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Bereaved siblings' perception of participating in research: a nationwide study
Sophiahemmet University.
Sophiahemmet University.
2013 (English)In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 22, no 2, 411-416 p.Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: The objective of the present study is to examine bereaved siblings' perception of research participation. METHODS: A Swedish nationwide study on avoidable and modifiable health care-related factors in paediatric oncology among bereaved siblings who lost a brother or sister to cancer between the years 2000 and 2007 was conducted. Data are presented as proportions, and the differences between groups were statistically tested at the 5% significant level using Fisher's exact test. RESULTS: Out of 240 eligible siblings, 174 responded (73 %). None of the siblings (0/168) thought their participation would affect them negatively in the long term. However, 13% (21/168) stated it was a negative experience to fill out the questionnaire, whereas 84% (142/169) found it to be a positive experience. Women were more likely to report their participation as positive in a long-term perspective compared with men (p = 0.018). CONCLUSIONS: None of the bereaved siblings in this Swedish nationwide study anticipated any long-term negative effect from their research participation. A majority reported it as positive to revisit their needs and experiences throughout their brother or sister's illness and death 2-9 years following the loss. We believe that the stepwise approach used in this study contributed to the high acceptance. Copyright © 2011 John Wiley & Sons, Ltd.

Place, publisher, year, edition, pages
2013. Vol. 22, no 2, 411-416 p.
Keyword [en]
Cancer, Oncology, Bereavement, Siblings, Research ethics
National Category
Nursing
Identifiers
URN: urn:nbn:se:shh:diva-1170DOI: 10.1002/pon.2105PubMedID: 22170857OAI: oai:DiVA.org:shh-1170DiVA: diva2:565572
Available from: 2012-11-07 Created: 2012-11-07 Last updated: 2014-09-11Bibliographically approved

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CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • harvard1
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
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  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
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