A survey of potential level of burden experienced by South African caregivers of children with severe intellectual disability

Abstract

Introduction: Caregivers of a child with severe intellectual disability (CWSID) often embody the sole provider of care for their CWSID. Due to the severity of the difficulties their CWSID may experience, these caregivers pose a variety of challenges when caring for their children. The demands placed on the caregiver could lead to high levels of caregiver burden which can influence the quality of child-caregiver relationship. This study evaluated the relationship between caring for a CWSID and the level of burden by using the Burden Scale for Family Caregivers. Additionally, the investigation aimed to identify potential risk factors faced by South African caregivers of CWSID that could possibly increase levels of caregiver burden. Lastly, the study proposed intervention practices that took into account both the potential risk factors identified, as well as the level of caregiver burden experienced to aid childcare. Method: Data were utilised from 218 South African caregivers of CWSID from all over the country. The study applied a quantitative approach and made use of a survey available online and paper based. The questionnaire comprised of two parts. Section A was a demographic questionnaire aimed at identifying possible risk factors to increase levels of burden and Section B covered the Burden Scale for Family Caregivers. Descriptive and inferential statistics were used for analysis. Results: The majority of caregivers (67%) identified family as their main or only form of support structure. The study did not find any obvious risk factors that could indicate a relation between the level of burden and the different demographic factors. It was found that caregivers of CWSID experience moderate to severe levels of caregiver burden due to caring for their CWSID. Conclusion: As caregivers of CWSID experience severe levels of caregiver burden, the results of the present study indicate that caregivers experience this burden in various areas of living influencing their quality of life. It is recommended that a caseworker be assigned to each CWSID to decrease caregiver burden. Due to the fact that any possible contributing risk factors could not be successfully identified, further research is recommended.