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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, p. 411-416Article 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, p. 411-416
Keywords [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, id: diva2:910077
Available from: 2016-03-08 Created: 2016-03-08 Last updated: 2017-11-30Bibliographically approved

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