Siblings of people with intellectual and developmental disabilities: a systematic review on their quality of life perceptions in the context of a family

Abstract

Background: Within Family Quality of Life (FQoL) research, perceptions of siblings of people with intellectual and developmental disabilities (IDD) in the setting of a family are limited studied. The aim of this systematic review is to find relevant information about quality of life perceptions of siblings of people with IDD. Two main questions guided this review: (1) what are the siblings’ perceptions on quality of life in the context of their family? (2) what needs and challenges do siblings have regarding their quality of life as siblings of individuals with IDD?

Methods: A systematic search was conducted using Scopus, PsycInfo, ERIC and Web of Science databases, involving keywords and combinations such as Intellectual and Developmental Disabilities, Family Quality of Life and siblings.

Results: We identified a total of 48 articles. Analysis showed siblings’ diverse perceptions of quality of life and their multiple experiences, needs, desires and concerns.

Conclusions: Results contribute to knowledge about the quality of life and well-being of siblings of all ages. Suggestions for support, interventions and future research are given, such as the necessity of educating local communities regarding siblings’ needs, the study of siblings’ experiences in different cultural contexts or the importance of conducting research with clear theoretical frameworks and focused on the multiple components that might be influencing siblings’ quality of life.