Exploring the well-being of caregivers of a family member with down syndrome in Namibia
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Date
2013
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Abstract
There is silence on Namibian families who have a member with Down syndrome (DS). Hence, research is needed regarding the experiences, stress and well-being of families who are caregivers of a family member with Down syndrome. This is important to parents who begin their married lives with a Down syndrome child in the family since it will provide them with a balanced perspective of what to expect. In addition, most studies on the experiences of caring for a Down syndrome were conducted outside the African context. No scientific information is available regarding the experiences and well-being of families as caregivers of Down syndrome children in Namibia. Furthermore, while studies have been carried out
regarding the experiences of caregivers by utilising the disease model, no studies could be traced regarding the well-being of caregivers using a positive psychological paradigm. The aim of this study was to explore the experiences and well-being of caregivers of a family member with Down syndrome in Namibia. A qualitative research design was used. The caregivers of children with Down syndrome were interviewed. The responses of participants were transcribed verbatim and themes were analysed. Various themes emerged from this study about the caregivers’ experiences and well-being when taking care of a family member with Down syndrome. The study further revealed that caregivers are faced with a variety of challenges such as having to dress, feed, bath and carry
around their child because of delayed motor development. Some caregivers experience difficulties with finances, employment, differences with partners and claimed that they receive insufficient support from their families and the community, which affects their wellbeing. Despite the challenges and difficulties, caregivers accepted their child and learnt through their experience compassion, humanity, patience, kindness, and forgiveness. Ultimately caregivers endure the hard times by relying on their spiritual beliefs. The Ministry of Health and Social Services (the planning and policy division) should plan and implement programmes to promote the well-being of families who are giving care to a member with Down’s syndrome. It is important that support groups be established in Namibia to provide friendship and emotional support to the caregivers. Recommendations for future research were made.
Description
Thesis submitted in partial fulfilment of the requirements for the Degree of Master of Arts in Clinical Psychology.
Keywords
Down syndrome