title: Family members' retrospective stories of the treatment stage of an adolescent or young adult who subsequently died of cancer.
abstract: BACKGROUND
  Adolescents and young adults (AYAs) with cancer have been recognized as being disadvantaged within the present healthcare system. This article is part of a major study that was motivated by the principal researcher's own experience of her 17-year-old son dying of cancer and from current literature that highlights the lack of support and understanding of AYAs and their families.
  
  
  OBJECTIVE
  This article aimed to uncover from the stories of family members the experience after the treatment of an adolescent or young adult family member (aged 13-23 years) who subsequently died.
  
  
  METHODS
  Narrative inquiry was determined to be the appropriate methodology for this study. The participants were a self-selected purposeful sample of 26 family members whose narratives spoke of experience of having an AYA family member live with and die of cancer.
  
  
  RESULTS
  The meta-narrative of the families' stories in the treatment stage resulted in 6 themes. This article provides the insights of experience of the family members within the treatment stage. The family members speak of a health system unable to respond to the AYA and family member's needs and the suffering sacrifice and courage of the AYAs and the family members.
  
  
  CONCLUSIONS
  There is evidence that AYAs and family members are lost in the system, with minimum understanding or support for this unique group of people.
  
  
  CONCLUSIONS
  Further research is required to assist the development of evidence-based best practice models of care for AYAs and their families.
authors: School of Health and Human Sciences, Southern Cross University, Lismore, New South Wales, Australia.
authors: Janet A
authors: JA
authors: Barling
authors: John
authors: J
authors: Stevens
authors: Kierrynn M
authors: KM
authors: Davis
mesh_terms: D000293:Adolescent; D001315:Australia; D005190:Family / Q000523:psychology; D005260:Female; D006301:Health Services Needs and Demand / Q000592:standards; D006801:Humans; D007297:Inpatients; D009369:Neoplasms / Q000401:mortality / Q000451:nursing* / Q000523:psychology / Q000628:therapy; D063545:Personal Narratives as Topic; D012494:Sampling Studies; D011795:Surveys and Questionnaires; D055815:Young Adult