Raising a child with down’s syndrome: perspectives from South African urban care-givers.

Megan D. Barr, Pragashnie Govender, Gina Rencken
University of KwaZulu-Natal (Westville Campus), South Africa

Abstract
Objectives: 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.

Methods: 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).

Results: 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.

Conclusion: 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.

Keywords: Down’s syndrome, caregivers, perceptions, emotional responses