Family support experiences of adult persons with intellectual disability and challenging behaviour: A scoping review of qualitative studies

Abstract

There has been scant research on the experiences of families caring for adults with intellectual disability who use challenging behaviour as a way of making their needs known. The aim of this scoping review was to synthesize the qualitative research data on the family support experiences of adult family members with intellectual disability who use challenging behaviour in this way. A systematic search was undertaken from five databases during December 2024 and updated in April 2025. A total of 20 studies were included in the review. Data were analysed using a thematic analysis method. The number of study participants in these studies ranged from 4 to 30. Most of them were parents and predominantly mothers. The results show that caring for adults with intellectual disability and challenging behaviour reflects a dual reality. The negative experiences refer to caregiving difficulties and inadequate formal support, while the positive experiences are associated with support from informal sources and caregivers’ fulfilment and gains. The available research did not offer sufficient data for a synthesis of how families might be affected by challenging behaviour. Future research should investigate how the negative and positive aspects of their families can be shaped to make a positive impact on caring for people with intellectual disability and co-existing challenging behaviour.