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Information needs in parents of long‐term childhood cancer survivors
Author(s) -
Vetsch Janine,
Rueegg Corina S.,
Gianinazzi Micòl E.,
Bergsträsser Eva,
von der Weid Nicolas X.,
Michel Gisela
Publication year - 2015
Publication title -
pediatric blood and cancer
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.116
H-Index - 105
eISSN - 1545-5017
pISSN - 1545-5009
DOI - 10.1002/pbc.25418
Subject(s) - medicine , information needs , childhood cancer , perception , cancer , family medicine , pediatrics , psychology , neuroscience , world wide web , computer science
Background Parents’ knowledge about cancer, treatment, potential late effects and necessary follow‐up is important to reassure themselves and motivate their child to participate in regular follow‐up. We aimed to describe (i) parents’ perception of information received during and after treatment; (ii) parents’ current needs for information today, and to investigate; and (iii) associations between information needs and socio‐demographic and clinical characteristics. Methods As part of the Swiss Childhood Cancer Survivor Study, a follow‐up questionnaire was sent to parents of survivors, diagnosed < 16 years and after 1990, and aged 11–17 years at study. We assessed parents’ perception of information received and information needs, concerns about consequences of the cancer and socio‐demographic information. Information on clinical data was available from the Swiss Childhood Cancer Registry. Results Of 309 eligible parents, 189 responded (67%; mean time since diagnosis: 11.3 years, SD = 2.5). Parents perceived to have received verbal information (on illness: verbal 91%, written 40%; treatment: verbal 88%, written 46%; follow‐up: verbal 85% written 27%; late effects: verbal 75%, written 19%). Many parents reported current information needs, especially on late effects (71%). The preferred source was written general (28%) or verbal information (25%), less favored was online information (12%). Information needs were associated with migration background ( P = 0.039), greater concerns about consequences of cancer ( P = 0.024) and no information received ( P = 0.035). Conclusion Parents reported that they received mainly verbal information. However, they still needed further information especially about possible late effects. Individual long‐term follow‐up plans, including a treatment summary, should be provided to each survivor, preferably in written format. Pediatr Blood Cancer 2015;62:859–866. © 2015 Wiley Periodicals, Inc.