title: Parental hope for children with advanced cancer.
abstract: BACKGROUND
  Previous work suggests that parents of children with cancer can remain hopeful despite receiving prognostic information, but we know little about what hope means to such parents, or the extent to which parents can feel hopeful even while facing the child's impending death.
  
  
  METHODS
  We audiotaped conversations between clinicians and parents of 32 children with relapsed or refractory cancer, and then interviewed parents about their hopes and expectations for their child.
  
  
  RESULTS
  Parent statements about prognosis in interviews mirrored those made by clinicians during discussions about the child's diagnosis with refractory or relapsed cancer. Clinicians used language referring to hope during these conversations but did not ask parents directly about their hopes. Parents expressed a range of hopes for their children, from hopes related to cure or treatment response, to quality of life, normalcy, and love and relationships for the child. For most parents, expectations about prognosis were not aligned with their hopes for the child; for example, many parents hoped for a cure and also reported that they did not believe cure was possible. Many parents were able to acknowledge this incongruence.
  
  
  CONCLUSIONS
  Parents accurately conveyed the reality of their child's serious condition in the setting of advanced cancer, and yet maintained hope. Hopes were not limited to hope for cure/treatment response. Clinicians should be encouraged to engage in direct conversations about hope with parents as a means to elicit realistic hopes that can help to focus the most meaningful plans for the child and family.
authors.affiliation: The Department of Pediatric Oncology and the Center for Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts;
authors.forename: Junne
authors.initials: J
authors.lastname: Kamihara
authors.affiliation: The Department of Pediatric Oncology and the Center for Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts;
authors.forename: Justin A
authors.initials: JA
authors.lastname: Nyborn
authors.affiliation: Oregon Health and Science University, Portland, Oregon; and.
authors.forename: Maura E
authors.initials: ME
authors.lastname: Olcese
authors.affiliation: The Department of Pediatric Oncology and the Center for Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts; Charles E. Schmidt College of Medicine, Florida Atlantic University, Boca Raton, Florida.
authors.forename: Taylor
authors.initials: T
authors.lastname: Nickerson
authors.affiliation: The Department of Pediatric Oncology and the Center for Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts; jennifer_mack@dfci.harvard.edu.
authors.forename: Jennifer W
authors.initials: JW
authors.lastname: Mack
mesh_terms: D000293:Adolescent; D001294:Attitude to Health; D002648:Child; D002675:Child, Preschool; D005260:Female; D065026:Hope; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D009369:Neoplasms; D010290:Parents / Q000523:psychology*
keywords: cancer; communication; end of life; hope; life-threatening illness; prognosis