Family information needs at childhood cancer treatment completion

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.

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.

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.

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.