title: Trajectory of parental hope when a child has difficult-to-treat cancer: a prospective qualitative study.
abstract: OBJECTIVE
  This prospective and longitudinal study was designed to further our understanding of parental hope when a child is being treated for a malignancy resistant to treatment over three time points during the first year after diagnosis using a qualitative approach to inquiry.
  
  
  METHODS
  We prospectively recruited parents of pediatric cancer patients with a poor prognosis who were treated in the Hematology/Oncology Program at a large children's hospital for this longitudinal grounded theory study. Parents were interviewed at three time points: within 3 months of the initial diagnosis, at 6 months, and at 9 months. Data collection and analysis took place concurrently using line-by-line coding. Constant comparison was used to examine relationships within and across codes and categories.
  
  
  RESULTS
  Two overarching categories defining hope as a positive inner source were found across time, but their frequency varied depending on how well the child was doing and disease progression: future-oriented hope and present-oriented hope. Under future-oriented hope, we identified the following: hope for a cure and treatment success, hope for the child's future, hope for a miracle, and hope for more quality time with child. Under present-oriented hope, we identified hope for day-to-day/moment-to-moment, hope for no pain and suffering, and hope for no complications.
  
  
  CONCLUSIONS
  For parents of children with a diagnosis of cancer with a poor prognosis, hope is an internal resource that can be present and future focused. These views fluctuated over time in response to changes in the child's well-being and disease progression.
authors.affiliation: Department of Public Health, Ben Gurion University of the Negev, Be'er Sheva, Israel.
authors.forename: L
authors.initials: L
authors.lastname: Granek
authors.forename: M
authors.initials: M
authors.lastname: Barrera
authors.forename: J
authors.initials: J
authors.lastname: Shaheed
authors.forename: D
authors.initials: D
authors.lastname: Nicholas
authors.forename: L
authors.initials: L
authors.lastname: Beaune
authors.forename: N
authors.initials: N
authors.lastname: D'Agostino
authors.forename: E
authors.initials: E
authors.lastname: Bouffet
authors.forename: B
authors.initials: B
authors.lastname: Antle
mesh_terms: D000293:Adolescent; D001294:Attitude to Health; D002648:Child; D002675:Child, Preschool; D018450:Disease Progression; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D009369:Neoplasms / Q000523:psychology* / Q000628:therapy; D010146:Pain; D010290:Parents / Q000523:psychology*; D011368:Professional-Family Relations; D011379:Prognosis; D011446:Prospective Studies; D036301:Qualitative Research; D012720:Severity of Illness Index
keywords: cancer; caregivers; longitudinal design; parental hope; pediatric oncology; qualitative methods