Growing up with a sibling with a disability : the experience of having a sibling with down syndrome

Abstract

This dissertation aims to study the lived experience of having a sibling with Down syndrome. Currently, there is limited research that focuses on examining the adult sibling relationship when one of the siblings has Down syndrome, from the sibling's point of view. A phenomenological research design was used to collect the data, consisting of four adult participants who had a sibling with Down syndrome. After analysing the data, the results obtained showed that in general the sibling relationship was close and both siblings were involved in each other's lives. The participants viewed their relationship as a normal and typical relationship, similar to typical sibling relationships. Although there were some negative effects, like an increase in stress, frustration and concern about the future of their sibling, on the whole the experience was a positive one. This study is useful as it provides a deeper insight into understanding the sibling relationship when one of the siblings has Down syndrome and it attempts to examine the impact this experience might have on the individual.