Emotional Trauma in Parental Involvement in Transitioning Learners with Intellectual Disabilities from Mainstream to Special Schools

Abstract

Disability is associated with negativity, discrimination, shame, and stigma in townships, which impacts how parents interpret it when their child has a disability. Parents who have recently learned of their children’s intellectual disability often experience psychological and emotional trauma due to uncertainty and lack of knowledge and understanding of intellectual disabilities, including a lack of formalized and policy-supported transition programs in South Africa. Guided by Barbara Mowder’s Parent Development Theory, this study aimed to explore parents’ understanding of their role in transitioning learners with intellectual disabilities from mainstream to special schools. Using a qualitative case study, semi-structured interviews were conducted with eight purposively sampled participants from one chosen mainstream primary school in Soweto, Gauteng Province, South Africa. The results of the current study confirmed that the meanings participants attribute to their parent role characteristics during the transitioning of their children with intellectual disabilities are influenced by the connection between the Parent Development Theory’s parent role perceptions and the participants’ individual factors, including their educational background levels, which made a major contribution to how these parents perceived their parental role and their understanding of intellectual disabilities. The results highlight that owing to parents’ educational levels and cultural aspects, identifying learners with intellectual disabilities can be particularly challenging, with overwhelming, mixed emotions. The provision of psychosocial services in mainstream schools, as well as teacher training in skills to address the overwhelming parental support needs, will benefit parents and their intellectually disabled children by facilitating therapy and counseling during the transition process to overcome psychological challenges.

1. Introduction

Parents who have disabled children are frequently despised and rejected by their families and communities [1]. For these parents, the sudden realization of their children’s intellectual disability and the transition from mainstream to special schools are often coupled with emotional and psychological trauma when parents begin to comprehend the long-term implications of their child’s diagnosis [2,3,4,5]. Parents of children with intellectual disabilities frequently feel awkward discussing it and are hesitant to admit that their children have an intellectual disability because of the continued patriarchy and discrimination in South African society [6].

Intellectual disability is a lifelong condition with an estimated prevalence rate of 1–3% of the global population [7]. However, Chaturvedi [8] discovered that data on the global intellectual disability population is limited and at times unreliable, which is complicated and influenced by a variety of factors, such as poor recognition of individuals with intellectual disabilities, educational levels, cultural aspects, and socio-environmental factors, which may affect intellectual disability recognition and identification. Despite a severe lack of reliable information on the nature and prevalence of intellectual disability globally, McKenzie et al. [9] and Chauke et al. [10] suggest that the overall prevalence rate of intellectual disability in South Africa could be 3.6%, implying that South Africa has a higher prevalence of intellectual disabilities than developed countries. The Gauteng Education Department statistical report highlighted that in 2021, there were 2,671,184 learners enrolled in public ordinary schools, with 63,985 of those learners attending special schools, reflecting an increase in learner numbers from 47,769 learners over the previous five years [11]. Meanwhile, 5831 learners were presently enrolled in Soweto’s 13 public special schools for learners with disabilities [11]. Despite the increasing number of learners with intellectual disabilities in mainstream schools, culture and the effects of apartheid continue to have an impact on how parents perceive their role and interact with learners with intellectual disabilities [6]. Therefore, it is worth noting that the prevalence of intellectual disabilities is often overlooked, and diagnosis is usually made at a later age; subsequently, parents hardly receive timely information about their children’s conditions [8]. Parents demonstrate limited understanding, information, and knowledge about the nature and implications of intellectual disability [3].

Intellectual disability has a prehistorical origin that can be traced back to the Greek and Roman eras [12,13]. Historic intellectual disability definitions were based solely on intelligence, with an emphasis on routine care and maintenance rather than treatment and care [12]. Subsequently, individuals who were slow to learn and immature were therefore referred to as idiots or morons [12]. Similarly, McKenzie et al. [9] argued in their study that South Africa’s colonial period appeared consistent with other countries in terms of classifying people with intellectual disabilities as mentally deficient, with three categories to describe their reduced intellectual and functional abilities: “idiot”, “imbecile”, and “feeble-minded.” Throughout history, there have been changes in diagnostic criteria and variations in the occurrence of intellectual disabilities [7]. It was in 2005 that the term “intellectual disability” was formalized to identify individuals who meet the standards of mental deficiency and demonstrate evidence of reduced development and functioning in the community [14,15].

Learners with intellectual disabilities can learn and are unique in terms of their needs; however, these learners progress slowly when compared to peers and struggle with abstract thought, making them less capable of learning on the spur of the moment and unable to apply what they learn in new situations and cope independently, which subsequently play a far more minor role in their development than learners with average intelligence [8,16,17]. Hence, their learning differences necessitate appropriate parental attention and support to encourage learning progress [12,16]. Considering that learners with intellectual disabilities require more support in adaptive behavior and reasoning than their peers without intellectual disabilities [1,18,19], meeting these needs can be challenging for parents shortly after learning of the intellectual disability diagnosis; thus, parenting a child with intellectual disabilities is likely to result in some stress for parents [3,4]. Therefore, parents require information, knowledge, and additional support in raising a learner with intellectual disabilities to enhance their support for these learners and increase their level of independence and development [3].

Parents and their disabled children have always been ignored and isolated from the rest of society and the educational system [17]. As a result, studies on disabilities have been concentrated in cities, with little documentation in rural and suburban areas, and the majority of the few studies conducted in South Africa have only focused on people with disabilities rather than those who live with and care for them [4,5]. According to the findings of the limited studies, many parents in rural and suburban areas have little or no knowledge or understanding of intellectual disabilities and how to support learners with intellectual disabilities [19,20,21]. Similarly, according to a study conducted by Lushozi [3], parents at four Soweto special schools appeared to have limited understanding, knowledge, and information about the implications of intellectual disabilities and the challenges their children face. These parents face difficulties in supporting their children with intellectual disabilities as they transition from mainstream to special schools [18].

With all that has been said, there appears to be a gap in transition planning as part of the service provision process, including preparing learners and their parents for transitions. Schools rarely emphasize parents’ support systems as part of their support for the children as they transition to a new learning environment. Subsequently, this study aimed to explore parents’ understanding of their role in supporting learners with intellectual disabilities transitioning from mainstream to special schools.

1.1. Parents’ Perceptions of Intellectual Disabilities

Determining the cause of intellectual disabilities can be challenging; a learner may be intellectually disabled for various reasons that are unknown [13]. According to Patel et al. [22], over 75% of individuals with intellectual disabilities have mild intellectual disabilities. The underlying specific causes are likely to be identified. In contrast, an underlying biological cause is highly probable within a small percentage of individuals with severe intellectual disabilities. For those with severe to profound intellectual disabilities, genetic abnormalities, inborn errors of metabolism, and brain malformations are considered significant causes. Subsequently, parents of learners with intellectual disabilities are often unfamiliar with the disability, lack accurate information, and lack access to effective guidance [22]. However, because of high illiteracy levels among parents, including various speculations and beliefs about the causes of intellectual disability, it seems like parents are not well-informed about intellectual disability and its causes [4]. This contributes to the negative traditional perception and the classification of people in wheelchairs as a single group that represents people with disabilities, simply because disability is often associated with physical defects [6].

Furthermore, Adesina et al. [12] established in their study that biblical perspectives have played a significant role in beliefs and decision making during the Ancient Greek eras. Consequently, the birth of a child with congenital anomalies was considered a sign that their parents had angered the gods or that anomalies were caused by demonic affliction [12]. Similarly, according to traditional beliefs in African countries, such as Ghana, Nigeria, and Côte d’Ivoire, it was also believed that children born with disabilities were a result of evil spirit possession, witchcraft, and parents’ punishment for sinful adultery [5,23]. It also appears that South African parents of learners with intellectual disabilities in Khayelitsha, Cape Town, believe the cause to be evil spirits from jealous neighbors, witchcraft, and fear of ancestors; thus, they resort to traditional healers for a cure or perform rituals for ancestors [24]. According to Xaba [17], parents in KwaZulu Natal believed that intellectual disabilities were caused by cultural norms that were not respected and that the only solution to the child’s problem was ritual performance. Similarly, parents in Free State also believed that witchcraft, incorrect adherence to customs, and the father’s refusal to perform rituals caused intellectual disability [4]. In Sekhukhune and Giyani, Limpopo parents and communities considered having a child with intellectual disabilities a punishment for the parents or because of witchcraft [5,10]. As a result, parents have always been hesitant to come forward out of shame and fear of discrimination, and their children with disabilities have been hidden from the community and have remained at home with no access to school or have been forced to leave home and move to private facilities, while those who have attended school have frequently faced embarrassment, discrimination, and misunderstanding [25]. Subsequently, because of a lack of knowledge, having a disabled child is regarded as a source of shame for parents, and many children grow up with their parents and siblings due to lack of education, social support, and social services [14].

1.2. Understanding the Concept of Parental Involvement

Parental involvement and its positive impact on academic achievement and the development of learners with intellectual disabilities have long piqued the interest of educational researchers [26,27]. However, parental involvement has been challenging to define because it has been assigned and operationalized in so many contexts that the concept’s exact meaning has become speculative. As a result, the concept appears vague, with many definitions, and not everyone has the same understanding of the concept [28,29,30]. Parental involvement as a research concept should consider parental differences. Parents and parent groups differ in many ways, including behaviors, beliefs, convictions, and situational characteristics, such as socioeconomic and ethnocultural background, language skills, level of education, and home situation [31]. According to research, teachers and school communities define parental involvement as being involved in educational processes, such as helping with school activities, homework, and attending parent meetings to promote academic achievement. In contrast, many parents perceive parental involvement as being more involved in their children’s everyday life, such as providing proper care in the home and involving their children in the community or in church-based educational activities; subsequently, parents seem to act in ways that reflect lessons learned from their own experiences, culture, education level, and economic status [32,33,34,35,36]. Despite the prevalent belief that parental involvement plays a critical role in children’s academic success and development, there seem to be limited data applying this to learners with intellectual disabilities [28,37]. Parents who have never been exposed to or cared for individuals with disabilities might not know how to raise a learner with intellectual disabilities; furthermore, how they treat learners with intellectual disabilities is influenced by what they have learned about disability from their surroundings [5]. This simply means that individual experiences, cultural values, and religious worldviews influence how parents perceive and interpret disabilities, which influences parental stress [38]. Women are frequently abandoned by their partners, leaving them to raise these learners independently due to the superstition that evil spirits, witchcraft, or a mother’s improper relationships cause intellectual disabilities [21]. As a result, parents spend a lot of money on African medicine with the hopes of curing the learner’s disabilities [5]. On the other hand, parents with religious beliefs regard their children with intellectual disabilities as God’s gifts because they seek comfort in their religions, which assists them in dealing with their circumstances as well as accepting their children’s disabilities [5]. According to Bergeson [39], emotional readiness to parent includes being ready to prioritize the learner’s needs, being ready to accept changes in social life, and being ready to accept the changes that parenting brings to marital/partner relationships. Based on Parent Development Theory, the present study was conducted to test the hypothesis how parents perceived their role in supporting learners with intellectual disabilities transitioning from mainstream to special schools.

1.3. Parent Development Theory

Mowder’s (2005) Parent Development Theory (PDT) was the foundation for this research. The focus of this theory is on how people define their parenting role, which influences how parents interact with their children [40]. According to the Parent Development Theory, parents are individuals who recognize, accept, and perform the role of parenting by utilizing the six dimensions of bonding, discipline, education, general welfare and protection, sensitivity, and responsivity. This theory allows for understanding of parenting perceptions and behaviors related to the parenting role [40].

1.4. Parent Role Dimensions

According to the Parent Development Theory, individuals’ parenting cognitions develop over time regardless of whether they become parents or not, and once they become parents, their parenting cognitions inform their parenting behavior [40].

Bonding: Bonding is regarded as affection, love, regard, or warmth that parents feel and demonstrate towards their children [40]. A learner with a disability remains a lifelong family member; the family is thought to influence the learner’s development mostly because it provides care, love, support, protection, guidance, and direction [5]. Having a child with an intellectual disability can positively impact parents, such as fostering a special bond with the child [4]. However, a lack of parental knowledge and understanding of intellectual disabilities can harm the interaction between the parent and the learner [3]. As a result, parents’ attitudes towards disability are reflected in how they treat a learner with an intellectual disability [5].

Discipline: Discipline refers to parents establishing limits or rules for their children and ensuring that the boundaries are followed, as well as specific parental responses to the child’s behavior [40]. According to Miklein [41], parents’ methods of expressing affection and enforcing discipline differ. Parents of learners with intellectual disabilities are frequently confronted with children who are unable to follow instructions or accept reality, require constant supervision, have fragile emotions, have manipulative attitudes and behaviors, and frequently become involved in conflicts [4]. People negatively perceive these learners as ill-disciplined because of ignorance or a lack of understanding of intellectual disability. Parents lose self-confidence and develop a negative self-image because they judge themselves negatively and see themselves as failures for failing to discipline and control their children [20]. As a result of their lack of knowledge about how to best handle their child’s behavior, these parents may fail to provide adequate support, making them feel like bad parents [42]. To some extent, parental guidance and discipline are essential for learners’ optimal personal and social development [41].

Education: Education is the parents’ transmission of information to learners, including counseling, role modeling, advising, preparing, and showing by example [40]. Learners with intellectual disabilities require more significant parental involvement and support than their peers of the same age group without a disability [43]. Parents often encounter challenges in explaining or sharing information due to the learner’s level of cognitive functionality, thus leaving parents overwhelmed trying to find the relevant information to support these learners [44]. Therefore, schools are suitable for providing adequate support and relevant information so that parents are knowledgeable and informed about intellectual disabilities and can confidently provide support to these learners; hence, education is also emphasized within the home to give the learners guidance [20].

General welfare and protection: Parents guarantee that their children are safe and that their basic needs, such as adequate clothing, food, shelter, and water, are met [40]. Learners with intellectual disabilities frequently face full-fledged harassment and abuse from peers, community members, and, most disturbingly, their own families. In addition, the learner’s disability is exacerbated by a lack of support from the family and parents and negative attitudes from the community [5]. Parents of learners with intellectual disabilities must constantly protect their children from external harm, such as teasing and ill-treatment from their communities and peers [4].

Responsivity: Responsivity is the extent to which parents respond to their children’s needs (for example, when a parent hears, sees, or perceives that their child requires assistance or support and the parent responds) [40]. Parental responses to a learner’s anger, sadness, and fear are associated with better emotion regulation, so assisting a learner in better understanding the causes underlying their angry feelings and assisting them in resolving the problem causing those emotions may provide skills they can use the next time they feel angry when playing with a peer [45]. Learners with intellectual disabilities, on the other hand, have limitations in emotional sensitivity, self-regulation, social judgment, and adaptability; as a result, they require more parental involvement and support than peers without disabilities [2,4].

Sensitivity: Sensitivity refers to the parent’s ability to understand what the child is saying and match the response to the child’s needs; it includes a sense of accuracy with which parents understand and respond to their children [40]. Parents have a unique understanding of their child’s needs and are widely regarded as the best advocates for asserting their children’s rights and making decisions on their behalf [46].

This theory was used to outline the significance of parental perceptions and how parents in a mainstream school evolved to accommodate the specific developmental changes and needs of learners with intellectual disabilities, while exploring the difficulties these parents encountered in fulfilling their parental responsibilities. According to the Parent Development Theory, individual characteristics and beliefs are influenced by individuals’ life experiences, individuals’ personalities, their education, the parent–child relationship, the child’s individual characteristics and specific needs, family dynamics, and the social and cultural context in which the individual is living [40]. Parents of learners with intellectual disabilities, according to the Parent Development Theory, must adjust their parent role cognitions to accommodate their parenting expectations and attitudes to the learner’s specific developmental needs [40]. However, adjusting this parent role can be difficult and frustrating at times.

2. Materials and Methods

2.1. Study Settings

This study’s research location was a mainstream primary school in Gauteng, South Africa, southwest of Soweto. The chosen mainstream school is one of six primary mainstream schools in a low-income township; it has the most learner referrals to one of the area’s two special schools. Parents who are lucky to be employed, whether formally or informally, are paid a bare minimum wage. As a result, this is a no-fee-paying school, with many learners living in traditional brick homes, backyard dwellings, informal settlements, and nearby hostels. For various reasons, most learners at the school are raised by single parents, grandparents, and other extended family members. Most parents at the school have secondary education or matriculation, with only a few having a primary education or none.

Prior to data collection, the researchers obtained ethical approval (Ref: Sem 2-2020-147) from the University of Johannesburg’s Research Ethics Committee in Gauteng, South Africa. The Gauteng Department of Education also granted ethical approval (Ref: 2021/64). Furthermore, ethical considerations include informed consent, voluntary participation, anonymity, confidentiality, privacy, honesty and trust, and protection from harm. Eight parents of mainstream school students identified as having an intellectual disability took part in semi-structured interviews to collect empirical data [47,48]. The Gauteng Department of Education’s policy on Screening, Identification, Assessment, and Support was used with the interviews to corroborate the information gathered from interviews [49]. Even if documentary information is not always correct or biased, it can still be useful [47].

2.2. Research Design

Investigating and understanding the meaning people or groups attribute to a social or human problem is performed through qualitative research [48]. For these reasons, a qualitative research methodology was employed to enable the researchers to comprehend the phenomenon from the parents’ perspective. The interpretivist paradigm was used as a framework for this study to investigate parents’ perceptions of their role in transitioning learners with intellectual disabilities from mainstream to special schools. This enabled us to gather information directly from parents of learners with intellectual disabilities to better understand their role during the transition and to make sense of the text provided without passing judgment on whether their interpretation was correct, as interpretivism holds that reality is socially constructed, and that rather than a single, observable reality, there are numerous realities or interpretations of a single event [47,48,50].

Case Study Research Design

According to Okesina [50], a research design is a blueprint that covers how the researcher chooses to research to answer the research questions and how to address the research problems, data collection and analysis methods, constraints, and ethical issues involved in the process. Therefore, Stake [51] argues that a case study is a process of enquiry about the case and the product of that case within its own world. In this case, this involved focusing on parents of learners with intellectual disabilities in a mainstream school in Soweto, South Africa. Because the goal was not to generalize the findings to all parents of learners with intellectual disabilities, but rather to conduct a thorough, holistic, and in-depth investigation of the aspects that the researchers aimed to learn more about, an intrinsic case study was the best design for this study to gain an understanding of parents’ perspectives of their roles during the transition process of their children with intellectual disabilities within their natural context. This subsequently allowed the researchers to gain a close, in-depth, and real-life context of a holistic case involving one unit of analysis [51,52]. The unit of analysis, in this case, was the parents of learners with intellectual disabilities in Soweto, which will be discussed further below.

2.3. Sampling Method and Sample Selection

This study used a purposive sample selection to select parents of learners with intellectual disabilities in a mainstream school as information-rich cases for in-depth analysis. Purposive sampling collects data from various contexts and respondent groups relevant to understanding the phenomenon [52]. The population for this study was selected by identifying eight parents of learners with intellectual disabilities in the selected mainstream school in Soweto, Gauteng, South Africa. This selection was based on the assumption that they are knowledgeable, that they have a basic understanding of the issue of concern, and that they may potentially provide information-rich comprehensive data. The criterion-based selection for this study was according to the attributes below:

The learner must be assessed by educational psychologists and diagnosed with intellectual disability. These learners were selected with the consideration that there is documentation that confirms their transition from mainstream to special schools. Six out of eight of the represented learners were boys. The ages of these learners ranged from 11 to 13 years.

A parent/guardian of a learner from the identified mainstream school should be willing to participate in this study.

The parent/guardian must reside in the same household as the learner and be available after school hours. All parents were biological parents aged 31 to 69 years. Of these eight parents, two were males.

2.4. Data Collection Methods

Semi-structured interviews were conducted at the homes of the participants. With the participants’ permission, an audio recorder captured the conversation in all interview sessions, which lasted 30 to 60 min. Field notes were recorded in a journal during interviews to capture participants’ reactions and to serve as a guide during transcription. The data are presented in verbatim quotations to ensure that the participants’ voices are heard.

Triangulation was employed in the evaluation of the collected data from interviews to corroborate what the researchers were told by the participants and what was found in the school documents. The main source of data was the semi-structured interviews with parents.

2.5. Data Analysis

Thematic analysis was used to gain a deeper understanding of the meaning of a set of transcribed responses derived from semi-structured interviews. The goal was to create a story from the texts of interest and to develop codes as salient themes emerged inductively from the texts [53]. To ensure ethical considerations, participants were assigned prefix letters, and their responses were transcribed verbatim from audio-recorded interviews and field notes recorded in a journal. Parent number one was assigned Parent A, parent number two was assigned parent B, and so on, up to parent number eight. The main themes and categories were used to present the data and to answer the research questions using excerpts from the interviews. The data analysis process included familiarizing ourselves with the data, generating preliminary codes, searching for themes, reviewing themes, defining and naming themes, and, finally, producing the report discussed in the section below.

3. Results

The results of the current study are interpreted based on the themes: parents’ perception of intellectual disabilities, parents’ psychological challenges following the intellectual disability diagnosis, lack of support from mainstream schools during the transition process, parents’ lack of confidence in supporting their children with intellectual disabilities due to their level of education, and, finally, parents’ desire for holistic support in understanding intellectual disabilities.

3.1. Parents’ Perception of Intellectual Disabilities

Parents’ perception of their children’s intellectual disability was unexpected. Most parents in this study admitted that they had no idea what intellectual disability was and that they did not perceive it as a form of disability but as deficient performance at school.

3.1.1. Parents’ Lack of Intellectual Disability Knowledge

Parents explained that recognizing and identifying children with intellectual disabilities can be confusing and challenging. The findings of this study revealed that parents are unaware of intellectual disabilities. While their various explanations and understandings of intellectual disabilities included the behaviors that different parents might experience at home, they were unable to connect these behaviors to the main topic of this study. According to this study’s findings, most parents have no idea what intellectual disability is. For example, one parent expressed their views about intellectual disability in the following manner:

“Well, I do not know. I do not know what her problem is, her problem is only at school”

(Parent A, 46-year-old mother, unemployed). Without hesitation, this participant said:

“I do not know what intellectual disability is”

(Parent F, 44-year-old father, employed as a security guard). Similarly, to the other participants, this mother added:

“I do not know what they mean when they say that”

(Parent H, 39-year-old mother, employed as a store cashier).

3.1.2. Academic Challenges

Despite the initial uncertainty about identifying intellectual disabilities, parents were concerned that their children were unable to perform basic academic tasks, such as reading and writing.

It is not unusual for parents to get frustrated when faced with a predicament with no solution. One of the male participants acknowledged that he does not know what intellectual disability is, but that his son struggles with reading and writing. His facial expression reflected his frustrations when he explained that he did not understand why his son struggled to read such simple words.

“I do not know what intellectual disability is, but when I look at my child, I can say his problem is at school because he always had a problem with reading and writing. Even when I tried to make him read simple words like “dad or mom” he struggled, I do not know what causes him to struggle reading such simple words”

(Parent F, a 44-year-old father, employed as a security guard).

Some parents identified their children with intellectual disabilities as “slow learners,” a term used in township slang to describe someone who struggles academically in a mainstream school. Like the above-mentioned frustrated father, this mother also reflected minimal knowledge of intellectual disabilities and seemed to be unsure about the connection between her daughter’s academic challenges and her limited memory. She was in deep thought as she responded:

“When the child cannot read or write their name, she is a slow learner. A slow learner is a child that is slow at school”

(Parent G, 45-year-old, employed as a receptionist).

Another parent added:

“All I can say is that he is slow, you have to repeat one thing several times”

(Parent B, 41-year-old mother, employed as a cleaner).

3.1.3. Learners Require Repeated Instructions

Data from the interviews revealed that parents of learners with intellectual disabilities faced learners who frequently forgot to follow given instructions, which had to be repeated several times. This included simple instructions, such as being sent to the store to buy some items and the child returning empty-handed and claiming they forgot what they were supposed to buy. This is what these parents said:

“It is just that she is forgetful, she is quick to forget when you send her things and comes back with nothing saying she forgot”

(Parent A, 46-year-old mother, unemployed).

Another mother described her experience:

“Most of the time, he forgets; when I tell him to do something today, I have to repeat the same instruction tomorrow…so I have to be patient with him, even if I can remind him the same thing from January to December, I have to keep on reminding him until I am sure that he understands and then we can move on to the next instruction”

(Parent B, 41-year-old mother, employed as a cleaner). Another parent added:

“I do not know how to explain it, I do not know if I am correct, but I think it is when a child cannot do the things that other children are doing in class. When I tell him to read, he can take the whole day just to read one word. When you ask him tomorrow, he cannot remember. I think that is what that “inte-what-what” disability is”

(Parent H, 39-year-old mother, employed as a store cashier).

Even though most parents believed their children with intellectual disabilities were the same as other children, some parents explained how their children occasionally required more support than their siblings without intellectual disabilities.

“I do not treat my child the same as other children, she has a brother that is currently in Grade R but if I compare them she needs more support than the brother, I have to monitor her every morning that she is properly dressed before she goes to school, do you see how cold it is outside, she can go to school wearing a short sleeve shirt, she needs more of my time than her brother, not only with school work but with everything”

(Parent G, 45-year-old, employed as a receptionist).

3.1.4. Unusual Behaviors Exhibited by Learners

Several parents raised concerns about their children’s aggressive behavior and bullying. This parent described how her child, who was about to turn 13 years old, began acting aggressively and throwing tantrums at a noticeably young age, even before he was identified as having intellectual disabilities, and how this behavior improved when he was around younger children as opposed to peers his own age:

“I used to receive calls every day from teachers complaining that he was beating other children, and when they reprimand him, he will scream and cry for hours until I arrive, by then he was still young, even now he still fights because he is short-tempered and likes to fight when he plays with peers of the same age, they always fight, it is better when he plays with (neighbor’s child) who is six, seven”

(Parent B, 41-year-old mother, employed as a cleaner).

Because parents are aware that their children struggle to meet the required academic expectations at school, they assist these children with schoolwork so that they can keep up with the rest of their peers. One mother explained that her son’s facial expression changed in seconds when schoolwork was mentioned. She stated, as follows:

“When you want to assist with schoolwork, the mood suddenly changes and he gets angry, he shouts and will refuse to say he is tired, he will complain and say that when he is at school, they want him to write even when he is at home he is expected to write, he always has excuses to avoid writing”

(Parent D, 38-year-old mother, employed as a domestic worker).

Surprisingly, even though the findings highlight academic challenges, most parents were proud to talk about their children’s capabilities. You could tell by the sudden change in the parents’ facial expressions when they bragged about their children’s strengths. The parent below expressed his son’s ability to excel in activities that required him to use his hands, despite academic challenges:

“When it comes to working with his hands, he does amazing things, give him a cell phone now and you will see miracles, he can access the areas that you cannot access, he can dismantle a bicycle into pieces, dismantle the parts and reassemble it into a moving bicycle”

(Parents C, 69-year-old father, pensioner).

This mother was proud to highlight that she learned some things from her child, regardless of the academic challenges encountered:

“He can play soccer and use a cell phone even better than I do. I learn some things from him, especially with phones and soccer”

(Parent H, 39-year-old mother, employed as a store cashier).

3.2. Parents’ Psychological Challenges Because of Their Children’s Intellectual Disability Diagnosis

“A journey into the unknown can be accompanied by many fears, frustration, loneliness and sometimes confusion” [54].

When parents discover that their child has a disability, they embark on a journey that will lead them to a life that is often filled with strong emotions, and many will feel isolated and alone. Parents described how difficult it was to comprehend their children’s conditions. Several parents described how they were initially in denial because their children appeared normal, before finally accepting their child’s diagnosis; they were also concerned about their children’s futures during the interviews. One mother described her guilt for having a child with intellectual disabilities. Parents who believed in God explained that they had accepted their child’s uniqueness.

3.2.1. Confusion following the Sudden Intellectual Disability Diagnosis

Some parents stated that because they did not understand intellectual disability and what it entails, they were confused when they learned about their children’s conditions because they seemed normal. One mother, who was constantly moving around during the interview session while her husband responded to most of the questions, elaborated on her thoughts before standing up to leave the room.

“It is so confusing, firstly, I must understand that he is going a special school. I do not even understand what they do at the school, it is difficult, he is normal like his friends, sometimes it is difficult for me to explain to people because I am confused myself”

(Parents C, 60-year-old mother, pensioner).

3.2.2. Distress Experienced by Parents and Learners

When the parents were interviewed, some were still very emotional as they reflected on their children’s conditions. One parent explained her situation:

“It was painful, it is painful but I accepted. It is very difficult. It is painful to know that your child will never go to university, I am still hurting because I do not understand it myself”

(Parent A, 46-year-old mother, unemployed).

Some parents described how their children also struggled emotionally when they considered being sent to special schools because these schools are viewed as mental institutions in townships. These learners also worried about being called offensive names and being teased by their peers. Consequently, their children refused to go to special schools.

“He refused, he said he would rather go to Mpumalanga and live with my mother than go to a school for insane learners, his friends are going to laugh at him. He is not crazy why do I want to take him to that school…he refused”

(Parent E, 31-year-old mother, self-employed).

3.2.3. Denial

When a parent is suddenly informed that the child they had hoped would succeed in life has an intellectual disability, it is common for them to go through the denial stage. Some parents reported that they used to cry every day because their children appeared normal and they could do other tasks independently besides reading and writing. A mother who found it difficult to accept that her child had intellectual disabilities went as far as to seek additional classes as a possible treatment.

“I used to cry, and I was always sad, I was going through a lot around that time. I lost my husband a few months before I was told that my son will be transferred to a special school because he was not coping. I just kept asking myself why I have to take him to that school because he is not crazy, it was even difficult to explain to him. I decided to take him to a place in Chiawelo for extra classes thinking that he will be okay. So, it was bad for me. I later realized that my sadness is affecting my children”

(Parent D, 38-year-old mother, employed as a domestic worker).

It is a widespread practice in township schools for parents to transfer their children from one school to another when they have disagreements with school personnel or as a precaution against circumstances beyond their control. Following their son’s intellectual disability diagnosis, one mother explained how a fellow parent from the same school chose to de-register the child to seek placement at another school:

“There is a parent that said she will not take her child to a special school and instead took her to another normal school. I think she did that because she does not believe it or maybe she is afraid, I do not know”

(Parent G, 45-year-old, employed as a receptionist).

Parents of children with intellectual disabilities frequently feel awkward accepting or discussing it. During the interviews, one participant stated that, even though she did not understand what intellectual disability was, she did not believe her son should be classified as having an intellectual disability because he behaved differently at home than at school. He was different from his niece, who attended a local special school:

“My son at home and (child’s name) at school are different and they are not the same. My boy has a problem with writing and learning at school, but at home, he is the same as other children, he is not like my cousin who attends (Special School name), because she is just a self-isolating person who just keeps quiet, at some point she just urinates while seated. But my son is different, I send him to the mall or stores, he can even withdraw money from an ATM. When I send him to the mall, I must explain exactly which store he must go to, I cannot say to him go to (Store name) because I know he cannot read the name (Store name). Just that it is even harder to describe a child with intellectual disability because my son is not disabled”

(Parent E, 31-year-old mother, self-employed).

The facial expression of the father below indicated disapproval of his son’s diagnosis as he explained that he treated him the same as other children and that he was capable of handling his assigned responsibilities independently:

“My son is just like any other child, and I treat him the same as other children. He knows that he has to lock the door when he goes to school, he also knows that he has to do his chores after school”

(Parent F, 44-year-old, employed as a security guard).

3.2.4. Learners Regarded as a Punishment or Blessing from God

One parent expressed feeling punished over having a child with an intellectual disability and questioned God’s decision in selecting her.

“I used to cry on a daily basis, and always asked God, why me? Until I decided that I have to be strong for my son. It is painful to be treated like an outsider, it is difficult”

(Parent H, 39-year-old mother, employed as a store cashier).

In contrast, parents who believed in God regarded their children with intellectual disabilities as blessings and accepted their uniqueness:

“I am a pastor and I know that God will never give us a child with disabilities without any solutions, God takes a person who has nothing and put them up there and make them to be recognized”

(Parents C, 69-year-old father, pensioner).

3.2.5. Concerns about Their Children’s Future

Worrying about the future is common among parents burdened with negative emotions about their children’s independence after school or after the parents die. The parent in the excerpt below became emotional when she discussed her daughter’s inability to attend university:

“It is painful to know that your child will never go to university like other children”

(Parent A, 46-year-old mother, unemployed).

Parents would go above and beyond to support their children because they wanted the best for them. This parent believed his child would one day succeed as an engineer or mechanic.

“I do not know if they have engineering in special schools…we trust that he is going to be a successful engineer or mechanic one day”

(Parents C, 69-year-old father, pensioner).

Relatedly, another parent who had hoped his only son would become a lawyer one day expressed concerns about the future for his son. The parent elaborated:

“He is my only son and I wanted him to become a lawyer. now I do not know what will happen to him when his mother and I passed on”

(Parent F, 44-year-old, employed as a security guard).

3.2.6. Emotional Trauma Caused by Discrimination and Stigma Directed at Families

Most parents reported that community members did not understand the behaviors displayed by their children with intellectual disabilities, even when they tried to educate them about their children’s conditions to help them understand. In some cases, parents were accused of spoiling their children, failing to discipline them, or making up excuses for their children’s bad behavior:

“I try to explain when they come to complain, but I am always told that I am making excuses for her… I have been told that I spoil her… and that I allow her to get out of control”

(Parent G, 45-year-old, employed as a receptionist).

Because disability is associated with physical defects in townships, community members appeared ignorant and lacked an understanding of intellectual disability, so they expected it to be a visible condition that did not need to be explained. The parent below explained her encounter:

“I no longer talk to my neighbour because of the things she said about my child, something happened that involved my son, I do not remember exactly what happened, even when l explained they were not interested to hear me out, she asked me to show it to her (the disability) and walked away while I was talking”

(Parent H, 39-year-old mother, employed as a store cashier).

Unexpectedly, one parent revealed that she equated disabilities with physical flaws and that special schools are for the disabled.

“I did not understand the school as well because according to me a special school is for disabled children and my son is not disabled”

(Parent E, 31-year-old mother, self-employed).

In this community, much abuse is directed at learners with intellectual disabilities, undermining parents’ efforts to protect and advocate for their children. While sobbing and wiping tears, this parent went on to describe an incident that occurred during her absence whereby her daughter was physically assaulted by an adult while playing with friends; when she returned, she found her daughter washing blankets belonging to the adult male, who did not understand when she explained her daughter’s intellectual disability.

“Another adult male beat her (wiping tears) alleging that he found his laundry dirty on the washing line and she was responsible, he gave it to her to come to wash it, blankets, two heavy blankets. I tried to explain to him the kind of child she is. I tried to explain to him but he just told me that there is no such thing, she knew what she was doing (pausing to blow nose). I am her parent he was supposed to come to me and complain instead of beating her they do not understand I tried to explain but that did not matter to him”

(Parent A, 46-year-old mother, unemployed).

Another parent expressed concern about the community’s lack of acceptance for her son, including his friends, who constantly mocked him, as she explained helplessly:

“In the community, it becomes difficult, especially in raising such a child in our community, the community they do not accept him, children sometimes make jokes, but his friends will just make fun of him and call him “da-da-da” using the action to say he is crazy”

(Parent D, 38-year-old mother, employed as a domestic worker).

Parents alluded to the fact that it was not only strangers who mistreated their children, but also some family members. One mother explained how she was forced to leave the family home and rent a room to avoid conflicts caused by the family’s misunderstandings of her son’s behavior as a result of his condition:

“It is sad because people do not understand these children, they will always say there is nothing wrong with my child and I allow him to be naughty, that he is spoiled. Even my family members did not understand when I told them that my son has ADHD, they blamed me for failing to discipline him. I had to move out from home. Even around here it is the same and worse because they call him “crazy or Takalani” and it is heart breaking”

(Parent B, 41-year-old mother, employed as a cleaner).

3.3. Parents’ Lack of Support from the Mainstream School

Most participants expressed dissatisfaction with how the transition process unfolded. Parents reported that they were not adequately informed about their children’s academic challenges, that they were excluded from the process, and that decisions were made on their behalf. The following examples reveal some of these experiences:

“Firstly, I was not happy with the process. I thought that they will call us as parents and explain so that we understand. But the principal just called me to come and sign the forms, can you just imagine that? I even went to district to complain because I feel that the process was not fair. Unfortunately, I could not find them, I went there three times. Mxm, it is unfair for the principal and district to decide on our behalf, I am still not happy”

(Parent D, 38-year-old mother, employed as a domestic worker).

“I thought we will be called, but it did not happen like that. I was not involved as a parent, decisions about my child were taken for me and I did not like that. I felt excluded from the process which is wrong. Those people do not care about us”

(Parent G).

3.4. Parents Lack Confidence in Their Level of Education to Support Their Children with Intellectual Disabilities

According to the current study, parents were unsure of their ability to support a learner with intellectual disabilities in transitioning to a special school. Parents described their lack of knowledge about intellectual disabilities as a challenge that limited their ability to support their children. One of the respondents stated:

“I do not know where to start, not knowing what “intellect” disability is makes it difficult for me to be 100% involved. I was not trained to teach children with disabilities”

(Parent E, 31-year-old mother, self-employed). This father added:

“One serious challenge is that I do not know anything about this disability, I do not even know how to support him, I do not understand what he is doing at school, because when I teach him at home, he tells me that at school they do not do what I am teaching him, so I leave him”

(Parent F, 44-year-old, employed as a security guard).

Another factor that influences individual characteristics is the educational status of parents. One parent reported:

“My problem is that I cannot read, I never went to school. I go to school every month to talk to his teacher, problem is that when we are home, I do not know how to assist him with his homework”

(Parents C, 69-year-old father, pensioner).

3.5. Parents’ Desire for Holistic Support in Understanding Intellectual Disabilities and How to Support These Learners

According to the findings of this study, parents expressed a desire for holistic support in terms of understanding intellectual disabilities and how to support these learners, given that most support was focused entirely on the learner as opposed to the parents who were expected to support these learners. This is how participants expressed themselves:

“There must be support groups for parents at schools, and teachers must be taught about disabilities so that they can be able to explain to us in detail”

(Parent A). Another parent said:

“Schools must consider parents as partners in educating a child. It is the responsibility of the school to educate us about disabilities, even the community members must be educated. These schools must also have psychologists or social workers who are employed. It is so stressful to be told that your child is failing at school and not get support from the school afterwards”

(Parent D). This mother added:

“They must involve us from step one. Train teachers and maybe organize counselling for us including our children because they are hurting as well”

(Parent H).

4. Discussion

Findings from the current study confirmed the hypothesis that the meanings participants attribute to their parent role characteristics during the transitioning of their children with intellectual disabilities are influenced by the connection between parent role perceptions and the participants’ individual factors. This suggests that participants perceived their individual parent role characteristics of bonding, discipline, education, general welfare and protection, responsivity, and sensitivity based on their cultural aspects and educational levels. The Parent Development Theory maintains that individuals’ parent role perceptions are based on their own background; for example, education is a relevant feature for parents [40]. However, most of the participants in the current study had limited education levels, which had a major impact on how these parents perceived their parental role and their understanding of intellectual disabilities. This study explored parents’ understandings of their role in transitioning learners with intellectual disabilities from mainstream to special schools. Research has shown that owing to parents’ educational levels and cultural aspects, identifying learners with intellectual disabilities can be particularly challenging because they can learn and frequently participate in various activities with other children their age who do not have a disability [8].

Parents of learners with intellectual disabilities discussed their role with overwhelming, mixed emotions. Even though these parents were experiencing intellectual disabilities for the first time, they were supportive of their children’s transition regardless of their lack of intellectual disability knowledge and understanding. Findings from the current study revealed that parents were unaware of intellectual disability. The parents’ identification of intellectual disabilities included the different behaviors displayed by their children at home; however, they could not connect these behaviors to this study’s main topic because disability is associated with negativity, stigma, and discrimination in townships, which impacts how parents interpret it when their child has a disability. The current study’s findings are consistent with those of Lushozi [3], who found that parents at four Soweto special schools had limited understanding, knowledge, and information about the implications of intellectual disability and their children’s challenges. Some parents identified their children with intellectual disabilities as “slow learners”, a term used in township slang to describe someone who struggles academically in a mainstream school.

These results were consistent with studies that have sought to understand the causes and meanings participants assign to the diagnosis of intellectual disabilities, which have shown that different explanations are used in different communities across Africa depending on cultural backgrounds [1,55]. Similarly, the findings of systematic reviews, which have investigated the experiences of caregivers and parents of children with intellectual disabilities in Khayelitsha, Cape Town, South Africa, revealed that all participants reported how they recognized their children as having intellectual disabilities by using biomedical and sociocultural terms to describe their child’s condition [56]. This indicates that diverse cultural groups may perceive intellectual disability differently. Parents outlined the various characteristics described by the Parent Development Theory.

Bonding: Parents conceptualized bonding as dedicating quality time to their children with intellectual disabilities while supporting their transitional path, which they did not understand. Parents discussed dedicating their time to engaging in activities that their children had mastered, and they were proud to talk about their children’s competence. You could tell by the sudden change in the parents’ facial expressions when they bragged about their children’s strengths. Even though parents did not mention verbally telling their children that they loved them, they expressed their love through the actions displayed towards their children by providing financially. For instance, some parents perceived that when they gave their children money or engaged in unnecessary spending, they expressed love towards their children.

Discipline: Even though several parents raised concerns about their children’s aggressive behavior, it was surprising to find out that only two of these parents associated their children’s aggressive behavior with intellectual disability and learned to accept the behavior as the new normal. As a measure of discipline, these parents resorted to various strategies, such as keeping their children locked inside the yard and understanding. Some parents described overwhelming encounters resulting in confusion and frustrations in dealing with these behaviors. When parents begin parenting a learner with intellectual disabilities, they may feel unprepared. This result concurs with that of being unprepared for parenting, which is defined as a lack of knowledge of child development, a lack of effective parenting strategies, and a lack of parental support. Parents discussed how people regarded their children as ill-disciplined due to a lack of intellectual disability knowledge. In some instances, parents were also accused of spoiling their children and making up excuses for their bad behavior. These results concur with other studies that have explored parental involvement and the experiences of parents and caregivers of children with disabilities, which have reported that most parents find raising a disabled child difficult; moreover, when parents appear to know little, if anything, about intellectual disabilities, they cannot be expected to know how to deal with their children at home [4,5,56].

Education: Parents explained how their education level negatively impacted the level of support towards their children with intellectual disabilities. Parents expressed frustrations because of their minimal intellectual disability knowledge as they struggled to understand why their children could not do simple academic activities. However, only one parent resorted to “Googling” information to understand the learner’s level of cognitive functionality. Parents face difficulties explaining or sharing information, leaving parents overwhelmed in their search for relevant information to support these learners [44]. Subsequently, Mngadi [20] argue that parents with some form of education beyond high school reported lower stress levels due to the continuous acquisition of information about how to care for their learners with intellectual disabilities, making them feel empowered and able to advocate on their children’s behalf. As a result, when parents feel prepared to parent, their confidence grows, their anxiety decreases, and they demonstrate more effective parenting [20]. Parents may have unrealistic expectations about their children’s academic development because they compare them to their peers or siblings, thereby expecting these learners to be competent and proficient in fulfilling societal roles and performing in certain learning areas [4].

Parents also expressed dissatisfaction with how the transition process unfolded. Parents reported that they were not adequately informed about their children’s academic challenges, that they were excluded from the process, and that decisions were made on their behalf. As a result, despite their uncertainty about intellectual disabilities and a lack of detailed information and support from the mainstream school, they were forced to accept the learner’s diagnosis as a coping strategy. These findings are similar to those of Sedibe and Fourie [57], who found that procedures were poorly communicated, parental consent was not obtained when their children went for formal diagnostic assessment by the multidisciplinary team, and feedback from the team was rarely provided. When they could not get answers from the teachers, some parents reported taking the initiative and going to the district office to seek clarification. Similarly, Sitha [54] reported that some participants experienced difficulties during the transition period and were dissatisfied with the level of support provided by the mainstream school, prompting them to act. The Screening, Identification, Assessment, and Support Policy [54] outlines the role of parents and caregivers in supporting their children and being empowered to understand how to develop their child’s potential. As a result, schools are suitable for providing adequate support and relevant information so that parents are knowledgeable and informed about intellectual disabilities and can confidently support their children [20].

General welfare and protection: All the participants raised concerns about the discrimination, abuse, and humiliation encountered by their children with intellectual disabilities. The parents in the current study explained how their children were frequently called derogatory names and frequently humiliated and teased by peers and community members, including family members in some instances. Subsequently, parents assumed responsibility for raising awareness and advocating for their children after experiencing abuse, rejection, and mistreatment by family members and the community. These results are supported by Nhlabathi [4], who found that parents of learners with intellectual disabilities constantly need to protect these learners from external harm, including teasing and ill treatment from communities and peers. According to Mathebane [58], stigma is attached not only to the child, but also to the parents. Parents face long-term psychological challenges and sleepless nights due to their lack of knowledge and understanding of their children’s intellectual disability diagnosis, as well as uncertainty about their children’s future after they die. As a result, before they can support their children, parents must overcome their emotional burdens [57]. Parents in low socioeconomic environments appear to lack community networks and relationships that allow them to function effectively. As a result, learners from low-income families frequently experience a lack of parental support because of constraints related to their economic circumstances, causing them to experience fewer academic benefits than learners from higher-income families [43].

Responsivity: Parents described how they learned to adjust and understand their children’s intellectual disability to respond to their demanding needs. Because parents were aware that their children struggled to meet the required academic expectations at school, they assisted these children with schoolwork so that they could keep up with the rest of their peers. Several parents reported showing compassion to their children and explaining their condition, including the reasons for transitioning, as well as encouraging them to ignore what others said about intellectual disability and to ignore friends who made fun of them. Parents described how their children also struggled emotionally when they considered being sent to special schools that are viewed as mental institutions in townships. These learners also worried about being called offensive names and being teased by their peers. On the other hand, parents with religious beliefs regarded their children with intellectual disabilities as gifts from God as they sought comfort in their religions, which assisted them in dealing with their circumstances and accepting their children’s conditions [2].

Sensitivity: Parents displayed their sensitivity towards their children with intellectual disabilities through their understanding of their children’s needs. Even though parents regarded their children with intellectual disabilities as the same as other children without the disability, they understood that these children required extended support compared to their younger sibling. Parents were challenged with children who were forgetful and required constant reminders.

5. Limitations

This study was limited to parents of learners with intellectual disabilities who attended a single mainstream school in Soweto, Gauteng, South Africa. Therefore, the findings cannot be generalized to parents of learners with intellectual disabilities in other mainstream schools.

The emphasis was on parents who lived in townships. As a result, it is unknown whether urban or suburban parents perceive parental involvement differently.

The small sample size was one of this study’s limitations; despite this, this study has provided useful information. A larger and more diverse sample of parents may result in additional perspectives, as this small sample is not representative of the public.

Because there were only two male participants, the data on male parental involvement and perceptions of parenting roles were limited. Future studies on the perspectives on parental involvement of fathers raising learners with intellectual disabilities may provide an understanding of psychological trauma experiences.

6. Conclusions

The results showed that the parents’ sudden revelation of their children’s intellectual disability was challenging, particularly because the parents had limited knowledge and understanding of intellectual disabilities. Throughout the data analysis, it was discovered that parents reacted with strong emotions, including fear, hurt, sadness, anger, stress, and confusion, because their children looked normal and they did not comprehend how they were said to have an intellectual disability. Some parents even reported to have cried daily as they felt burdened by the sudden discovery and felt that God had punished them. According to the findings, parents must be empowered with the identification and knowledge of a learner with an intellectual disability to enhance their support strategies towards these learners. The provision of psychosocial services in mainstream schools, as well as teacher training in skills to address the overwhelming parental support needs, will benefit parents and their intellectually disabled learners by facilitating therapy and counseling during the transition process to overcome psychological challenges. The phrase “it takes a village to raise a child” refers to the importance of community in how children are nurtured and included. This, however, does not apply to learners with intellectual disabilities. Parents raised concerns about discrimination towards and stigmatization of their children with intellectual disabilities in their communities, including within their own families. Another parent stated that she was forced to leave her home because she was constantly accused of failing to discipline her child. Parents expressed concern that community members continued to misunderstand their children’s conditions and that they were frequently labelled as “crazy” or “Takalani” after transitioning to special school. Community campaigns could raise awareness and understanding of disabilities, allowing them to shape how communities perceive learners with intellectual disabilities.

This investigation is consistent with studies conducted in townships and successfully attained its goal. The findings and recommendations will be a valuable source of reference for policy makers.

It is recommended that schools implement a transition program or plan that will consider parental support as part of the support system provided to learners for successful transitions. A significant effort must be made by schools to include and encourage parents and communities to be part of the system to alleviate negative perceptions and stigmatization. By so doing, the community might develop positive attitudes towards learners with intellectual disabilities and their parents. Recommendations indicate that more research on this topic should be conducted in various institutions to determine parents’ understanding of their role in supporting learners with intellectual disabilities in transitioning from mainstream to special schools and to determine whether the recommendations suggested were effective for the development and inclusion of parent support programs into policy.