The experiences of mothers of young adults with an intellectual disability transitioning from secondary school to adult life

Abstract

Background The transition from school to adulthood for young adults with an intellectual disability involves movement from a generally secure and supported school environment to an emerging adult life that may be characterised by a wide variation in adoption of adult roles related to employment, independent living, friendships, and day activities.

Method In this study, we investigated the perspectives of 18 mothers of young adults with either Down syndrome or Rett syndrome through qualitative semistructured interviews. The International Classification of Functioning, Disability and Health (ICF) framework was used as a conceptual basis.

Results Themes that emerged included adult roles assumed during the day, accommodation, quality of life, living a “good” life, and family impact.

Conclusions In contrast with Rett syndrome, mothers of young adults with Down syndrome described more difficult pathways to attaining stability in adult roles. Environmental facilitators and barriers emerged in the area of support, relationships, services, systems, and policies.

Keywords:

• transitions
• intellectual disability
• Down syndrome
• Rett syndrome
• ICF
• school
• adulthood

Acknowledgements

We would like to thank the mothers who willingly took part in this study and shared their experiences. We would like to acknowledge funding of this project from ARC Linkage Grant LP0989847, titled The Transition From Secondary School to Adulthood: Experiences and Life Outcomes for Youth With an Intellectual Disability and Their Families.

Note

1 All names used within quotes are pseudonyms.

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.