Positive experiences of mothers of a child with Down Syndrome in the Western Cape
Abstract
There has been a significant increase in the number of Down Syndrome (DS) births over the past 3 decades in South Africa. This means there are increasingly more mothers, children with DS and family members experiencing the stressors associated with the condition. However, the increase in DS births has led to the advancement of related medical and educational interventions, resulting in more families with a child with DS overcoming these stressors and discovering the positive aspects of having a child with DS.
This study aimed to uncover these positive aspects by exploring the positive experiences of a sample of mothers of a child with DS, with the hope that the findings will help society to move away from its focus on the stressors of having a child with DS to instead concentrating on the many ways in which families can cope with these stressors.
As part of the research process, face-to-face interviews were conducted as a qualitative approach to gain an in-depth understanding of this research topic. The interviews were all recorded by means of a tape recorder. There is only one hospital in the Western Cape Metropole area that specialises in this condition, and that hospital was consequently selected as the location for this research, since all mothers of children with DS are referred to this hospital. A purposive sampling method and the criterion sampling strategy were used for the selection of these five mothers with whom interviews were conducted in the hospital’s developmental clinic
The main findings of the research include both the difficult and positive experiences of being a mother of a child with DS. Two of the major themes that arose in terms of the difficult experiences were: (1) having to make many adjustments to one’s life to accommodate unpredictable health implications, developmental delays, negative perceptions, and unprofessional conduct; and (2) the difficulty of dealing with emotions, emotions of: fear, aloneness, and grieving. The mothers’ positive experiences generally developed out of their attempts to find coping mechanisms for the above challenges, and these positives centre on support, resources, faith in God, accepting the condition, a positive attitude and bonding with their child with DS. The predominant finding in terms of participants’ own recommendations for new mothers of a child with DS was for them to learn to accept the condition. Other findings addressing ways of coping with the condition were as follows: persevering, being hopeful, taking it one day at a time, having awareness and understanding of the diagnosis, being around positive people, attending regular appointments, seeking out guidance and support for your child’s development, loving your child, enjoying your child, and being present in every moment.
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