The potential burden experienced by South African caregivers of children with severe intellectual disability

Abstract

reported by Grau et al. (2015) that increased stress and burden was observed in caregivers who chronically care for individuals with disabilities. High stress levels and continuous demands on caregivers to support their CWSID could lead to depressive tendencies, such as increased anxiety and decreased quality of life (QoL) (Javalkar et al. 2017). The latter proves to be more prevalent among caregivers of CWSID (Crnic et al. 2017). In a study carried out by Peng et al. (2022) it was found that burden was increased in caregivers of CWSID leading to higher stress levels on multiple levels of daily functioning. Burden does not only impact caregivers on an emotional level but also on an economic or financial level leading to Background: Physical, financial, social and emotional demands placed on caregivers caring for their children with severe intellectual disabilities (CWSID) could lead to high levels of burden. Aim: This study aimed to evaluate the potential level of burden experienced by South African caregivers and aimed to identify possible contributing risk factors for increased levels of caregiver burden. Setting: Online and community parent support groups. Methods: This quantitative survey design study utilised data from 218 South African caregivers of CWSID. Both descriptive and inferential statistics were used for analysis. Family is the main support for 67% of participants. Results: Moderate to severe levels of caregiver burden were reported. No definite links between potentially contributing demographic risk factors and the overall level of caregiver burden were found. Caregivers of CWSID need to receive the required support from an early stage in the child’s diagnosis to decrease potential caregiver burden and improve quality of life (QoL). Conclusion: Implications on intervention and prevention practices could inform the creation and implementation of a protocol to avert increased caregiver burden. Future research could be conducted to determine the implications of intervention towards CWSID and their family to decrease caregiver burden. Contribution: The study provided insight into the burden experienced by caregivers of CWSID. This is in line with the journal as it further proves how vulnerable CWSID are and the support they should be receiving from professionals.