Abstract
This study addresses a gap from a South African urban perspective on the knowledge and emotional responses of caregivers with children diagnosed with Down's syndrome (DS). The study is an initial step towards informing health professionals who adopt a biopsychosocial approach, in an effort to improve interventions for both caregivers and children. A simple descriptive survey was utilized with 57 participants who were caregivers of children with DS. Data was analyzed descriptively using the Statistical Package for Social Scientists (SPSS) (version 21). The caregivers' initial reactions when discovering that the child had DS included shock, sadness and anxiety. When considering the etiology of Down's syndrome, findings reflected that caregivers understood DS as a medical condition relating to chromosomal abnormalities rather than attribution of the syndrome to a fault of their own. Despite the immediate reactions, the caregivers' initial emotions toward the child rather than the situation were positive and unchanged by the subsequent challenges in caring for the child. The caregivers indicated feelings of love toward the child notwithstanding the diagnosis. This study allowed for the subjective experience, perceptions and attitudes of caregivers to be investigated, and raised further questions into the deeper meanings and experiences of caregivers towards assisting practitioners in understanding the dynamics surrounding care-giving that may influence holistic interventions.
Highlights
A review of the available literature revealed limited relevant evidence related to raising a child with Down’s syndrome (DS) within an African context.[1]
A number of participants (38.6%) cared for a child under the age of five years followed by 26.3% caring for children between the ages of five to ten years
In terms of living circumstances, 52.6% of the participants lived in a city or town, 28.1% lived in townships 15.8% lived in informal settlements and 3.5% were living in other settings
Summary
A review of the available literature revealed limited relevant evidence related to raising a child with Down’s syndrome (DS) within an African context.[1] many aspects such as physical characteristics[2,3] and health difficulties[3] have been identified and found to be similar in individuals with DS, many aspects of the syndrome are not yet comprehensively understood when it comes to the dynamics of interpersonal relationships. With increasing research in and around children with DS globally, there is the hope that a greater understanding of the syndrome will assist towards adequately incorporating these children into society;[4] decrease the cases of neglect,[5] ensure that rehabilitative intervention is optimized to enhance quality of life for both the person with DS and their caregivers, and help to increase successful experiences of both the child with DS and their caregivers. Providing additional research within an African context may contribute to enhancing practitioner’s interventions related to care-giver support
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