This research looks at what young people with disability think about their family relationships. We found that most relationships were positive. Young people with disability rely on family support and want to make their own decisions too.

We did this research to learn what young people with disability think about their family relationships. Other research has used what parents and siblings think. But excluding the perspectives of young disabled people limits the evidence base. We need to include their point of view so that future research and services can better meet their needs.

Lived experience of disability informed this research. Some of our researchers have disability or care for people with disability. The researchers also involved young people with disability who work on RAY.

Lived experience input helped to refine our research direction. We decided to focus on family relationships after talking with disabled people.

Our research followed a process called a scoping review to gather information. We focused on the perspectives of young people with disability. We looked at 19 studies and what they found.

Every study looked at relationships between young people with disability and their parents. 4 of the studies also looked at sibling relationships. Every study looked at what young people thought about their family relationships.

Our findings

• Young people with disability were mostly positive about their family relationships. They described them as close, supportive and enjoyable.

• Young people with disability also mentioned negative things about family relationships. These included family conflict and being left out of decisions and activities.

• Family provided many different kinds of support for young people with disability. They had an important role in the transition to becoming an adult.

• Family was the main source of day-to-day interaction for young people with disability.

• Some thought that relying on their family for social interaction was unhelpful. It made it harder to make other friends and do things in the community.

• Young people with disability wanted to make their own decisions and be independent. Some families were supportive of this, and some were not. Culture might play a role, but we need more research to know for sure.

What young people with disability think is important for research on family relationships. But there are still gaps for future research. We don’t know if different cultures impact on family relationships. We need more research that looks at changes in family relationships over time. We also need to look at relationships with siblings.