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

Abstract

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.