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Adolescent and young adult cancer survivors' perceptions of participating in a survey - Ethical and methodological considerations
Institute of Clinical Sciences, Department of Paediatrics, Sahlgrenska Academy, University of Gothenburg, Sweden.
Department of Oncology, Division of Clinical Cancer Epidemiology, Sahlgrenska Academy, University of Gothenburg, Sweden.
Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.ORCID iD: 0000-0001-8596-6020
Department of Oncology, Division of Clinical Cancer Epidemiology, Sahlgrenska Academy, University of Gothenburg, Sweden.
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2019 (English)In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 39, p. 55-61Article in journal (Refereed) Published
Abstract [en]

PURPOSE: The aim of this study was to understand patient-reported perception of participation in a population-based web-survey focusing on sensitive issues for adolescent and young adult cancer survivors.

METHOD: A population-based web survey for adolescent and young adult cancer survivors including a matched control group. Adolescent and young adult cancer survivors from the population-based Swedish National Cancer Registry from four of the six register holders at Regional Cancer Centers in Sweden. Controls were randomly identified from the Swedish National Population registry, from the same register holders.

RESULT: Of 729 eligible participants, 540 completed the survey i.e. 74% participation rate. The study population included 285 adolescent and young adult cancer survivors and 255 matched controls. None of the participants answered that the survey had a very negative impact on them and a minority of 43 (7.9%) of the 540 responded that they were mildly negatively affected by their participation in the study. There was a no significant difference between patients and controls regarding the negative effect of the participation (p = 0.29). Positive experiences of participating in the study were widely expressed and most participants (95%) found the study valuable.

CONCLUSIONS: These findings suggest that the benefits clearly outweigh the risks when adolescent and young adult cancer survivors participate in surveys including sensitive and trauma-related aspects, given that the study design is ethically sound and participants are approached carefully. We also present a modified ethical protocol for epidemiological surveys on adolescents and young adult cancer survivors.

Place, publisher, year, edition, pages
Elsevier, 2019. Vol. 39, p. 55-61
Keywords [en]
Adolescent and young adult, Cancer survivor, Ethics, Methodological considerations, Survey
National Category
Cancer and Oncology
Identifiers
URN: urn:nbn:se:hj:diva-43454DOI: 10.1016/j.ejon.2019.02.001ISI: 000462419500008PubMedID: 30850139Scopus ID: 2-s2.0-85061357940OAI: oai:DiVA.org:hj-43454DiVA, id: diva2:1304039
Available from: 2019-04-11 Created: 2019-04-11 Last updated: 2019-04-11Bibliographically approved

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