Living an Adult Life with a Sibling with Down Syndrome: Examining siblings’ Personal and Professional Choices

The increased lifespan of people with Down syndrome (DS) is a very positive development. However, parents, who are often the primary caregivers, can struggle to provide the support their child with DS needs as they get older. The extent to which siblings are willing/able to support a brother or sister with DS depends on the quality of their relationship with that person and on their perceptions of how having a sibling with DS has impacted their lives. We assessed these impacts by analysing responses from 120 siblings of a person with DS to a questionnaire comprising both closed and open-ended questions. Having a sibling with DS had a generally positive impact on people's values and personal and professional choices. Some choices (e.g. occupation, activities, residential proximity) were impacted by multiple factors (e.g. gender, sibling position, number of siblings). These considerations may influence people's willingness to help support a sibling with DS.