How mothers and fathers support adult childhood cancer survivors: parental attitudes, involvement, and motivation toward long-term follow-up care (results from the Swiss Childhood Cancer Survivor Study – Parents)

Purpose: Many childhood cancer survivors (CCS) do not attend long-term follow-up (LTFU) care. We examined (1) the involvement of mothers and fathers, (2) their attitudes towards LTFU, (3) how they motivated their adult children to attend, (4) and parents' perceptions of the healthcare professionals involved and the decision to end LTFU care.

Methods: A population-based sample (Swiss Childhood Cancer Registry) of parents of long-term CCS (> 5 years post-diagnosis, ≥ 20 years at study) responded to a questionnaire. Multiple-choice and open-ended questions were analysed using descriptive statistics, chi2 comparisons, and qualitative content analyses.

Results: Of 302 families, 190 fathers (40.7%) and 276 mothers participated. One in four (26.1%) parents were involved in LTFU, providing medical, preventative/practical, and emotional support (mothers > fathers, p = 0.013). Parents of LTFU attenders were pleased with attendance (94.3%), providing them with reassurance about their child's health. Parents of non-attenders did not wish their child attended LTFU (74.7%), because of their perceptions (e.g., 'being cured'), respect for the child's decision, or the need to move on. Parents (53.5%) motivated attenders (mothers > fathers, p = 0.002) by talking about importance, helping to schedule, and reminding. General practitioners (64.3%) and adult oncologists (31.9%) most often provided LTFU. The decision to end LTFU was made by the treating physician (53.4%), survivors (18.4%), or shared decision-making (17.5%).

Conclusion: There is unused potential for parents to motivate their children to participate in LTFU. The variety of LTFU models can be difficult to navigate; thus, working to improve visibility and encouragement might help increase attendance.