The experience of raising a child with down syndrome : perceptions of caregivers in KwaZulu-Natal.

Abstract

Introduction: Due to limited research within KwaZulu-Natal there is a deficit in the knowledge base and understanding surrounding the dynamics of caring for a child diagnosed with Down syndrome. The study aims to inform health professionals who adopt a psychosocial approach, such as occupational therapist, in an effort to improve the therapy and handling of the caregivers and children. Methodology: A sequential explanatory mixed method approach with an interpretive phenomenological perspective was utilized. Sampling utilized non-probability methods from the Down syndrome Association (KwaZulu-Natal) database. An initial quantitative descriptive survey (n=57) guided the subsequent qualitative phase encompassing focus groups and interviews (n=18). Quantitative data was statistically analyzed using SPSS (version 21) and the transcribed quantitative data utilized thematic analysis with in vivo, emotions and descriptive coding. Results and Discussion: Experiences were primarily influenced by initial reactions of the participants; their level of knowledge of the syndrome and reactions to informing their family and community. Thereafter the positive and negative aspects of raising the child affected their perceptions. Conclusion: Many factors contributed to the participants‟ perceptions of raising a child with Down syndrome, namely: community and family attitudes; support structures available; positive factors such as personal growth as well as negative factors such as the erratic health of the child and difficulties with inter-personal relationships. However; an overall positive perception was reported by the participants, with an emphasis on advice to other caregivers based on lived experience.