The experiences of siblings of disabled children

Abstract

This qualitative study expands on published literature and aims at examining the experiences of seven young children, aged eight to twelve, siblings of disabled children living in Malta. Giving a voice to young siblings of disabled children is a primary objective of this study. Another aim of this study is to investigate the need for services for siblings of disabled children and to identify the strengths and weaknesses of any local services currently available. Participants in this study shared their experiences during the individual interviews and focus group where child-friendly methods were used to gather the data. The data was analysed in the light of the ‘new sociology of childhood’ and the ‘social model of disability’, the two complementary perspectives which were deemed appropriate to guide and interpret this study. The six phases of Thematic Analysis, as described by Braun and Clarke (2006, 2012, 2013), were applied to the data gathered. The three over-arching themes that have been identified from the data collected are “My life as a child”, “My connections” and “The way I see it…” Findings from this study show that siblings of disabled children share a unique relationship with their disabled siblings. Both positive and negative feelings towards their disabled siblings were shared. Their experience as siblings of disabled children helped them to develop rich personality characteristics. Siblings in this study articulated their unique needs: to gain information about the impairment of their disabled sibling, to receive support from their family and to meet other siblings and share their experiences. Findings also indicate variations in experiences, which depend on the type of impairment of the disabled sibling. However, despite the impairment, participants claimed that their disabled siblings are the best and they feel proud of their successes. Siblings of disabled children stated that they enjoy spending time with their disabled brother or sister. Despite the structural barriers encountered, siblings preferred to go out as a family rather than leaving their disabled sibling in care. Siblings in this study said that they perceive their parents as role models. They voiced the need for more parental attention and gave significant importance to loyal friendships. A number of recommendations are made in response to their strongly articulated needs, namely more parental attention, professional individual support, and siblings’ support groups for siblings who need such services.