The experience of raising a child with down syndrome : perceptions of caregivers in KwaZulu-Natal.
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Date
2013
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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.
Description
Thesis (M.O.T.)-University of KwaZulu-Natal, Durban, 2013.
Keywords
Down syndrome--KwaZulu-Natal., Caregivers--KwaZulu-Natal., Genetic disorders--KwaZulu-Natal., Theses--Occupational therapy.