The experiences of parents with children with severe intellectual disability in a South African township

Abstract

A parent’s experience of having and raising a child with intellectual disability – (ID) in a South African township has not yet been fully explored. Rural and township areas have not been given proper attention compared to urban areas in studies on this topic. The lack of discussion on parents’ experiences with living with children with ID in rural and township areas is not limited to South Africa. The literature reveals that all over the world, the research on disability has not only been more focused on urban areas rather than rural and township areas. In addition, research is more focused on the people with the disability (PWD) (Adnams, 2010) and not so much on those who have to live with and deal with these persons at home (Hubert, 2012). This lack of balance is confirmed by Chang and McConkey’s (2008) findings that most research into family care-giving was undertaken in Western, English- speaking societies, with little cognisance of possible differences across cultures. The available research on parents’ experiences of having children with ID shows that these parents are generally faced with tremendous challenges while living with and caring for these children, including financial, emotional, behavioural, marital, social, cognitive, motivational, and health problems (Chang & McConkey, 2008; Dyson, 2010; Hoogsteen, 2010; Hubert, 2010; Jahoda & Markova, 2004; Micsinszki, 2014; O’Connell, 2013; Olsson & Hwang, 2001). The little research available in South Africa on ID reveals that families who live in townships encounter different kinds of challenges with regard to having and living with children with ID (Mudhovozi, Maphula & Mashamba, 2012; Sandy, Kgole & Mavundla, 2013). This is largely as a result of the legacy of apartheid in South Africa (Adnams, 2010). This study aimed to explore and extend the knowledge on what parents of children with ID in South African townships go through. The research aims to answer the question: “What are the experiences of the parents of children with severe intellectual disability in a South African township?” Rooted in an interpretivist paradigm, a qualitative mode of inquiry was used to conduct the study, and an exploratory approach was followed as a research ent’s experience of having and raising a child with intellectual disability – (ID) in a South African township has not yet been fully explored. Rural and township areas have not been given proper attention compared to urban areas in studies on this topic. The lack of discussion on parents’ experiences with living with children with ID in rural and township areas is not limited to South Africa. The literature reveals that all over the world, the research on disability has not only been more focused on urban areas rather than rural and township areas. In addition, research is more focused on the people with the disability (PWD) (Adnams, 2010) and not so much on those who have to live with and deal with these persons at home (Hubert, 2012). This lack of balance is confirmed by Chang and McConkey’s (2008) findings that most research into family care-giving was undertaken in Western, English- speaking societies, with little cognisance of possible differences across cultures.

The available research on parents’ experiences of having children with ID shows that these parents are generally faced with tremendous challenges while living with and caring for these children, including financial, emotional, behavioural, marital, social, cognitive, motivational, and health problems (Chang & McConkey, 2008; Dyson, 2010; Hoogsteen, 2010; Hubert, 2010; Jahoda & Markova, 2004; Micsinszki, 2014; O’Connell, 2013; Olsson & Hwang, 2001). The little research available in South Africa on ID reveals that families who live in townships encounter different kinds of challenges with regard to having and living with children with ID (Mudhovozi, Maphula & Mashamba, 2012; Sandy, Kgole & Mavundla, 2013). This is largely as a result of the legacy of apartheid in South Africa (Adnams, 2010).

This study aimed to explore and extend the knowledge on what parents of children with ID in South African townships go through. The research aims to answer the question: “What are the experiences of the parents of children with severe intellectual disability in a South African township?” Rooted in an interpretivist paradigm, a qualitative mode of inquiry was used to conduct the study, and an exploratory approach was followed as a research design. Semi-structured interviews with parents of children with SID in one of the South African townships were utilized to collect data. Twenty two parents were interviewed. The study found that these parents encounter certain challenges as a result of having and taking care of these children. These challenges can be divided into two categories: 1) those that result from the nature of the child with SID, and 2) those that result from the community in which the parents live. The parents are constantly confronted with children who are often unable to or refuse to follow instructions, are unable to accept the reality, require continuous supervision, have fragile emotions, have manipulative attitudes and behaviours, and who often get into conflict with their siblings. The nature of the socio- economic environment brings its own challenges too, mainly because parents lack basic resources. This means that many people in this sector of society are unemployed, stay in shacks or RDP houses, are not educated (few have a Grade 12 qualification) and are constantly faced with the challenge of trying to provide for the basics. In addition to these two issues (the condition of the children and poverty of the community), the parents are faced with a community that is generally ignorant about ID. Community members often refuse to accept the parents and their children and these families are constantly facing rejection, bullying, teasing, and other methods of ill-treatment from the community. The children with the disability become outcasts in the community and are called by names, including “crazy” and “stupid” people. These factors commonly result in parents having to deal with extended stress or depression, burnout, restricted social lives and anger/violence issues. These problems come with many other consequences, including persisting feelings of being overwhelmed, of grief, failure, limited future prospects, powerlessness, hopelessness, helplessness, uncertainty, frustration, denial, anxiety, guilty, suffering, shame, suicidal thoughts, embarrassment, family conflict, and mental and physical exhaustion. Further health issues like heart problems and diabetes result from these problems. In addition, some parents revealed that they have been diagnosed with HIV/AIDS as well. The study proposes therefore that while the literature review shows that all parents and families of children with ID encounter certain challenges, living in a township in South Africa makes it more difficult and challenging to take care of a child with SID. It concludes that living in these areas that are plagued with socio-economic hardship increases the extent of the psychological, cognitive, physical, motivational, and behavioural impacts that come with having and living with a child with SID. The parents, mainly mothers, often face these challenges alone. They need more support from families and the community, and programmes should be designed to teach rural and township communities about ID. Community or home-based health care programmes (provision of specific personnel including occupational therapists and nurses) and economic empowerment are also a deficit in these parents’ lives. Provision of these services will hopefully not only reduce the ignorance and the stigma attached to ID, which is rife in these communities, but will help the parents (together with the community) to be able to properly care and treat the concerned children/individuals, something that will improve the quality of life for these families and eventually better their life experience as far as the disability is concerned.

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of the psychological, cognitive, physical, motivational, and behavioural impacts that come with having and living with a child with SID. The parents, mainly mothers, often face these challenges alone.

They need more support from families and the community, and programmes should be designed to teach rural and township communities about ID. Community or home-based health care programmes (provision of specific personnel including occupational therapists and nurses) and economic empowerment are also a deficit in these parents’ lives. Provision of these services will hopefully not only reduce the ignorance and the stigma attached to ID, which is rife in these communities, but will help the parents (together with the community) to be able to properly care and treat the concerned children/individuals, something that will improve the quality of life for these families and eventually better their life experience as far as the disability is concerned.