The unique physical features of the child with Down syndrome (DS) may lead to stigmatization and social isolation of the child, as well as their entire families. A child with DS may require some help and constant attention from the primary caregiver and may even be permanently dependent, depending on the severity of DS. The researcher has explored and described the experiences of primary caregivers of children with DS in the Kwazakhele community while caring for these children. The research study employed a qualitative, exploratory, descriptive and contextual research design. The research population included primary caregivers of children with DS who were between ages of two years and older because a DS diagnosis can be delayed and only be discovered later in life. Purposive sampling was used to select the research participants. The data was collected using in-depth one-on-one interviews, and all interviews were recorded using a voice recorder. Thematic analysis as a version of content analysis was used, meaning the researcher used themes and sub-themes to analyze data with the help of an independent coder. A pilot study was conducted before undertaking the actual research using the same methods and designs as those of the main study. Strategies were implemented throughout the study to ensure trustworthiness and adherence to ethical principles. The study findings revealed that the participants experienced diverse emotions upon initially finding out that their child has DS. The participants indicated that they had to modify their lives including having to give up their personal lives just to ensure that their children got the best care and their full attention. It appeared that some participants got full support from their partners and families, while other participants had no support system. With further exploration, it emerged that the study participants shared some positive experiences with their children with DS. However, they indicated a need for relevant education facilities for their children as well as community support. Recommendations were made with regard to nursing education, nursing practice and nursing research.
| Identifer | oai:union.ndltd.org:netd.ac.za/oai:union.ndltd.org:nmmu/vital:28142 |
| Date | January 2017 |
| Creators | Gobeni, Babalwa Cynthia |
| Publisher | Nelson Mandela Metropolitan University, Faculty of Health Sciences |
| Source Sets | South African National ETD Portal |
| Language | English |
| Detected Language | English |
| Type | Thesis, Masters, MCur |
| Format | xi, 93 leaves, pdf |
| Rights | Nelson Mandela Metropolitan University |
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