title: 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.
  
  
  METHODS
  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.
authors.affiliation: Telethon Institute for Child Health Research, Centre for Child Health Research, University of Western Australia , Perth, WA , Australia. hleonard@ichr.uwa.edu.au
authors.forename: Paula
authors.initials: P
authors.lastname: Dyke
authors.forename: Jenny
authors.initials: J
authors.lastname: Bourke
authors.forename: Gwynnyth
authors.initials: G
authors.lastname: Llewellyn
authors.forename: Helen
authors.initials: H
authors.lastname: Leonard
mesh_terms: D000203:Activities of Daily Living; D000328:Adult; D001315:Australia; D003858:Dependency, Psychological; D004185:Disability Evaluation; D006233:Persons with Disabilities; D004314:Down Syndrome / Q000523:psychology* / Q000534:rehabilitation; D005260:Female; D006801:Humans; D038801:International Classification of Diseases; D007407:Interviews as Topic; D008297:Male; D009035:Mothers / Q000523:psychology*; D036301:Qualitative Research; D011788:Quality of Life; D015518:Rett Syndrome / Q000523:psychology* / Q000534:rehabilitation; D012574:Schools; D012917:Social Adjustment; D012944:Social Support; D011795:Surveys and Questionnaires; D055815:Young Adult