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Bereaved siblings' perception of participating in research: A nationwide study
Karolinska institutet, Sophiahemmet högskola.
Göteborgs universitet, Karolinska institutet.
Göteborgs universitet, Karolinska institutet.
Karolinska institutet, Sophiahemmet högskola, Göteborgs universitet.ORCID iD: 0000-0002-8185-781X
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.

Place, publisher, year, edition, pages
2013. Vol. 22, no 2, 411-416 p.
Keyword [en]
Cancer, Oncology, Bereavement, Siblings, Research ethics
National Category
Other Medical Sciences not elsewhere specified
Identifiers
URN: urn:nbn:se:esh:diva-5127DOI: 10.1002/pon.2105PubMedID: 22170857OAI: oai:DiVA.org:esh-5127DiVA: diva2:910077
Available from: 2016-03-08 Created: 2016-03-08 Last updated: 2016-03-08Bibliographically approved

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