Parents' perspectives on the developmental care needs of a child with Down Syndrome

[摘要] ENGLISH ABSTRACT : In the South African context, considerable remnants of the Apartheid era is still evident in lowsocio-economic areas. Parents, living in adverse conditions, namely, over-crowded housing,poor nutrition, lack of resources, as well as difficulties with access to health facilities, often donot have adequate education and information, regarding health and child development. Thechild's development cannot be separated from his/her social context; therefore, children withDown Syndrome, in low socio-economic areas, are at risk of not receiving appropriate, orproper, developmental care and support from parents to maximise their potential.This qualitative case study research aimed to provide a better understanding of how parents,living in low socio-economic areasin Cape Town, South Africa, experience raising a child withDown syndrome. The over-arching goal of this research was an in-depth exploration tounderstand the perspectives and experiences of parents, in terms of meeting the developmentalcare needs of their child with Down syndrome. Purposive sampling was used, as parents witha child who has Down syndrome, were identified at a special school. A single-case (embedded)research design was selected that focused on the individual (parent), to understand theirperceptions of the events. The data collection method included in-depth, semi-structuredinterviews with parents only. Content analysis was used as the method of data analysis.The findings revealed that parents presented similarities, such as, relying on religion to helpthem cope, lack of resources and support services in the community, as well as access to these.Some of the themes that emerged included, the personal challenges of the parents, resilienceand coping with the diagnosis, and the comorbid health conditions. The negative and positiveexperiences of the parents clarified their circumstances. The parents expressed that theirexperiences with their child instilled a unique knowledge in them, and therefore, they felt theneed to share some advice with other parents, living in a similar context, witha child who hasDown syndrome, or any other disability. In this study, the researcher offers suggestions toteachers who work with parents of children with Down syndrome, as well as otherprofessionals, namely, doctors, psychologists and various therapists, who interact with parentsof children who have Down syndrome.

[发布机构] Stellenbosch University