The potential burden experienced by South African caregivers of children with severe intellectual disability
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Date
Authors
Van der Mescht, Pauli
Geertsema, Salome
Graham, Marien Alet
Le Roux, Mia
Johnson, Ensa
Journal Title
Journal ISSN
Volume Title
Publisher
University of Johannesburg
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.
Description
DATA AVAILABILITY : The data that support the findings of this study are available
from the corresponding author, E.J., upon reasonable request.
Keywords
Burden Scale for Family Caregivers (BSFC), Caregiver burden, Parent support, Severe intellectual disability, Quality of life Survey, Children with severe intellectual disabilities (CWSID), SDG-03: Good health and well-being
Sustainable Development Goals
SDG-03:Good heatlh and well-being
Citation
Van der Mescht, P.,
Geertsema, S., Le Roux, M.,
Graham, M.A. & Johnson,
E., 2023, ‘The potential
burden experienced by
South African caregivers of
children with severe
intellectual disability’, South
African Journal of Childhood
Education 13(1), a1219.
https://DOI.org/10.4102/sajce.v13i1.1219.