'What's the next stage?' mothers of young adults with down syndrome explore the path to independence: a qualitative investigation

Abstract

Background An increased life expectancy for young adults with Down syndrome has coincided with legislative changes to improve access to housing and employment. This study explores the values and beliefs of mothers of young adults with Down syndrome currently involved in supporting their offspring in the possible transition from dependence to independence. Methods Eight mothers of young adults with Down syndrome were interviewed and the results were thematically analysed using the qualitative approach, Interpretative Phenomenological Analysis (IPA). Result The mothers described themselves as having a dynamic role as both gate-keepers and facilitators in aiding their offspring on the path to adulthood. Conclusions These findings are not consistent with findings of previous research, which suggested that mothers in this situation are personally and socially inclined to limit the transition of their offspring to an independent adulthood. The discussion explores the possible reasons for this change and proposes clarification to existing theoretical frameworks for understanding mothers' perspectives. Limitations of the research and future recommendations are discussed. © 2009 Blackwell Publishing Ltd.