Original Research

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

Pauli Van der Mescht, Salome Geertsema, Mia le Roux, Marien A. Graham, Ensa Johnson
South African Journal of Childhood Education | Vol 13, No 1 | a1219 | DOI: https://doi.org/10.4102/sajce.v13i1.1219 | © 2023 Pauli Van der Mescht, Salome Geertsema, Mia Le Roux, Marien Alet Graham, Ensa Johnson | This work is licensed under CC Attribution 4.0
Submitted: 21 April 2022 | Published: 25 May 2023

About the author(s)

Pauli Van der Mescht, Department of Speech-Language Pathology and Audiology, Faculty of Humanities, University of Pretoria, Pretoria, South Africa
Salome Geertsema, Department of Speech-Language Pathology and Audiology, Faculty of Humanities, University of Pretoria, Pretoria, South Africa
Mia le Roux, Department of Speech-Language Pathology and Audiology, Faculty of Humanities, University of Pretoria, Pretoria, South Africa
Marien A. Graham, Department of Science, Mathematics, and Technology Education, Faculty of Education, University of Pretoria, Pretoria, South Africa
Ensa Johnson, Department of Inclusive Education, College of Education, University of South Africa, Pretoria, South Africa

Abstract

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.


Keywords

Burden Scale for Family Caregivers (BSFC); caregiver burden; parent support; severe intellectual disability; quality of life; survey.

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