The experiences of parents of children living with disabilities at Lehlaba Protective Workshop in Sekhukhune district of Limpopo province

Abstract

Background: Parents of children with disabilities have faced difficulties in looking after their children, be it socially, economically and financially. Parents in rural areas are mainly left with a huge burden, as there is a lack of services and support from both the state and non-governmental organisations. Parents in Sekhukhune district, a rural area in Limpopo province of South Africa, face challenges in raising their disabled children related to lack of resources and lack of services at their disposal.Objectives: This study focuses on the experiences and life circumstances faced by parents of children living with different types of disabilities at Lehlaba Protective Workshop in Sekhukhune district of Limpopo province, South Africa.Method: The study consisted of 14 participants who are parents of children living with disabilities. An interview guide with a set of questions was utilised to gather data. Thematic analysis was used to analyse the data and themes that emerged were grouped together.Results: Themes that emerged from the data showed that most of the participants had varying understandings on the causes of disabilities to their children. The participants also were of the view that a ‘cure’ for disability was available medically, spiritually or through traditional African medicine. The study also brought the notion of absent fathers, as most men do not want to be associated with children who are disabled. Stigmatisation of the parents was also a theme that the study revealed. The parents are subjected to name labelling as they are viewed to be practising witchcraft or to be paying for their sins they committed.Conclusion: Parents of children with disabilities are in their own battle in raising their children. There is a lack of support structures available for parents of children living with disabilities. There is a lack of legislation available for protecting and promoting the rights of children with disabilities. The researchers concluded that raising a child with a disability is expensive, time-consuming and straining.

More Than Just Assistive Devices: How a South African Social Enterprise Supports an Environment of Inclusion

“…This is a network of families who will connect with, educate, and conduct outreach with others who have similar experiences, as well as link them to important services, resources, and information. The organisation hopes this initiative will help to address and decrease the physical, emotional, and experiential isolation many parents of children with disabilities feel [ 19 , 66 , 67 ]. Focusing all its energy and attention on direct service provision can limit an organisation’s scale and sustainability.…”

“…There is also a lack of synergy between different government departments and their agendas, despite the fact that disability can only be addressed intersectorally. Many ideological commitments to people with disabilities have not yet been translated into law or practicable guidelines [ 17 , 19 ]. For example, although government’s commitments to disabled people were reaffirmed in the 2016 White Paper on the Rights of People with Disabilities [ 20 ], by 2020 the Department of Social Development had not yet promulgated any disability-specific legislation in line with the White Paper [ 14 ].…”

The black hole of dealing with a disability diagnosis: Views of South African rural parents

“…Speculation about the child's disability amongst community members could possibly result from the lack of proper information on what causes a disability (Gona et al 2011;Taderera & Hall 2017). As previous studies in Kilifi and Limpompo have found that disability is associated with evil spirits, punishment from God or witchcraft, this could possibly explain the aspect of people spreading rumours (Gona et al 2011;Tigere & Makhubele 2019).…”

“…The diagnosis of disability in a child presents challenges for many parents and families (Huang, Kellett & St John 2010 ; Tigere & Makhubele 2019 ; Yaacob et al 2021 ). For most parents on learning about their children’s disability, shock becomes the first response to dealing with the diagnosis (Hemming & Akhurst 2009 ; Yaacob et al 2021 ), followed by refusal to accept the diagnosis, anger and fear of the unknown world that still needs to be travelled (Huang et al 2010 ).…”

“…They further refer to this time as a ‘black hole’ as parents of children with disability grapple with the diagnosis and sometimes find themselves denying what they see (Hemming & Akhurst 2009 ). For these parents, denial and fear of being stigmatised is about protecting their children from social marginalisation and from being considered less valuable than children born without disabilities (Tigerera & Makhubele 2019 ; Tshabalala 2014 ; Yaacob et al 2021 ). This state of denial can result in helplessness and hinders parents in planning how they will cope with the child with disability (Hemming & Akhurst 2009 ).…”