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

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...

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Main Authors: Pauli Van der Mescht, Salome Geertsema, Mia le Roux, Marien A. Graham, Ensa Johnson
Format: Article
Language:English
Published: AOSIS 2023-05-01
Series:South African Journal of Childhood Education
Subjects:
Online Access:https://sajce.co.za/index.php/sajce/article/view/1219
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author Pauli Van der Mescht
Salome Geertsema
Mia le Roux
Marien A. Graham
Ensa Johnson
author_facet Pauli Van der Mescht
Salome Geertsema
Mia le Roux
Marien A. Graham
Ensa Johnson
author_sort Pauli Van der Mescht
collection DOAJ
description 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.
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spelling doaj.art-24f3139bd58e4d42930d79333b8ae1d32023-07-03T14:10:12ZengAOSISSouth African Journal of Childhood Education2223-76742223-76822023-05-01131e1e1210.4102/sajce.v13i1.1219522The potential burden experienced by South African caregivers of children with severe intellectual disabilityPauli Van der Mescht0Salome Geertsema1Mia le Roux2Marien A. Graham3Ensa Johnson4Department of Speech-Language Pathology and Audiology, Faculty of Humanities, University of Pretoria, PretoriaDepartment of Speech-Language Pathology and Audiology, Faculty of Humanities, University of Pretoria, PretoriaDepartment of Speech-Language Pathology and Audiology, Faculty of Humanities, University of Pretoria, PretoriaDepartment of Science, Mathematics, and Technology Education, Faculty of Education, University of Pretoria, PretoriaDepartment of Inclusive Education, College of Education, University of South Africa, PretoriaBackground: 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.https://sajce.co.za/index.php/sajce/article/view/1219burden scale for family caregivers (bsfc)caregiver burdenparent supportsevere intellectual disabilityquality of lifesurvey.
spellingShingle Pauli Van der Mescht
Salome Geertsema
Mia le Roux
Marien A. Graham
Ensa Johnson
The potential burden experienced by South African caregivers of children with severe intellectual disability
South African Journal of Childhood Education
burden scale for family caregivers (bsfc)
caregiver burden
parent support
severe intellectual disability
quality of life
survey.
title The potential burden experienced by South African caregivers of children with severe intellectual disability
title_full The potential burden experienced by South African caregivers of children with severe intellectual disability
title_fullStr The potential burden experienced by South African caregivers of children with severe intellectual disability
title_full_unstemmed The potential burden experienced by South African caregivers of children with severe intellectual disability
title_short The potential burden experienced by South African caregivers of children with severe intellectual disability
title_sort potential burden experienced by south african caregivers of children with severe intellectual disability
topic burden scale for family caregivers (bsfc)
caregiver burden
parent support
severe intellectual disability
quality of life
survey.
url https://sajce.co.za/index.php/sajce/article/view/1219
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