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.