Quality of Life of siblings and parents of people with intellectual disabilities: A pilot study

This study explores the Quality of Life (Schalock, Verdugo Alonso, 2002; Giaconi, 2015; Cottini et al., 2016) of family caregivers of people with intellectual disabilities with particular attention to the perspectives of parents and siblings (brothers and sisters). Specifically, using a qualitative approach, the research aims to understand their perceptions about the levels of Quality of Life they experience (Arnold, Heller, 2018; Múries-Cantán et al., 2023). In line with the literature on the subject (Del Bianco, 2019; Taylor, Cobigo, Ouellette-Kunzt, 2019; Caldin, Giaconi, 2021; Lepri, 2023), the study highlights the importance of rethinking policies and practices to provide more effective support to families, both during the ‘During Us’ phase and in the long-term planning of ‘After Us’. The results underline the importance of considering the quality of life of the entire household in the design of interventions and services to the person, promoting empowerment and partnership between families and local services.