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A population-based nationwide study of parents' perceptions of a questionnaire on their child's death due to cancer
Karolinska institutet.ORCID iD: 0000-0002-8185-781X
Karolinska institutet.
Karolinska institutet.
Karolinska institutet.
2004 (English)In: The Lancet, ISSN 0140-6736, E-ISSN 1474-547X, Vol. 364, no 9436, p. 787-789Article in journal (Refereed) Published
Abstract [en]

A proposed nationwide postal questionnaire to Swedish parents who had lost a child due to cancer between 1992 and 1997 was denied approval by the local ethics committee. However, a pilot study to assess the harm and benefit of the questionnaire was approved. 95% of parents found the pilot study valuable; thus, we were allowed to proceed with the main study, which consisted of 129 questions about the child's care and death and five about the parents' perceptions of the study. 423 (99%) parents found the investigation valuable, 285 (68%) were positively affected, and 123 (28%) were negatively affected (10 [2%] of whom, very much). Although the numerical data cannot be directly translated to ethical conclusions, they can provide guidance for future ethical decisions.

Place, publisher, year, edition, pages
2004. Vol. 364, no 9436, p. 787-789
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Other Medical Sciences not elsewhere specified
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URN: urn:nbn:se:esh:diva-5084DOI: 10.1016/S0140-6736(04)16939-0PubMedID: 15337406OAI: oai:DiVA.org:esh-5084DiVA, id: diva2:905286
Available from: 2016-02-22 Created: 2016-02-22 Last updated: 2020-06-03Bibliographically approved

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Kreicbergs, Ulrika

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