title: Adolescent and Young Adult Survivors of Childhood Brain Tumors: Life After Treatment in Their Own Words.
abstract: BACKGROUND
  To date, there are few studies that examine the perspectives of older survivors of childhood brain tumors who are living with their families in terms of their sense of self and their role in their families.
  
  
  OBJECTIVE
  The aim of this study was to describe how adolescent and young adult survivors of childhood brain tumors describe their health-related quality of life, that is, their physical, emotional, and social functioning.
  
  
  METHODS
  This qualitative descriptive study included a purposive sample of 41 adolescent and young adult survivors of a childhood brain tumor who live with their families. Home interviews were conducted using a semistructured interview guide. Directed content analytic techniques were used to analyze data using health-related quality of life as a framework.
  
  
  RESULTS
  This group of brain tumor survivors described their everyday lives in terms of their physical health, neurocognitive functioning, emotional health, social functioning, and self-care abilities. Overall, survivors struggle for normalcy in the face of changed functioning due to their cancer and the (late) effects of their treatment.
  
  
  CONCLUSIONS
  Neurocognitive issues seemed most compelling in the narratives. The importance of families went beyond the resources, structure, and support for functioning. Their families provided the recognition that they were important beings and their existence mattered to someone.
  
  
  CONCLUSIONS
  The value and complexity of care coordination were highlighted by the multifaceted needs of the survivors. Advocacy for appropriate and timely educational, vocational, and social support is critical as part of comprehensive cancer survivorship care.
authors.affiliation: Author Affiliations: Department of Nursing (Mss Hobbie, Ogle, and Reilly), Division of Oncology (Drs Barakat, Ginsberg, and Fisher), The Children's Hospital of Philadelphia, Perelman School of Medicine of the University of Pennsylvania University of Pennsylvania, School of Nursing (Ms Hobbie and Dr Deatrick), and Temple University School of Medicine (Dr Lucas), Philadelphia, Pennsylvania; and School of Nursing, University of Buffalo, New York (Dr Volpe).
authors.forename: Wendy L
authors.initials: WL
authors.lastname: Hobbie
authors.forename: Sue
authors.initials: S
authors.lastname: Ogle
authors.forename: Maureen
authors.initials: M
authors.lastname: Reilly
authors.forename: Lamia
authors.initials: L
authors.lastname: Barakat
authors.forename: Matthew S
authors.initials: MS
authors.lastname: Lucas
authors.forename: Jill P
authors.initials: JP
authors.lastname: Ginsberg
authors.forename: Michael J
authors.initials: MJ
authors.lastname: Fisher
authors.forename: Ellen M
authors.initials: EM
authors.lastname: Volpe
authors.forename: Janet A
authors.initials: JA
authors.lastname: Deatrick
mesh_terms: D000293:Adolescent; D000328:Adult; D001932:Brain Neoplasms / Q000451:nursing / Q000523:psychology* / Q000628:therapy; D005195:Family Relations / Q000523:psychology; D005260:Female; D006801:Humans; D008297:Male; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology*; D012944:Social Support; D017741:Survivors / Q000523:psychology* / Q000706:statistics & numerical data; D055815:Young Adult