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

Date
2021-03
Journal Title
Journal ISSN
Volume Title
Publisher
Stellenbosch : Stellenbosch University
Abstract
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.
AFRIKAANSE OPSOMMING : Agtergrond: Visueel gestremde (VI) kinders benodig addisionele hulp vir hul daaglikse take as gevolg van hul verminderde onafhanklike lewensvaardighede (ILS). In skole vir kinders met spesiale opvoedkundige behoeftes (LSEN) en hoofstroom-skole met spesiale-aangepassings kan arbeidsterapeute en opgeleide assistente help om die gaping te oorburg wat die verminderde vermoëns van sulke kinders vir opvoeding inhou. In behoeftige areas van die Kaapse Metropool kan baie families dit egter nie bekostig om opgeleide versorgers in hul huisomgewing in diens neem nie. In so 'n huishouding sal 'n volwasse persoon tipies die verantwoordelikhede vir die versorging van die VI kind onderneem asook vir al die ander persone in die huishouding. So 'n persoon word dan die VI kind se se primêre tuisversorger. Doelwitte en Opjektiewe: Die hooffokus van die studie was om die las op die versorgers te bepaal en om te bepaal wat die impak op die ligaamlike, verstandilike en die emotionele gesondheid van die versorgers is. Metodes: Die dwarsdeursnitstudie het gebruikgemaak van ’n gekombineerde vraelys wat bestaan uit ’n self-ontwerpte vraelys wat gebaseer is op kwessies wat in die wetenskaplike literatuur voorkom asook die gevalideerde "Caregiver Strain Questionnaire – Short Form" (CGSQ-SF). Die CGSQ-SF meet die waarneembare, emosionele, en totale impak op versorgers. Gedurende vooraf geskeduleerde huisbesoeksessies het die versorgers die vraelys beantwoord. Die studie het 'n gekombineerde benadering gebruik om beide kwantifeerbare data soos die ekonomiese status te meet asook kwalitatiewe data soos die emosionele ondervinding wat gepaardgaan met die versorging van die VI kind. Die Universiteit van Stellenbosch se etiese kommiteë (S13/03/049) en die Wes-Kaapse Onderwys Departement (20130704-13796) het die studie goedgekeur. Professor M. Kidd van die Sentrum van Statistiese Konsultasie van die Universiteit van Stellenbosch het die statistiese ontledings uitgevoer. Die die CGSQ-SF resultate se verband met die ander veranderlikes in die studie is bepaal met behulp van Mann-Whitney U toetse en die Kruskal-Wallis toetse. Resultate: Uit die populasie van 320 VI leerders van the enigste skool vir die VI in die Kaapse Metropool het 150 leerders gedurende die kwartaal tuis ingewoon. Volgens die insluitingskriteria het slegs 95 van die 150 tuisversorgers gekwalifiseer vir die studie. Toestemming was verkry van 73 versorgers. Volgens die CGSQ-SF resultate het die meerderheid van die 73 versorgers matige ooreising in terme van algehele stremming (55/73; 75.3%) , objektiewe stremming (57/73; 78.1%) en subjektief geïnternaliseerde stremming (55/73; 75.3%) getoon. Verhoogde ooreising van versorgers het die meeste saam voorgekom met die faktore soos finansiële probleme; verminderde ILS; en ’n onwilligheid om tyd weg van hul VI kind te spandeer. Gevolgtrekking: Al die versorgers het 'n aansienlike versorgingslas en gevolglike ooreising gerapporteer. Al die deelnemende huishoudings het beide armoede ondervind en 'n VI kind gehad. Hierdie sydigheid in die studieontwerp het dit moeilik gemaak om die spesifieke stremmingslading wat aan die versorging van 'n VI kind toegeskryf kan word te onderskei van die effek van armoede. Dit was ook nie moontlik om te bepaal watter mate van huishoudelike stremming aan die teenwoordigheid van die VI kind toegeskryf kan word in vergelyking met huishoudings sonder so 'n kind nie. Kwalitatiewe inligting het daarop gedui dat versorgers nie die kind se spesiale behoeftes sien as die enigste oorsaak van die stremming wat hulle ondervind nie. Hulle grootste bekommernis was die toekoms van hulle kind as 'n gestremde volwassene.
Description
Thesis (MSc)--Stellenbosch University, 2021.
Keywords
Children with visual disabilities -- Education -- Parent participation -- Cape Town (South Africa), Caregivers -- Workload -- Cape Town (South Africa), Caregivers -- Economic aspects -- Cape Town (South Africa), Caregivers -- Social aspects -- Cape Town (South Africa), Caregivers -- Psychological aspects -- Cape Town (South Africa), UCTD
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