Parenting a child with disability in rural South Africa: Navigating the healthcare system

Sadiki, Marubini Christinah

doi:10.4102/ajod.v11i0.942

Cited by 6 publications

(2 citation statements)

References 11 publications

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“…As Hanass-Hancock and McKenzie (2017:9) argue, it is important to ask if SA's disability-related grants are intended as a poverty alleviation mechanism or as one aspect of a social protection system aimed at facilitating the equal participation and improved well-being of children and adults with disabilities. A societywide approach should be urgently initiated to emphasise disability inclusivity and to strengthen the implementation of existing guidelines and policies designed to uplift children with disabilities (Makwela & Smit 2022;Sadiki 2022). The reeducation of the non-disabled public at all levels is part of this process, but it is also critical that the visibility of children and adults with disabilities is increased and the issues that are important to them are amplified (Duma et al 2021;Swartz 2012).…”

Section: Discussionmentioning

confidence: 99%

‘People don’t understand what we go through!’: Caregiver views on South Africa’s care dependency grant

Trafford

2023

Afr. j. disabil.

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Background: Caregivers are under enormous pressure in trying to provide for the needs of their children with disabilities in South Africa. The care dependency grant (CDG), an unconditional cash transfer, is the primary state-subsidised intervention for the social protection of low-income caregivers of children with disabilities.Objectives: The primary objective of this substudy, within a larger multistakeholder qualitative project, was to investigate caregiver perspectives on CDG assessment and application, their beliefs about the purpose of the CDG and how they actually used these funds.Methods: Data for this qualitative research included in-depth individual interviews and one focus group discussion. Six low-income caregivers who were current or previous CDG beneficiaries participated. Deductive thematic analysis was conducted using codes related to the objectives.Results: Access to the CDG was usually too late and over-complicated. Caregivers were grateful for the CDG but it was insufficient to cover the costs of care, in the context of high unemployment and weaknesses in complementary social services. Pressure on these caregivers was intensified by criticism in their social environments and a lack of respite care.Conclusion: Caregivers need service providers to be better trained and for systems of referral to available social services to be strengthened. The whole of society ought also to be targeted for increased social inclusion facilitated by improvements in understandings of the lived experience and cost of disability.Contribution: The rapid time from data collection to write-up of this study will aid in building the evidence base on the CDG, an urgent priority for South Africa’s journey towards comprehensive social protection.

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Section: Discussionmentioning

confidence: 99%

‘People don’t understand what we go through!’: Caregiver views on South Africa’s care dependency grant

Trafford

2023

Afr. j. disabil.

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“…Datta, Russell, and Gopalakrishna [6] investigated characteristics that could predict a burden upon the parents of a child with an intellectual disability. In South Africa, studies have highlighted parents' experiences when navigating the health system and accessing disability services [7,8]. However, there is a shortage of knowledgeon SIDs, both internationally and locally.…”

Section: Introductionmentioning

confidence: 99%

There is always Sorrow: Risk Factors Faced by Parents of Children Presenting with Severe Intellectual Disabilities

Buthelezi,

Mawila

2024

J. Intellect. Disabl. Diagn. Treat.

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Background: This study investigates the risk factors faced by parents of children with Severe Intellectual Disabilities. Methods: This study used a phenomenological research design within a qualitative research approach. Six parents of children diagnosed with Severe Intellectual Disability at Learners with Special Educational Needs schools were purposively selected to participate in this study. Data were collected through semi-structured interviews and a focus group. Thematic data analysis was used to analyze data. Results: The findings of this study revealed that parents of children with Severe Intellectual Disabilities faced risks that exacerbated negative outcomes. Psychological distress, social exclusion and isolation, financial burdens, and lack of access to formal education were risk factors that hindered their ability to care for and support their children. Conclusions: Based on these findings, the study concluded that parents need access to multidisciplinary teams of healthcare professionals to support them in combatting the risk factors they face.

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Parenting a child with an intellectual disability: mapping experiences onto the power threat meaning framework

Dudley-Hicks,

James,

Morgan

2024

Disability & Society

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Parenting a child with disability in rural South Africa: Navigating the healthcare system

Abstract: No abstract available.

Cited by 6 publications

References 11 publications

‘People don’t understand what we go through!’: Caregiver views on South Africa’s care dependency grant

‘People don’t understand what we go through!’: Caregiver views on South Africa’s care dependency grant

There is always Sorrow: Risk Factors Faced by Parents of Children Presenting with Severe Intellectual Disabilities

Parenting a child with an intellectual disability: mapping experiences onto the power threat meaning framework

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