Loss of a sibling with profound intellectual and multiple disabilities: young adults’ perspectives

BACKGROUND: The aim of this study was to analyse the experiences of bereaved young adults 2-9 years after the loss of a sibling with profound intellectual and multiple disabilities. METHOD: The research material comprised information obtained from typically developing siblings (aged 18-29 years) of persons with profound intellectual and multiple disabilities. Data were analysed using grounded theory with open and axial coding. RESULTS: Four main areas were identified, reflecting the key issues explored during the interviews. These included the following: "Lived emotions," "Quality of life," "Relationships with parents," "Reconceptualisation of identity." CONCLUSION: The research has shown that the death of a sibling with profound intellectual disabilities has significant and long-lasting implications for the brother/sister's entire life. The results of this study, combined with existing literature, provide a basis for understanding the experiences of siblings after the loss of a brother or sister with intellectual disabilities.