Quality of life of siblings of people with intellectual and developmental disabilities

In recent years, interest for siblings of people with intellectual and developmental disabilities (IDD) has increased. Scholars from different backgrounds have investigated the particular experiences of siblings of all ages. However, less is known about their quality of life perceptions as siblings. The aim of this doctoral thesis is to explore siblings’ quality of life perceptions from their own voice and through a family quality of life lens. A systematic review of the literature was performed to find relevant information about quality of life perceptions of siblings of people with IDD in the context of a family. It highlighted the lack of research from non-English speaking countries and research with younger siblings. Consequently, interviews and discussion groups with young siblings (5-11 years old) living in Catalonia (northeast Spain) were conducted to explore their perceptions of quality of life as siblings and the influence of family dynamics and parental performances on their quality of life. Despite the cultural, religious and linguistic characteristics of Catalonia, findings were in line with those of similar research; revealed the particularities of the experience of having a brother or a sister with IDD and the singular effect external influences might have on siblings’ perceptions of quality of life. Additionally, results have shown siblings mature giving rise to critical views regarding their families. It is important then to listen to siblings of all ages and to spread awareness around the necessity that researchers, practitioners and policymakers consider siblings’ views and perceptions, in order to provide siblings and their families with better services and support.