title: 'Well the Future, that is Difficult': A Hermeneutic Phenomenological Analysis Exploring the Maternal Experience of Parenting a Young Adult with a Developmental Disability.
abstract: BACKGROUND
  The predominant focus of extant literature exploring maternal experience of developmental disability has been stress, adaptation, efficacy of interventions and the burden of care. Most studies involve mothers of children, with scant attention given to what life is like later. This study qualitatively explores the experience of mothers of young adults (aged 19-28).
  
  
  METHODS
  Semi-structured interviews conducted with six women aged 48-60 were transcribed and analysed using interpretative phenomenological analysis.
  
  
  RESULTS
  Three themes illustrate how mothers are confronted with their adult children's continuing need for support and how a lack of trust in social care creates anxiety about the future, increasing awareness of mortality.
  
  
  CONCLUSIONS
  Vulnerability represents a useful concept for understanding these findings theoretically. Galvin & Todres' (2013) conceptual framework for the humanization of care provides the opportunity to prioritize the needs of individuals by highlighting dimensions of existence which confer meaning.
authors.affiliation: Department of Psychological Sciences, Birkbeck, University of London, London, UK.
authors.forename: Lisa A
authors.initials: LA
authors.lastname: Thackeray
authors.affiliation: Department of Psychological Sciences, Birkbeck, University of London, London, UK.
authors.forename: Virginia
authors.initials: V
authors.lastname: Eatough
mesh_terms: D000223:Adaptation, Psychological; D002658:Developmental Disabilities; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009035:Mothers / Q000523:psychology*; D016487:Parenting / Q000523:psychology*; D036301:Qualitative Research; D013315:Stress, Psychological / Q000523:psychology*; D055815:Young Adult
keywords: developmental disabilities; interpretative phenomenological analysis; mothers; young adults