Epidemiology and Biostatistics

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Browsing Epidemiology and Biostatistics by browse.metadata.advisor "Barnes, J. M. (Johanna Maria)"

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    The impact of caring for a school-going visually impaired child in Cape Town, Western Cape on the home caregiver and the rest of the family – the health, socio-economic and psychological health burdens
    (Stellenbosch : Stellenbosch University, 2021-03) St. Jerry, Marlyse; Barnes, J. M. (Johanna Maria); Nyasule, Peter S; Stellenbosch University. Faculty of Medicine and Health Sciences. Dept. of Global Health. Epidemiology and Biostatistics.
    ENGLISH SUMMARY : Background: Visually impaired (VI) children need additional care for daily tasks due to their diminished independent living skills (ILS). In learners in Special Educational Needs (LSEN) schools and specially-adapted mainstream schools, occupational therapy and trained assistants help to bridge the gap that diminished ILS pose to their education. However, in impoverished areas of the Cape Metropole, many families cannot afford trained caregivers in their homes. Typically a maternal figure fulfils the responsibilities of caring for the VI child as well as for the rest of the household; such a person then becomes the VI child’s primary home caregiver. Aims and Objectives: The main focus of the study was to determine the caregiving load and its impact on the caregiver's physical, mental and emotional well-being. Methods: The cross-sectional study used a questionnaire consisting of a self-designed questionnaire based on issues from literature on the subject and the validated Caregiver Strain Questionnaire – Short Form (CGSQ-SF). The CGSQ-SF provides qualitative data on the noticeable, emotional, and overall impact of caregiving. During prescheduled home interview sessions, the caregivers completed the questionnaires. The mixed research method used measurable data such as financial status and qualitative data, such as the emotional experiences associated with caring for a VI child. The University of Stellenbosch ethics committee (S13/03/049) and the Western Cape Education Department (20130704-13796) approved the study. Professor M. Kidd of the Centre for Statistical Services at the University of Stellenbosch carried out the statistical analyses, Mann-Whitney U tests and Kruskal-Wallis tests analysed the relationship of variables with CGSQ-SF scores. Results: Of the population of 320 VI learners from the only school for the VI in the Cape Metropole, 150 learners resided at home during the school term. According to the inclusion criteria, only 95 of the 150 home caregivers were eligible. The study obtained consent from 73 caregivers. The CGSQ-SF scoring showed that the majority of the 73 caregivers experienced moderate strain in terms of overall (55/73; 75.3%), objective (57/73; 78.1%) and subjective internalised caregiver strain (55/73; 75.3%). Elevated caregiver strain frequently occurred with these factors: financial difficulty; diminished ILS; and reluctance to spend time away from the VI child. Conclusion: All the caregivers experienced a considerable caregiving load and subsequently substantial caregiver strain level. All the participating households experienced both poverty and caring for a VI child. This bias in the design made it difficult to attribute what strainload was due to either of these variables. It was not possible to determine whether having a VI child increased the household’s strain compared to those who did not have a VI child. The confounding nature of the design made it challenging to unravel the relationship between poverty and caregiver strain due to the presence of a VI child. Qualitative information from the caregivers suggested that they did not view their child’s special needs as the only cause for the financial struggles they face and that their biggest concern was their child’s future as a disabled adult.