title: A population-based nationwide study of parents' perceptions of a questionnaire on their child's death due to cancer.
abstract: 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.
authors.affiliation: Clinical Cancer Epidemiology, Department of Oncology and Pathology, Karolinska Institutet, Z6:01 Karolinska Hospital, SE-171 76 Stockholm, Sweden.
authors.forename: Ulrika
authors.initials: U
authors.lastname: Kreicbergs
authors.forename: Unnur
authors.initials: U
authors.lastname: Valdimarsdóttir
authors.forename: Gunnar
authors.initials: G
authors.lastname: Steineck
authors.forename: Jan-Inge
authors.initials: JI
authors.lastname: Henter
mesh_terms: D001290:Attitude; D001293:Attitude to Death; D001601:Bereavement; D002648:Child; D003625:Data Collection; D032984:Ethics, Research; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D010290:Parents / Q000523:psychology*; D010865:Pilot Projects; D011795:Surveys and Questionnaires; D013548:Sweden