Family information needs at childhood cancer treatment completion

Pediatr Blood Cancer. 2012 Apr;58(4):621-6. doi: 10.1002/pbc.23316. Epub 2011 Sep 9.


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.

Procedure: 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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Child
  • Child, Preschool
  • Family*
  • Female
  • Humans
  • Interviews as Topic*
  • Male
  • Middle Aged
  • Neoplasms / mortality
  • Neoplasms / therapy*
  • Patient Education as Topic*
  • Survivors*