title: Family information needs at childhood cancer treatment completion.
abstract: BACKGROUND
  Despite the recognized importance of information provision across the cancer trajectory, little research has investigated family information needs recently after childhood cancer. This mixed-methods, multiperspective, study explored the information needs of families of childhood cancer survivors in the first year post-treatment.
  
  
  METHODS
  In total, 112 semi-structured telephone interviews were conducted with 19 survivors (mean age 16.2 years, off treatment for ≤36 months), 44 mothers, 34 fathers, and 15 siblings. Interviews were analyzed inductively, line-by-line, using the framework of Miles and Huberman. Emergent themes were cross-tabulated by sample characteristics using QSR NVivo8.
  
  
  RESULTS
  Participant views were mixed regarding the need for a "finishing treatment review" with their oncologist (the primary information source for most families); however, many mothers (29/44) and fathers (17/34) and most siblings (14/15) reported receiving insufficient information post-treatment. Information regarding fertility and how to prepare for likely post-treatment challenges were the most cited unmet needs. Online support was ranked highest by survivors (mean score: 7/2/10) and siblings (7.4/10), whilst parents preferred an information booklet (often due to concerns about accessing accurate and relevant information from the Internet). While many participants reported feelings of isolation/loneliness, many were reluctant to attend face-to-face support groups/seminars.
  
  
  CONCLUSIONS
  Family members of survivors may experience the most acute unmet needs for information about fertility and in preparation for post-treatment challenges. However, provision of the correct amount of information at the right time for each family member during a highly stressful period remains clinically challenging.
authors: Centre for Children's Cancer and Blood Disorders, Sydney Children's Hospital (SCH), Randwick, New South Wales, Australia. c.wakefield@unsw.edu.au
authors: Claire E
authors: CE
authors: Wakefield
authors: Phyllis
authors: P
authors: Butow
authors: Catharine A K
authors: CA
authors: Fleming
authors: Gunar
authors: G
authors: Daniel
authors: Richard J
authors: RJ
authors: Cohn
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D005190:Family; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000401:mortality / Q000628:therapy*; D010353:Patient Education as Topic; D017741:Survivors