A population-based nationwide study of parents' perceptions of a questionnaire on their child's death due to cancer

Lancet. 2004;364(9436):787-9. doi: 10.1016/S0140-6736(04)16939-0.


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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Attitude
  • Attitude to Death
  • Bereavement*
  • Child
  • Data Collection
  • Ethics, Research*
  • Female
  • Humans
  • Interviews as Topic
  • Male
  • Parents / psychology*
  • Pilot Projects
  • Surveys and Questionnaires*
  • Sweden