Family information needs at childhood cancer treatment completion

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.