title: A new reality: long-term survivorship with a malignant brain tumor.
abstract: OBJECTIVE
  To explore the survivor experience of adults who have been diagnosed three years or longer with a primary malignant brain tumor (PMBT).
  
  
  METHODS
  Qualitative using a biographical narrative approach.
  
  
  METHODS
  Six sites across the United States.
  
  
  METHODS
  Survivors of PMBTs (N = 35) and their family caregivers (N = 35).
  
  
  METHODS
  Using a semistructured interview guide, survivors and caregivers were interviewed individually about their lives before and since the PMBT diagnosis. Thematic analysis was performed to identify themes.
  
  
  RESULTS
  Stability in survivor lives disintegrated as a result of the changes experienced related to the tumor and its treatment. Those changes were profound and ultimately contributed to multiple losses in key areas of their lives. Over time, living with the diagnosis and its consequences required survivors and their caregivers to adapt to the new reality of their lives. Through the process of becoming a survivor, individuals were able to take back control of their lives. Adaptation required survivors to use internal and external resources as ways of coping with their new reality.
  
  
  CONCLUSIONS
  People with PMBTs require support as they adapt to losses and changes that impact their lives. Assessment of specific changes that impact survivors' lives may be useful in guiding type of support given. Symptom management and mobilization of internal and external resources may lessen the life-changing impact.
  
  
  CONCLUSIONS
  Nurses should capture symptom meaning during assessments and expand assessments to include social support systems. Instituting measures that facilitate survivor independence may lessen the impact of disability. The significance of symptom worsening over time requires additional research.
  
  
  CONCLUSIONS
  Restoring self-worth and taking control of their lives are critical concerns for survivors of PMBTs.
authors.affiliation: College of Nursing, University of California, San Francisco, USA.
authors.forename: Mary Pat
authors.initials: MP
authors.lastname: Lovely
authors.forename: Christina
authors.initials: C
authors.lastname: Stewart-Amidei
authors.forename: Margaretta
authors.initials: M
authors.lastname: Page
authors.forename: Kathleen
authors.initials: K
authors.lastname: Mogensen
authors.forename: Jean
authors.initials: J
authors.lastname: Arzbaecher
authors.forename: Kathleen
authors.initials: K
authors.lastname: Lupica
authors.forename: Mary Ellen
authors.initials: ME
authors.lastname: Maher
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D001932:Brain Neoplasms / Q000451:nursing* / Q000523:psychology*; D005260:Female; D006801:Humans; D008016:Life Change Events; D008297:Male; D008875:Middle Aged; D033262:Narration; D009859:Oncology Nursing / Q000379:methods*; D036301:Qualitative Research; D017741:Survivors / Q000523:psychology*