The Sibling Experience: An in depth analysis of adults who have siblings with disability

Abstract

This dissertation aims to investigate the experiences of adult siblings of individuals who have a disability or impairment. It shall investigate previous literature and expand on the complexity of the sibling experience of disability, as well as furthering notions of concepts such as definitions of disability, sibling adjustment, sibling outcomes and Goffman’s theory of courtesy stigma (Goffman, 1963; Broomhead, 2019; Millau, et al., 2019; Veisson, 2000; Lardieri et al. 2000). Furthermore, it shall expand upon the sibling experience as well as the views of disability which is highlighted through key themes that were found during semi structured interviews. There were three main key themes with the third having four subthemes, these included: Courtesy stigma, Caregiving and Complex emotions. The theme complex emotions highlighted four sub themes these included: Empathy and its advantages, Pride, Feelings of regret and worries about the future. The findings demonstrate that the sibling experience is one that is not one size fits all it is one that is unique to each sibling. However, some factors can come into play such as whether the impairment or disability is accepted and acknowledged by the sibling’s community, the support and resources available to the siblings. Finally, the unanticipated and informal caregiving role the sibling adopts as well as the complex emotions that accommodate these and their effects. These themes were formed from through excerpts of four participants who reflect on their experiences. Through this, the research is able to grasp the emotions around having a sibling with an impairment or disability as well the experiences and the impacts of these.