What are the experiences of female siblings of persons with disability?

Abstract

Over the past decades, the disability field has flourished with more attention, awareness and research on the subject. Despite this, the focus has always been the person with disability, and at times their parents. The siblings of persons with disability remain invisible. The importance of the siblings of persons with disability is greatly disregarded, despite siblings being the people who accompany the person with disability throughout their entire life. This project intends to look at the lived experience of female siblings of persons with disability, in order to examine whether the gender of the siblings had an impact on the level of expected caregiving duties towards their disabled sibling. The discussion will focus on the experience of living with a sibling who has a disability, life choices and the impact of their sibling’s disability on their family experience, their present lives and their future. Grigoryeva (2017) described female caregiving roles to be the natural unpaid duties expected to be taken on by the women in the family whenever this is required. Lee et al (2019) claims female siblings are most likely to take over caregiving roles from their mothers. Parents’ expectations will also be explored, together with societal influence and expectations. Davys et al (2010) mentioned that societal influences across cultures put expectations on families, with prevalence women, to take on the care of their family members in need. Interpretative Phenomenological Analysis (IPA) has been used as the methodological framework. Interviews with eight female siblings of persons with disability were held. Due to the pandemic, interviewees were given the choice between face-to-face interviews or online interviews. Following discussions of their experiences of living with their disabled siblings, and the impact of the disability on various aspects of their lives, the discussion followed up with the required service developments to deliver the real needs of siblings of persons with disability will be discussed, including the benefits of support groups.