title: Adult childhood cancer survivors' narratives of managing their health: the unexpected and the unresolved.
abstract: Currently, 80 % of children diagnosed with cancer will be cured. However, many of these survivors go on to develop long-term health problems or late effects related to their previous cancer and therapy and require varying degrees of lifelong follow-up care. The purpose of this study was to identify the different ways that adult survivors of childhood cancer manage their medical and psychological challenges.
  
  
  
  Data from in-depth interviews with 30 adult survivors of a childhood cancer (9 to 38 years after diagnosis, currently 22 to 43 years of age, 60 % women) were analyzed using qualitative, thematic narrative analysis methods.
  
  
  
  The survivors had not expected the medical, psychological, and social challenges that arose over time and that often remained unresolved. Five narrative themes revealed distinct ways that survivors managed their health challenges: (1) trying to forget cancer, (2) trusting the system to manage my follow-up care, (3) being proactive about my health, (4) stumbling from one problem to the next, and (5) struggling to find my way.
  
  
  
  Variation exists in the ways in which childhood cancer survivors frame their health, their perceived significance of health challenges, strategies used to manage health, interactions with healthcare professionals and the health system, and parental involvement.
  
  
  
  This research provides novel insights that can be used to inform the development of patient-centered health services that promote the assessment and tailoring of care to the diverse ways survivors enact their agency, as well as their psychoeducational coping styles, therapeutic relationship needs, and information needs.
authors.affiliation: School of Nursing, The University of British Columbia, T201-2211 Wesbrook Mall, Vancouver, BC, V6T 2B5, Canada. fuchsia.howard@ubc.ca.
authors.forename: A Fuchsia
authors.initials: AF
authors.lastname: Howard
authors.affiliation: Department of Radiation Oncology, BC Cancer Agency, Vancouver, BC, Canada.
authors.forename: Karen
authors.initials: K
authors.lastname: Goddard
authors.affiliation: Centre for Research on Inner City Health, St. Michael's Hospital, Toronto, ON, Canada.
authors.forename: Jason
authors.initials: J
authors.lastname: Tan de Bibiana
authors.affiliation: Division of Hematology/Oncology, BC Children's Hospital, Vancouver, BC, Canada.
authors.forename: Sheila
authors.initials: S
authors.lastname: Pritchard
authors.affiliation: Department of Surgery, The University of British Columbia, Vancouver, BC, Canada.
authors.forename: Robert
authors.initials: R
authors.lastname: Olson
authors.affiliation: School of Population and Public Health, The University of British Columbia, Vancouver, BC, Canada.
authors.forename: Arminee
authors.initials: A
authors.lastname: Kazanjian
mesh_terms: D000328:Adult; D005260:Female; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000401:mortality / Q000523:psychology*; D017741:Survivors / Q000523:psychology*; D055815:Young Adult
keywords: Childhood cancer survivor; Health services; Narrative research; Patient perspective; Qualitative
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