Disabled young people with degenerative conditions and their parents face many service-related decisions. Previous research has typically focused on professionals’ work with these families during choice-making situations. This study shifted the focus to look at the realities of choice-making processes within families, exploring the respective roles and experiences of young people and their parents. It looked at:
• the young people’s perspectives on making choices with parents and peers
• the factors parents consider when involving young people with learning disabilities in choices
• the young people’s experiences of making choices about medical interventions
• making choices about moving on from full-time education: roles and experiences of parents
• factors and processes supporting satisfaction with choices
and
• the implications for professionals supporting families and young people through service-related choices.
This research was the result of a three year longitudinal panel study undertaken for the Department of Health as part of a major research programme at SPRU.