Background: Adult siblings are important in the lives of individuals with profound intellectual disabilities, especially as parents age. However, little is known about the roles they assume. Method: We examined these roles among 58 participants from the Netherlands, who completed an online questionnaire. Results: Most participants (89.7%) assumed…

Background: Research shows that adults with intellectual and developmental disabilities (IDD) increasingly outlive caregivers, who often struggle to plan for the future and have little support and knowledge surrounding long-term care planning. Methods: The study team conducted interviews with parents and siblings of adults with IDD and performed…

Background: Families in Ireland remain the main providers of support for people with Intellectual disabilities, and the aim of this study was to map their life experiences whilst involving their family members as co-researchers. Materials and Method: This qualitative, participatory study involved 10 focus groups attended by 70 parents and siblings…

Background: Specialist short break services aim to provide enhanced support to family carers as a means of preventing children whose behaviours severely challenge from being placed in full-time residential care. To date, there is limited evidence as to the functioning and effectiveness of such services. Methods: In all, 17 children were selected…

Background: There is very little research on how and when siblings understand that they have a brother or sister with a learning disability. Research regarding young children's understanding of intelligence, suggests that they may not develop a clear understanding of ability until about 7 years of age. Method: Through interviewing parents and then…

Background: The idea that raising a child with disabilities has a negative impact on the parents' relationship is still widely accepted despite contradictory research findings. This article addresses the impact of raising a child with disabilities on family structure in the present Norwegian context. Method: Family demographics were collected at…

Background: Young people with intellectual disabilities seem to be at increased risk of developing mental health problems. The present study set out to examine the impact such difficulties can have on parents. Method: Semi-structured in-depth interviews were carried out with 13 parents and one adult sibling of 11 young people with intellectual…