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.