Experiences of caregivers of children with disabilities in semi-rural areas near Cape Town, South Africa

Bingham, Julia Ruth-Kirsten (2017-03)

Thesis (MA)--Stellenbosch University, 2017.

Thesis

ENGLISH SUMMARY: In South Africa, despite government policies aimed at supporting caregivers of children with disabilities, some caregivers still experience challenges and receive little support. In collaboration with the Disabled Children’s Action Group (DICAG), I investigated the experiences of 23 caregivers of children with disabilities—including parents, siblings, and care centre employees—at DICAG affiliated centres near Cape Town, South Africa. With an interpreter, I conducted in-depth semi structured interviews with caregivers in English, Afrikaans, and/or isiXhosa to explore their experiences. After interview transcription and translation into English, I analysed the data using thematic analysis followed by Tronto’s (1993) conceptualisation of care, comprising four stages of practice and associated virtues. I present findings about participants’ experiences using Tronto’s (1993) framework, illustrating participants’ stories relating to caring about and being attentive, taking care and being responsible, caregiving and being competent, and care receiving and responsiveness to children with disabilities. Using an ethics of care theoretical framework, I highlight the importance of learning from caregivers’ experiences in order to find ways of creating a more caring society, in which the needs of both caregivers and the cared for—children with disabilities in this case—are attended to and met, and in which care work is more equitably distributed. After discussing limitations of the study, I compare the findings with existing South African literature and care ethics, and suggest implications for research, service, and activism. Keywords: Caregivers, Parents, Mothers, Fathers, Siblings, Disability, Chronic Illness, Child care, Ethics of care, South Africa

AFRIKAANS OPSOMMING: Ten spyte van die Suid- Afrikaanse regering se beleide gerig daarop om versorgers van kinders met gestremdhede te ondersteun, ontvang sommige versorgers selde ondersteuning en ervaar hulle steeds uitdagings. In samewerking met die Disabled Childrens’s Action Group (DICAG), ondersoek ek die ervaringe van 23 versorgers van kinders met gestremdhede – insluitend die ouers, familielede en personeel van die versorgings sentrum- by DICAG erkende sentrums naby Kaapstad, Suid- Afrika. Ter ontdekking van hul ondervindinge het ek te same met ‘n tolk, in-dipete semi-struktureerde onderhoude gevoer met versorgers in Engels, Afrikaans, en/of isiXhosa. Na onderhoude getranskribeer en vertaal is na Engels, is die data geanaliseer deur van tematiese analise gebruik te maak, gevolg deur Tronto’s (1993) se konseptualisasie van omgee, wat bestaan uit vier fases van praktyke en mede deugsaamheid. Deur gebruik te maak van Tronto’s (1993) se raamwerk, lewer ek bevindinge oor deelnemers se ervarings. Deelnemers se stories wat verband hou met omgee en om bedag te wees, om te versorg en verantwoordelik te wees, versorging en om bevoeg te wees as ook die ontvang van omgee en om reageerend te wees met kinders met gestremdhede, word geillustreer. Deur ’n etiek van versorging teoretiese raamwerk te gebruik, beklemtoon ek die belangrikheid daarvan om te leer uit versorgers se ervaringe in orde om maniere te vind vir die skepping van ’n gemeenskap wat meer omgee – waar die behoeftes van beide die versorgers en die wie versorg word – die kinders met gestremdhede in die geval – omgesien en vervul word, en waar die rol van versorging meer regverdig versprei word. Na die beperkinge van die studie bepspreek is, vergelyk ek die bevindinge met reeds bestaande Suid_Afrikaanse literatuur en versorgings etieke, en stel ek implikasies voor vir navosing, diens en aktivisme. Sleutelwoorde: Versorgers, Ouers, Moeders, Vaders, Familielede, Gestremdhede, Kroniese siekte, Kinderversorging, Etiek van versorging, Suid- Afrika

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