017; Reis et al., 2020; Shorey et al., 2021) which highlights the need to gain deeper qualitative insight especially from the caregivers of children mild intellectual disability owing to their unique challenges. The goal of this research is to obtain a thorough understanding of the caregiving experiences of both fathers and mothers, aiming to provide a holistic perspective on their caregiving system for their children.

Hence, guided by these considerations, the primary objective of this study is:

To explore parents’ lived experiences in managing daily care and adapting to the responsibilities of raising a child with mild intellectual disability.

The sub-objectives are:

To gain an in-depth understanding of how parents of children diagnosed with MID perceive and make sense of their caregiving experiences

To explore the ways in which these experiences impact their lives

To explore the sense-making and coping processes through which parents sustain their caregiving roles.

Methods

Participants

The study involved three married couples (n = 6), each comprising a mother and a father of a child diagnosed with mild intellectual disability. The sample size was consistent with the idiographic emphasis of interpretative phenomenological analysis (IPA), which prioritizes depth of engagement with each participant’s lived experience rather than generalization (Alase, 2017; Smith et al., 2021). This allowed the researchers to explore nuanced, contextually embedded meaning-making processes across and within couples.

Inclusion criteria required that participants (a) were biological parents serving as the primary caregivers of a child aged 6 to 10 years diagnosed with MID, signifying an age range at which diagnosis is most common in Pakistan (Bashir et al., 2002) and (b) had been engaged in primary caregiving responsibilities since the time of their child’s diagnosis. All participants lived in semi-urban areas of Pakistan and coincidentally, all had male children, and maternal ages at conception ranged from 41 to 44 years.

Participants were first approached via telephone and later interviewed at their homes in private settings of their choice. A pilot interview was conducted with one couple to refine the interview schedule; this couple’s data were excluded from the main analysis. All parents provided written informed consent, were assured of anonymity through pseudonyms, and were informed of their right to withdraw at any stage. Table 1 presents the demographic characteristics of the participating families.

Table 1.

Participants’ Characteristics.

Participants	Age	Gender	Age of children’s under consideration
A1	50	Female	9
B1	54	Male	9
A2	51	Female	7
B2	62	Male	7
A3	52	Female	9
B3	55	Male	9

Note. Alphabets signify the gender of the participants, that is, A = Mothers, B = Fathers and Number represents the no. assigned to the child that is A1 = Mother (Female) of the first child.

Research Design

This study employed an interpretative phenomenological analysis (IPA) design, which is grounded in phenomenology, hermeneutics, and idiography (Smith et al., 2021). IPA was chosen because it facilitates an in-depth exploration of how individuals make sense of their lived experiences which in our study involves the caregiving roles of parents of children diagnosed with mild intellectual disability. The approach aligns with the study’s objective of understanding the meaning-making processes through which parents interpret and adapt to their caregiving roles within their sociocultural context. The focus of IPA is interpretative rather than generalizable; therefore, the goal of this study was not to produce universal claims but to generate a rich, contextualized understanding of the participants’ lived experiences. The researcher adopted a reflexive stance throughout, recognizing that interpretation is co-constructed between the participants’ accounts and the researcher’s own engagement with the data.

Ethical Considerations

Ethical approval was obtained from the Institutional Research Ethics Committee of the host university (0839/Ethic/07/S3H/17/DBS). Written and verbal informed consent was obtained from all participants before both the pilot and main studies. They received detailed information about the study’s aims, procedures, potential risks and benefits, and their right to withdraw at any stage without penalty.

Permission for audio recording was sought, and confidentiality was ensured through the removal of identifying information. A referral protocol was established to provide psychological support if any emotional distress arises. The study adhered to the Declaration of Helsinki and the American Psychological Association’s (2017) Ethical Principles of Psychologists, ensuring that participants’ rights and well-being were prioritized.

Procedure

Data collection began following ethical clearance. Eligible participants were contacted, briefed on the study, and provided with an information sheet. Recruitment occurred between May 13 and June 3, 2020 for pilot and July 8 to August 17, 2020 for main study. A pilot interview with one couple was used to refine interview’s wording and sequence. However, the data collected from this pilot interview was not considered in the final analysis. Each participant completed a semi-structured interview lasting 60 to 90 min (Smith et al., 2021), conducted in their homes. Interviews were recorded with consent, and field notes were taken to capture nonverbal cues and contextual details.

Sample questions included: “Can you describe your understanding of Mild ID?”; “How did you feel when your child was diagnosed?”; “For how long have you been taking care of your child? How do you spend your time with your child during the day? How would you describe your experience of taking care of your child?”; and “How do you cope with caregiving demands?”

Data collection continued until rich accounts of parental experiences were gathered and no new insight was added. Field notes enriched the analysis. Participants opted out of transcript review, and all recordings were securely stored.

Data Analysis

Data was analyzed manually following the procedures outlined by Smith et al. (2021) for interpretative phenomenological analysis (IPA). Each transcript was read and re-read to facilitate immersion in the data, and initial exploratory comments which were primarily descriptive, linguistic, and conceptual were recorded in the margins to capture both explicit content and interpretative reflections. This process reflected IPA’s double hermeneutic, wherein participants made sense of their experiences, and the researchers tried to make sense of their meaning-making processes.

The initial notes guided the development of emergent themes that reflected both what participants said and how they said it, such as their tone, choice of words, metaphors, and pauses were treated as meaningful interpretative cues. These emergent themes were clustered within each case to form superordinate and subordinate themes. The researchers then examined patterns of convergence and divergence across all six interviews, engaging in an iterative process that moved back and forth between individual transcripts and the developing thematic structure, consistent with the hermeneutic circle.

Manual coding was employed throughout to maintain close interpretative contact with the text, supported by field notes and reflexive memos that documented contextual details and evolving researcher insights. These reflexive entries were revisited regularly to acknowledge preconceptions and to ensure interpretative transparency. To strengthen the study’s credibility and trustworthiness, the research team engaged in peer debriefing and analytic dialogues at each stage of interpretation. The final thematic map was cross-checked against the original transcripts to ensure the alignment with participants’ descriptions. Verbatim excerpts were used to anchor interpretative claims in participants’ voices, and a reflexive audit trail was maintained to document analytic decisions and interpretative shifts.

Results

The analysis generated four interconnected superordinate themes that portray how parents of children diagnosed with MID make sense of, negotiate, and adapt to their caregiving roles within Pakistan’s familial and cultural contexts. Guided by the principles of Interpretative Phenomenological Analysis, these findings reflect both the participants’ lived realities and the researchers’ interpretative engagement with their accounts but before delving deeper in to the results, it is pertinent to mention the children’s condition and the extent and intensity of their dependence on the parents.

The children under discussion are 7 to 9 years old and were diagnosed with mild intellectual disability in their early childhood and they experienced significant developmental delays especially in the domains of speech and cognitive development. As reported by the parents, their children were dependent on them for managing their daily needs requiring assistance with personal care such as eating, dressing, bathing, grooming, etc. At the same time, they reported incidents of behavioral outbursts. The parents shared the need for constant supervision due to their limited safety awareness. There was also an internal debate among the parents regarding the pursuance of their child’s academics as when enrolled in mainstream education system, they struggled but their condition is not severe enough to get an enrollment in Special Education system. Moreover, there was a shared perceived risk of modeling as well in presence of children with more severe symptomology. Also, another struggle that parents mentioned was lack of social support for their child. They were bullied by their peers, are isolated and require constant supervision if taken outside in order to avoid unpleasant circumstances. The parents struggled with keeping their guards on constantly for their child amid other responsibilities. This context is supplemented by the parents’ verbatim throughout the next section of the article (Table 2).

Table 2.

Summary of Emergent Themes.

Superordinate themes	Subordinate themes
From Parent to a Caregiver: Coming to terms with child’s diagnosis and redefining parenthood	Recognizing “Difference” through comparison and uncertainty
	Searching for clarity amid medicine, faith, and advice
	Receiving the diagnosis as an identity rupture
	Redefining the self from a Parent to a Caregiver
Making sense of why: Faith, Fate and Responsibility	Searching for cause between faith and science
Making sense of why: Faith, Fate and Responsibility	Carrying moral weight and Self Blame
Living the weight of care	Emotional Strain and Caregivers’ Identity
	Independence from a Dependent Child
	Social Relatedness and Protecting Honor
Holding on and holding together	Leaning on others Enduring through faith and spiritual framing
	Celebrating small victories: making peace by retelling the story
	Optimistic framing while living in circles

Theme 1: From Parent to a Caregiver: Coming to Terms With Child’s Diagnosis and Redefining Parenthood

The first theme captures the parents’ gradual reorientation from noticing “Difference” through comparison and uncertainty to internalizing a new caregiving identity.

As the data indicated, the process started when parentsrecognized “Difference” through comparison and uncertainty, noticing subtle delays such as speech or responsiveness as their child grew. These realizations emerged not only from clinical consultations but through everyday comparisons, often with siblings and peers.

I have three kids and all of them started doing stuff on their own at the age of 9 months … He however was a little slow in responses as compared to my other kids. (Father, 62 years old, Rawalpindi)

He is a little slow in understanding and doing stuff as compared to other children. His mental abilities are comparatively less as compared to children of his age. (Father, 55 years old, Rawalpindi)

These comparisons served as an early sign that prompted the parents to search for clarity amid medicine, faith, and advice oscillating between medical explanations and spiritual interpretations.

Eventually professional assessments confirm the diagnosis of Mild Intellectual Disability for their child. This marked what many parents experienced as an identity rupture which signified as a moment when their expectations of normal parenting gave way to uncertainty, disbelief, and emotional struggle. Across their narrative, the parents describe a desperate attempt to restore normality while slowly and gradually accepting a caregiving identity that felt both inevitable and unchosen. Their journey of redefining the self from a Parent to a Caregiver reflected experiencing desperation to find an answer to their child’s delays to avoidance toward acceptance of diagnosis and helplessness that came with it. The overall process is reflected in the statement shared by one of the mothers.

He was 4 years old, and he did not use to talk. We became worried. We would take him everywhere to different specialists in different hospitals. Anybody who would refer anyone, we would try that. We were desperate to find a cure, to make him better. We would even take him to Faith healers. God knows what not, we tried everything. Then we came across a doctor, and he asked us lots of questions and he diagnosed that his brain processes things slowly compared to other children of his age. And this news was very heavy for me to bear. (Mother, 50 years old, Rawalpindi)

Theme 2: Making Sense of Why: Faith, Fate and Responsibility

This theme explores how parents negotiated the question of “why” and how they tried to make sense of their child’s condition by moving between faith, fate and perceived responsibility. Their explanations include scientific reasoning with moral and spiritual worldviews reflecting a complex process of meaning making rather than a single cause.

Searching for Cause Between Faith and Science

Many parents began with biomedical explanations such as genetics or hereditary links drawing inferences from what they understood as “rational” or “socially valuated” knowledge. These explanations offered temporary relief by providing a tangible cause.

Genes can impact a lot. We have cousin marriage. Even our parents are siblings. One of our Maternal uncle’s sons also has the same condition as him. (Father, 55 years old, Rawalpindi)

However, these biomedical accounts often coexisted with spiritual and incorporeal frameworks of understanding. Parent also turned to religious beliefs, divine will and cultural notions such as the “evil eye” or “black magic.” This dual search for explanation reflects an integration of faith within their meaning making process where emotional suffering could be reframed through spiritual acceptance and culturally appropriate notions.

Someone told us about a faith healer, and he diagnosed that he is under the influence of intense Evil Eye and if we do not do anything about it, he is going to stay like this his whole life. (Mother, 51 years old, Rawalpindi)

This is God’s will, and it is a test for us. (Mother, 50 years old, Rawalpindi)

Carrying Moral Weight and Self-Blame

For some parents, the act of making sense also became a moral retribution. They internalized responsibility, linking their child’s diagnosis to their own moral or behavioral shortcomings.

Everybody would call him the prettiest of all my kids. I was not very much aware of such things. I should have been very careful while making him wear pretty clothes so that evil eye could have stayed away from him. (Mother, 51 years old, Rawalpindi)

Across these accounts, parents’ explanations of “why” reflected not a confusion but a culturally coherent form of sense-making. It was an attempt to situate a disruptive diagnosis within familiar systems of culturally acceptable beliefs. This intersection of science and faith enabled them to tolerate uncertainty while retaining a sense of order, hope and autonomy.

Theme 3: Living the Weight of Care

This superordinate theme captures how caregiving, for parents of children diagnosed with mild intellectual disability, is experiences as an unescapable life condition rather than a discrete role. The parents’ accounts illustrate how caregiving is experienced, internalized, and socially navigated, and how it transforms their sense of self, reorganizes daily life, and redefines their social relationships. Across the subthemes discussed below, the analysis explores how caregiving is lived as both a source of meaning and enduring weight, impacted by cultural expectations, familial duty, and faith.

Emotional Strain and Caregivers’ Identity

Grief was evident in parent’s reports (prominently stated by mothers) where they were ruminating over their old selves and its loss because of their caregiving experiences on three levels that is cognitive, emotional, and behavioral with the resultant manifestations in the form of physiological symptoms.

Their overthinking was observed to be centered on themselves (especially mothers) where their reflections often circled back to who they “used to be”, and a regret associated with how caregiving gradually took over their now diminished interest in self-care and activities that once tied to their identity. Over time, attention once given to self-grooming or leisure shifted toward vigilance and responsibility, marking a quiet acceptance of a self now defined through caregiving.

I used to be so pretty. People who see my pictures cannot believe if it is me or someone else. I am not the same person anymore because of him. (Mother, 50 years old, Rawalpindi)

I am continuously worried about him; this is who I am now. I don’t know what I will do or who I will be if I don’t have to take care of him. (Mother, 51 years old, Rawalpindi)

Some expressions reveal not only emotional fatigue but also a deep vulnerability, as parents struggled to articulate distress that was both personal and relational.

What can we do? Life is continuously orbiting around him. What else can one do? (Mother, 52 years old, Rawalpindi)

Many parents carried retrospective guilt, wondering if earlier intervention might have changed their child’s trajectory:

We keep on thinking, had we gone to the doctor a little earlier, we could have found out and he might have been different. (Father, 55 years old, Rawalpindi)

Feelings of guilt often led to compensatory behaviors where parents described being more lenient or indulgent with the child with Mild ID, sometimes at the expense of their other children.

If our other kids behave like him, we scold them, but we have to be extra lenient with him because of his condition. (Father, 55 years old, Rawalpindi)

For several mothers, this guilt was lived physically through hypertension, fatigue, and restless nights:

That’s how it is now. I am stressed all the time; my health is also gone, my blood pressure also gets high. (Mother, 51 years old, Rawalpindi)

Independence From a Dependent Child

This subtheme captures parents’ ongoing struggle to balance care and autonomy, highlighting an emotional paradox. While caregiving was rooted in deep attachment, parents also described a yearning for personal and emotional space, revealing how dependence reshaped both their routines and their sense of self. For many, daily caregiving was marked by unpredictability due to behavioral outbursts and constant dependence that left them feeling trapped between vigilance and helplessness.

He shouts, if we do not listen to him, he would start screaming. And when he gets angry, nobody can control him. (Father, 62 years old, Rawalpindi)

I have to take care of everything from eating, dressing or even taking him to the washroom. Also changing his dress. He needs my assistance in everything. (Mother, 50 years old, Rawalpindi)

The absence of support amplified this dependence, with little opportunity for respite or self-renewal.

I try my best, not to go outside, and stay with him all the time. I must take care of him when I am outside with him as well. I have no other support. (Mother, 52 years old, Rawalpindi)

Many described this confinement as both an act of devotion and a quiet form of self-erosion, where the caregiver’s identity blurred into the child’s needs. There was also a hint of frustration in their expression when they talked about their caregiving responsibilities.

There is no time to rest, I am worried about him all the time. I am even scared of leaving him alone for a while, so I must be around him all the time. I get no time to rest at all. (Mother, 50 years old, Rawalpindi)

Yet beneath this fatigue, one could see relentless hope. Parents described a tireless search for solutions, be it medical, spiritual, or alternative, to reclaim agency, presumably making their child less dependent on them and more independent.

We are in continuous search to try anything for him. Anybody who would refer to anything we would try that. It’s always on our mind, finding something that can benefit him, and he would become alright and start taking care of himself. (Father, 55 years old, Rawalpindi)

The most profound anxiety emerged around their child’s future where they were worried about who would care for him when they were gone.

Right now, we are trying everything in our might to take care of him. But the thought of us not being around him scares us. This is a continuous thought, who is going to take care of him after us?. (Father, 54 years old, Rawalpindi)

Moreover, parents also shared their expectations where they wanted their child to be like other children and to be able to take care of himself and outgrow his dependence. This also reflected their longing for normalcy and belonging to their child

I just want him to be like his siblings, the way their brains are. I wish that he studies and grow like them, he could handle himself, take care of himself and is not dependent on anyone. (Mother, 52 years old, Rawalpindi)

Although mothers did share the concern, fathers primarily complained about the lack of resources and a non-inclusive environment in school and considered it as one of the primary challenges.

We cannot send them to schools for special children, obviously because he is not abnormal. He is like other kids but just a little behind. And on the other side in regular school, teachers are unable to figure out how to take care of or handle these kids. I am extremely disappointed with the system here. They should be able to accommodate him. … we keep on looking for a good school where he could go but we are unable to find a good option. (Father, 55 years old, Rawalpindi)

This can be interpreted considering the situational factors involved in caregiving responsibilities. As mothers were responsible for taking care of the child’s primary physiological needs and were in direct contact with him for most of their day, their expectations revolved primarily around the child’s independence in his basic physiological needs although they did worry about his schooling as well. However, for fathers, their perception of caregiving primarily centered around their child’s progression from a societal lens, such as his admission to a normative school system. This could be due to their increased interactions and involvement with the outside world where elements of protecting their honor and face saving are at play but the longing for independence from their dependent child was evident in their responses.

Social Relatedness and Protecting Honor

This subtheme reflects how parents negotiated their social worlds under the weight of affiliate stigma where they felt being judged, blamed, and discriminated against because of their child’s difference. Within close-knit social structures, parents’ moral and social status was assessed by their child’s public conduct, accentuating the relational pressures in their sociocultural context.

People would say, our kids do not behave like this. He is spoiled and ill-mannered. (Father, 55 years old, Rawalpindi)

Parents described frequent criticism from neighbors and relatives, who viewed their child’s behavior as evidence of poor upbringing:

People would look at him strangely as if there is something wrong with him, although he is dressed up properly and is more well-kempt than other kids. (Father, 62 years old, Rawalpindi).

For mothers, this gaze extended into public spaces, where their children were ridiculed or excluded

Kids beat him, bully him and they would not let him play with them. (Mother, 51 years old, Rawalpindi)

Such encounters turned everyday social interactions into fear of exposure, reinforcing parents’ awareness that their child’s visibility threatened the family’s reputation.

In these moments of judgment, disability was not seen as a medical condition but as a moral commentary. Parents were blamed for “poor parenting” or even divine punishment:

People would question our parenting. They would comment that we did not pay attention to him. (Father, 55 years old, Rawalpindi)

A lot of people would also comment that this is some punishment from the God. You should seek forgiveness. (Father, 54 years old, Rawalpindi)

In the light of these experiences, there was an effort toward protecting honor which at times aggravated their emotions when their vulnerability related to their child is remarked on by the society. Mothers often described community concern as “pretend sympathy” highlighting gestures that masqueraded as care but reinforced their sense of inadequacy:

She (a female relative) started saying, My God what happened to him? Didn’t you get him properly checked up? People would never ask how we are. They would just keep on talking about the same thing. (Mother, 52 years old, Rawalpindi)

To preserve social respectability, some parents managed their child’s visibility with great caution, limiting exposure to outsiders or investing in appearance as a defense against judgment.

If any outsider visits us, I try my best that he does not have to face them. (Father, 62 years old, Rawalpindi)

We try our best to provide him better than his other siblings. His clothes are always more expensive. We try our best that he looks visually more appealing and well-kempt. (Father, 62 years old, Rawalpindi)

Moreover, it extended beyond the wellbeing of the child to self-presentation of parents in society to sustain their dignity and reputation.

I retired as a government school principal, if my kid lags in academics, it would be a great shame for me. (Father, 62 years old, Rawalpindi)

In response to judgment, most parents internalized blame, turning inward rather than confronting others,

Most of the time we stay quiet. What can we say? We do realize there is a shortcoming at our end, but people would still comment. (Mother, 51 years old, Rawalpindi)

Many found refuge in faith interpreting their trials as part of a divine plan.

I keep on listening and crying and then I would embrace it as this is from God and I accept it. There must be a bigger plan to this. (Mother, 50 years old, Rawalpindi)

Parental responsibility was intertwined with heightened vigilance and an enduring anxiety over potential public scrutiny, underscoring the emotional burden of caregiving in socially evaluative contexts.

My relatives talk about it. They get frustrated because of him. I stay extra cautious for him. We have to face people as well and they are just looking for opportunities. (Mother, 50 years old, Rawalpindi)

The consequences of their longing for protecting honor were controlling the child’s visibility. Parents described restricting their children’s independence, allowing only closely supervised social interactions to avoid public embarrassment.

The whole day I keep an eye on him. I try my best to make sure that wherever I go, he is with me. I do not allow him to go alone anywhere. (Mother, 51 years old, Rawalpindi.)

When confronted by others’ remarks, parents alternated between withdrawal and defiance, the two sides of the same struggle to preserve dignity.

We left our family home after striving a lot, so we do not have to face them. We try to stay away as much as possible. (Mother, 50 years old, Rawalpindi)

I replied what do you mean what’s wrong with him? He is my kid; does he have some kind of defect? Is he blind or what? By God, I lost it I cannot even explain how angry I was. (Mother, 50 years old, Rawalpindi)

Theme 4: Holding On and Holding Together

This final superordinate theme captures how parents sustained themselves amid their caregiving responsibilities. Across narratives, parents described reaching out to others, leaning on faith, reframing hardship through gratitude, and retelling their story in ways that allowed them to endure and continue caregiving. Together, these accounts reflect an ongoing process of emotional repair of holding on to hope while holding their families together.

Leaning on Others

Parents described drawing strength from layered forms of support that helped them sustain their caregiving. Emotional support from spouses, children, and siblings offered reassurance and normalized their experiences.

My family, especially my husband and my children help me a lot when I am feeling down or losing hope. They help me keep going, I talk to them about my emotions. I can talk to my sisters too, it helps. (Mother, 50 years old, Rawalpindi)

Alongside emotional closeness, practical help such as assistance with childcare or household chores provided momentary relief and strengthened familial bonds.

In this regard, all my siblings also love him a lot. They would even take care of him if I was not around. He was sick some time ago, they would help me with house chores as well. (Mother, 52 years old, Rawalpindi)

Information and advice from teachers or peers who shared similar experiences opened potential pathways for action.

His teacher would say his drawing skills are great. Teach him how to play and play with him. There was a girl in our village who had the same case with his kid, she told us about a hospital, and she would take her own child there. So, we also took him there. (Father, 54 years old, Rawalpindi)

Yet, this leaning on others coexisted with guarded boundaries. When it came to distant relatives or acquaintances, parents preferred silence or concealment, fearing gossip or judgment. Thus, support was both sought and contained offered only within circles of trust.

Enduring Through Faith and Spiritual Framing

For many parents, faith in God was the anchor that allowed them to endure caregiving’s emotional weight. It offered both explanation and acceptance, transforming what felt unbearable into something spiritually meaningful.

As one father simply expressed “It’s God’s will” (Father, 60 years old, Rawalpindi).

Prayer emerged as an everyday ritual that sustained their emotional energy and offered continuity amid chaos.

I would keep on praying to God, that somehow, he gets better. Somehow, he becomes like my other son. This helps me keep going. (Mother, 50 years old, Rawalpindi)

Through the spiritual framing, parents located their struggles within a moral and religious narrative seeing caregiving as a divine test or sacred duty.

Celebrating Small Victories: Making Peace by Retelling the Story

Another way parents sustained themselves was by retelling their story in gentler, more hopeful terms. Many reinterpreted their child’s condition as a blessing in disguise, emphasizing strengths and small victories to soften the emotional weight of caregiving.

He helps us a lot with different chores, which a normal kid cannot. Sometimes I feel it is not his problem, his brain is extra smart and nothing else. (Father, 54 years old, Rawalpindi)

This reinterpretation was often intertwined with faith. Many believed that complaining about their child’s condition would signify ingratitude toward God. To preserve their moral sense of thankfulness, they reframed their struggles as signs of divine testing or strength.

Some parents also used selective retelling to shield themselves from emotional pain downplaying difficulties and focusing instead on moments of normalcy or pride.

I was worried in the beginning. We did not even believe there was some shortcoming. You can see how active he is. He listens to us and can do everything. He is no trouble to us at all. (Mother, 50 years old, Rawalpindi)

Through these small acts of reinterpretation, parents appeared to reconstruct their emotional world, making caregiving feel less like suffering and more like purpose.

Optimistic Framing While Living in Circles

A recurring pattern in parents’ narratives was a gentle, enduring optimism which was a way of keeping faith by comparing their child’s progress with others facing greater challenges. These downward comparisons did not deny hardship but helped them regain perspective and emotional balance.

When we used to visit the hospital, By God my son was better than all the other kids there. Some kids would have limping legs or bigger heads etc. (Mother, 50 years old, Rawalpindi)

Gratitude for small abilities and moments of normalcy became an emotional anchor. Parents emphasized their child’s skills and physical health as reminders that life, though altered, still held goodness.

He would do everything that he was told to do. His drawing is very good. (Father, 55 years old, Rawalpindi)

I am thankful to God; he is not physically challenged. (Mother, 50 years old, Rawalpindi)

Within the cultural context, gratitude was also filtered through gendered expectations. Parents shared how they are grateful for having a male child with this condition as they emphasized on how having a female child with these challenges would have multifold their challenges.

Whenever I think about him, I feel this relief that he is my son, a boy. Had it been my daughter, it would have been extremely difficult. (Mother, 51 years old, Rawalpindi)

This optimism also cycled through their ongoing faith in gradual improvement, sustained by reassurance from doctors.

He will handle himself when he grows old. The doctors also said this, his brain is smaller in age, but when he grows, he should be able to take care of himself. (Father, 62 years old, Rawalpindi)

Through this continual reframing, parents appeared to live within circles of hope and acceptance oscillating between acknowledging limits and imagining potential recovery.

Comparison of Caregiving Experiences Between Fathers and Mothers as Primary Caregivers

This section interprets the gendered dimensions of caregiving among mothers and fathers of children with mild intellectual disability, extending preceding themes to show how both construct and live their caregiving identities within shared sociocultural expectations. Supporting quotations have already been presented in the previous sections. This section integrates interpretative differences to explore how parents construct meaning, cope with challenges, and navigate their social worlds.

Mothers experienced the diagnosis as an emotional rupture that disrupted their sense of self. Their first reactions were shock and helplessness, often manifesting as crying spells, overthinking, and gradual movement toward acceptance. Distress was frequently embodied through fatigue and psychosomatic symptoms, reflecting the intimate nature of their caregiving role. Fathers, meanwhile, initially denied the diagnosis, and their distress stemmed from fear of social embarrassment and anticipatory shame.

Both parents recognized “difference” through observation and comparison with siblings and peers, yet their interpretative frames diverged. Fathers drew primarily on biomedical reasoning, linking the condition to genetics or familial causes. Mothers combined medical explanations with incorporeal beliefs such as black magic and the evil eye, turning to alternate healers for healing.

Caregiving burdens were heavier for mothers due to longer hours and continuous engagement with the child’s needs. Mothers voiced exhaustion, helplessness, and a sense of losing their former identity, while fathers reported frustration and disappointment over limited institutional support. Fathers’ caregiving concerns centered on behavioral control and educational inclusion; mothers’ challenges encompassed daily caregiving, hygiene, and emotional fatigue.

Both parents exhibited overthinking and worry but differed in focus. Mothers’ anxieties revolved around the child’s dependence, but fathers’ concerns targeted structural inadequacies in education and services. Fathers prioritized formal schooling and social integration, while mothers emphasized developing functional independence and autonomy. In different ways, both sought freedom from the child’s dependence with mothers through fostering self-care and fathers through societal inclusion.

Stigma and experiencing altered treatment from society were discussed by both, however, for fathers stigma was anticipatory, but it was intensely experienced by mothers. They encountered direct criticism and “pretend sympathy,” often being blamed for their child’s condition. Fathers, fearing reputational harm, rationalized discriminatory remarks and controlled their child’s exposure to public spaces. Stigma thus operated along gendered lines: for mothers as moral blame, for fathers as a threat to their reputation. Both engaged in face-saving strategies with mothers through quiet endurance or defensiveness and fathers through avoidance and rationalization by attributing the society’s altered treatment to their lack of understanding.

Coping mechanisms similarly followed gendered pathways. Fathers accessed more instrumental support and minimized caregiving challenges through rationalization and problem-focused efforts, restoring a sense of agency. Mothers relied on emotional and spiritual support from close family, using prayer and gratitude to sustain meaning. Faith allowed them to reframe suffering as moral endurance, while favorable comparisons with children with more severe disabilities reinforced hope. Both parents used optimistic framing where mothers were grateful for their child’s relative well-being and fathers were emphasizing potential future improvement based on professional reassurance.

Taken together, the contrasts between mothers and fathers reveal how caregiving is filtered through culturally embedded gender roles. While both parents navigate the similar experience, their meaning-making and coping diverge in form and expression. Both, however, share a common longing for their child’s independence and a commitment to “hold on and hold together,” demonstrating parallel yet distinctly gendered pathways of resilience within a shared familial and cultural landscape.

Discussion

This study sought to explore how parents of children with mild intellectual disability made sense of their caregiving roles, how these experiences reshaped their lives, and the coping strategies that sustained them. Following interpretative phenomenological analysis (IPA), the discussion interprets these experiences as dynamic meaning-making processes situated within their sociocultural settings.

Parents’ accounts revealed a hybrid understanding of MID, rooted in both biomedical and spiritual belief systems. While several parents acknowledged medical explanations such as genetics or developmental delays, these coexisted with theological and supernatural explanations, including divine will, retribution for past transgressions, or the effects of black magic and the evil eye. This coexistence of explanatory models reflects an attempt to regain control and stability in the face of uncertainty by translating a clinical diagnosis into a culturally informed narrative. Similar meaning-making dualities have been observed across other collectivist contexts such as Ethiopia, India, and Tanzania (Aldersey, 2012; Hervie, 2023; Jegatheesan et al., 2010; Kaur, 2016; Kisanji, 1995; Mulatu, 1999), reflecting that parents’ interpretations of disability often comprise of both scientific reasoning and metaphysical understanding rather than favoring one viewpoint over the other.

Mothers, in particular, were observed to construct theological explanations to make sense of their child’s condition, while also acknowledging biomedical causes. References to “God’s will,” divine punishment, or transgression functioned as interpretive tools through which parents reconciled the diagnosis with their faith and their caregiving role for children with intellectual disability.

Similar findings have been observed across contexts where faith-based explanations coexist with biomedical reasoning (Avoke, 2002; Cardinali et al., 2019; Mak & Kwok, 2010).

Adapting to the caregiving role emerged not merely as a practical adjustment but as a profound existential reorientation. Parents’ lives were reshaped across emotional, social, and bodily domains, with many describing fatigue, disrupted routines, and emotional struggles, as they adjusted to their child’s diagnosis. This echoes existing findings on the pervasive impact of caregiving on parents’ physical and psychological well-being (Matteucci et al., 2019; Spindler et al., 2017).

The transition was described as a journey through distress, denial, and gradual acceptance, bearing similarities to bereavement. In the Pakistani context, this grief is intertwined with the cultural expectation of the agentic child who is envisioned as an active contributor to family honor and future security (Qamar, 2022). The diagnosis of MID therefore signified not only developmental limitations but also the loss of this imagined trajectory of autonomy and productivity. Fathers often articulated this loss through frustration and the question “Why me?,” while mothers narrated it as enduring sorrow and embodied fatigue. These emotions align with stage-based theories of adjustment to disability (Goldstein & Kenet, 2002) and have been documented as prolonged grief in mothers across cultural settings (Sheehan & Guerin, 2018).

Beyond grief for their child, parents also grieved the loss of their former selves. Mothers, in particular, described caregiving as an all-encompassing experience that blurred the boundaries between self and role.

This transformation is characterized by exhaustion, sleeplessness, and somatic complaints. Such embodied experiences mirror findings that caregiving challenges can reconfigure one’s sense of self and well-being (De Piccoli, 2015; Spindler et al., 2017).

Fathers spoke more about systemic challenges and the lack of resources or support structures. These gendered differences reflect the culturally shared expectations that position women as primary custodians of care, responsible for emotional and physical labor, while men are responsible for their family’s social standing (De Piccoli, 2015).

In response to the caregiving responsibilities, parents expressed a longing for “independence from a dependent child.” Both mothers and fathers articulated this yearning, mothers through the hope that their child would one day manage his own basic needs, and fathers through their aspirations for his social acceptance and educational inclusion. Within the Pakistani context, where the child is culturally imagined as agentic and socially productive (Qamar, 2021), a diagnosis of MID represents a rupture in this expected trajectory. Parents’ distress thus stems not only from the child’s limitations but from the disruption of a social order in which adulthood is equated with competence and contribution.

The inability of their child to conform to these ideals reinforced the sense of loss and incompleteness. The notion of the “incomplete child” (Schraube & Osterkamp, 2013) becomes particularly salient here which discusses the child who remains perpetually in the state of “becoming” but never “arrives.” Fathers’ emphasis on academic and social advancement can be understood as an attempt to restore this imagined completeness, while mothers’ focus on functional independence reflects a pragmatic, care-centered response to daily realities. These findings align with prior work on gendered caregiving priorities (Fernández-Alcántara, 2017; Griffith & Hastings, 2014; Heiman & Berger, 2008; Somanadhan & Larkin, 2016; Taggart et al., 2012; Yoong & Koritsas, 2012).

Interpreted through Goffman’s (1963) framework of stigma and face saving, fathers’ preoccupation with societal inclusion can be seen as an effort to preserve the family’s image and reputation within a collectivist honor culture. Mothers’ narratives, on the other hand, reveal the embodied cost of maintaining this caregiving front. Together, these perspectives reflect caregiving not merely as a burden but as a gendered practice situated in the midst of faith, honor, and social connectedness.

Within the social world of parents, disability was not merely a biomedical label but a judgment that challenged their reputation and dignity. In public spaces, their child’s behaviors were interpreted through the lens of social deviance and evidence of poor parenting and divine punishment. These perceptions initiated what Goffman (1963) described as a spoiled identity, prompting parents to engage in continual acts of repair to reclaim the lost reputation. Mothers, in particular, reported being the primary target of criticism and unwelcome sympathy, whereas fathers stated concern that their child’s visibility might compromise the family’s collective honor.

Parents’ responses revealed hypervigilance in social settings, constantly monitoring their child to prevent public embarrassment. Such strategies of avoidance, selective disclosure, and impression management represented acts through which parents sought to protect both their child’s dignity and their own social standing. These experiences align with Mak and Kwok’s (2010) concept of affiliate stigma, in which self-blame and shame are internalized through social interaction. Moreover, these findings showed how this process is deeply shaped by the cultural notions of honor and reputation. Protecting honor was not simply about saving face but preserving belonging within a collectivist society. Similar to the findings of Mirza et al. (2009) and Ntswane and Van Rhyn (2007), this study shows that both fathers and mothers share this social vigilance, though presented differently that is for mothers through quiet withdrawal and for fathers through controlled and supervised interactions.

Parents reported drawing strength from immediate family members and close relatives, finding both emotional and instrumental forms of support that softened the weight of caregiving. This shared caregiving, often involving siblings, helped reduce the caregiving burden, as supported by the literature (Lamb et al., 2016; Luijkx et al., 2017; Moyson & Roeyers, 2012). Unlike prior studies where parents of children with intellectual disability described isolation and marital strain (Boehm et al., 2015; Dyson, 2010; Marchal et al., 2016), participants in this study experienced family involvement as a sustaining force.

Some other coping responses involved parents minimizing their child’s limitations or idealizing their abilities as a form of self-protection. Such reaction formations and acts of denial, can be understood as culturally adaptive strategies aimed at preserving hope and defending family honor. Optimistic framing served as another vital coping process. Parents frequently compared their child favorably to others with more severe conditions, expressing gratitude to God for his physical health or his “better” symptoms. This comparative optimism functioned as a form of positive reappraisal of their child disability (Ha et al., 2011). Such responses also align with Pargament’s (1997) model of religious coping, where spiritual frameworks help individuals transform distress into endurance. Moreover, the literature corroborates that parents might find solacement through giving spiritual meaning to their caregiving struggles (Aldersey, 2012; Allen & Marshall, 2010; Durà-Vilà et al., 2010; O’Hara & Bouras, 2007).

The caregiving dynamic revealed a family system in which both parents contributed different but complementary forms of care. Mothers anchored the emotional and physical labor of caregiving, while fathers engaged through provision and protection of family honor. While caregiving has traditionally been tied to women’s identity (Cardinali et al., 2019), this study illuminates how fathers, too, experience profound emotional labor and social negotiation within their caregiving roles. By exploring these intertwined experiences, the study expands understanding of caregiving in MID and fills an important empirical and interpretive gap in South Asian contexts.

Limitations and Future Implications

While this study provides a comprehensive understanding of the lived experiences of parents of children diagnosed with mild intellectual disability, several limitations must be acknowledged. The study explored parental experiences at a single point in time, when several years had passed since the child’s diagnosis. Literature suggests that parental perceptions and emotions evolve over time; therefore, a longitudinal design following families across different developmental stages of their children could yield deeper insight into temporal changes in meaning-making and coping. Coincidentally, all children in the current sample were male, which may reflect the higher prevalence of mild intellectual disability among boys, as reported in existing data.

However, several mothers expressed concern about the different challenges they might have faced if their child with this diagnosis were a daughter, underscoring the need for future research involving parents of girls with intellectual disability to better understand gender-related caregiving experiences. Participants also expressed their gratitude for the absence of physical disability in their children, suggesting that societal perceptions of visible versus invisible disabilities may influence parental adjustment which warrants further exploration. Future studies could evaluate the effectiveness of psychoeducational and counseling interventions aimed at reducing parental distress and strengthening adaptive coping. Moreover, it is suggested that development of integrated rehabilitative, educational, and medical programs aimed at promoting autonomy among individuals with mild intellectual disability be prioritized in policy development.

Conclusion

Parents of children with mild intellectual disability in Pakistan undergo a complex journey from initial shock to the development of coping strategies and identity reconstruction, shaped by sociocultural expectations and family dynamics. Mothers primarily carried day-to-day caregiving and emotional responsibilities, while fathers focused on family honor and access to educational or social opportunities. These patterns highlight the need for culturally attuned interventions that involve both parents. Particularly, father-inclusive support programs, inclusive teacher training, and cultural appropriate community-based counseling can positively impact family resilience. These findings highlight the importance of policy initiatives that prioritize psychoeducation, respite care, and skill-building programs to address families’ concern about the autonomy of their children. Additionally, research involving parents of girls with intellectual disability is encouraged to gain a thorough understanding of gender-specific caregiving experiences.

Footnotes

Author Note

The authors confirm that this manuscript adheres to Sage Open’s guidelines for authorship, ethical compliance, and data transparency.

ORCID iD

Sumbal Nawaz

Ethical Considerations

This study was approved by the Research Ethics Committee S3H under protocol number [0839/Ethic/07/S3H/17/DBS] before the data collection was commenced.

Consent to Participate

Written informed consent was obtained from all participants prior to data collection.

Consent for Publication

Written informed consent was obtained from all relevant participants which included consent for publication while maintaining the anonymity.

Author Contributions

First author contributed to study design, data collection, data analysis and writing of manuscript. Second author was involved in study design, data analysis and review of manuscript. All authors reviewed and approved the final version.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability Statement

The datasets used and analyzed during the current study are available from the corresponding author upon request. Moreover, they have been uploaded on Qualitative Data Repository as well.

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