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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)

Authors: Bänziger, Julia; Ilic, Anica; Diesch‑Furlanetto, Tamara; von Bueren, André O.; Sommer, Grit; Michel, Gisela; Hendriks, Manya Jerina;

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)

Abstract

Abstract 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.

Country
Switzerland
Keywords

Male, Adult, Parents, Cancer Survivors / psychology, Mothers / psychology, Aftercare / psychology, Mothers, Aftercare, 618, Fathers, Young Adult, Cancer Survivors, Long-term, Neoplasms, Surveys and Questionnaires, Humans, Parents / psychology, Child, Motivation, Neoplasms / therapy, Neoplasms / psychology, Research, Follow-up, Cohort, Social Support, Middle Aged, Fathers / psychology, Adult Children, Health promotion, Female, Childhood cancer, Switzerland, Follow-Up Studies

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    This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
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selected citations
These citations are derived from selected sources.
This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Citations provided by BIP!
popularity
This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
BIP!Popularity provided by BIP!
influence
This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Influence provided by BIP!
impulse
This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
BIP!Impulse provided by BIP!
0
Average
Average
Average
Green
hybrid
Related to Research communities
Cancer Research