title: Mother-caregiver expectations for function among survivors of childhood brain tumors.
abstract: OBJECTIVE
  Children diagnosed with brain tumors increasingly survive to adulthood, although they do so with needs often requiring continued parental caregiving. We sought to describe the nature of caregivers' expectations about survivors' function and how expectations connect to ongoing management and decision-making.
  
  
  METHODS
  Forty-five qualitative interviews with mother-caregivers were conducted and coded for themes related to expectations for their adolescent/young adult children living post-childhood brain tumors.
  
  
  RESULTS
  Five main themes emerged as integral to mother-caregiver expectations: realizing a difference in the survivor, noticing limitations to independence in the survivor, memories of learning about clinical prognoses as understood from consent meetings and education, managing these realizations, and acknowledging unresolved challenges.
  
  
  CONCLUSIONS
  Caregiver expectations are influenced by both initial clinical interactions and contemporary family dynamics and require individual- and family-specific survivorship planning. As caregiver expectations can influence management behaviors that impact outcomes and possibly independence, implications for clinician-caregiver shared decision-making are substantial.
authors.affiliation: Center for Bioethics, Urban Health, and Policy, Lewis Katz School of Medicine, Temple University, 3440 North Broad Street, Suite 200, Philadelphia, PA, 19140, USA. em.rabelais@gmail.com.|The Children's Hospital of Philadelphia, 34th and Civic Center Boulevard, Philadelphia, PA, 19104, USA. em.rabelais@gmail.com.
authors.forename: Em
authors.identifier: http://orcid.org/0000-0002-1646-4139
authors.initials: E
authors.lastname: Rabelais
authors.affiliation: The Children's Hospital of Philadelphia, 34th and Civic Center Boulevard, Philadelphia, PA, 19104, USA.|School of Medicine, University of Pennsylvania, 3400 Civic Center Boulevard, Building 421, Philadelphia, PA, 19104, USA.
authors.forename: Lamia P
authors.initials: LP
authors.lastname: Barakat
authors.affiliation: School of Medicine, University of Pennsylvania, 3400 Civic Center Boulevard, Building 421, Philadelphia, PA, 19104, USA.|School of Nursing, University of Pennsylvania, 418 Curie Boulevard, Philadelphia, PA, 19104, USA.
authors.forename: Connie M
authors.initials: CM
authors.lastname: Ulrich
authors.affiliation: Center for Bioethics, Urban Health, and Policy, Lewis Katz School of Medicine, Temple University, 3440 North Broad Street, Suite 200, Philadelphia, PA, 19140, USA.
authors.forename: Nora L
authors.initials: NL
authors.lastname: Jones
authors.affiliation: School of Nursing, University of Pennsylvania, 418 Curie Boulevard, Philadelphia, PA, 19104, USA.
authors.forename: Janet A
authors.initials: JA
authors.lastname: Deatrick
mesh_terms: D000293:Adolescent; D000328:Adult; D017668:Age of Onset; D000368:Aged; D001932:Brain Neoplasms / Q000453:epidemiology / Q000523:psychology / Q000534:rehabilitation; D017028:Caregivers / Q000523:psychology*; D002648:Child; D003657:Decision Making; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009035:Mothers / Q000523:psychology*; D010465:Perception; D017741:Survivors; D055815:Young Adult
keywords: Adolescent/young adult survivors; Communication; Decision-making; Oncology; Qualitative approaches