Bereaved siblings' perception of participating in research—a nationwide study
Article first published online: 14 DEC 2011
Copyright © 2011 John Wiley & Sons, Ltd.
Volume 22, Issue 2, pages 411–416, February 2013
How to Cite
Eilegård, A., Steineck, G., Nyberg, T. and Kreicbergs, U. (2013), Bereaved siblings' perception of participating in research—a nationwide study. Psycho-Oncology, 22: 411–416. doi: 10.1002/pon.2105
- Issue published online: 3 FEB 2013
- Article first published online: 14 DEC 2011
- Manuscript Accepted: 2 NOV 2011
- Manuscript Revised: 1 NOV 2011
- Manuscript Received: 16 MAY 2011
- Swedish Childhood Cancer Foundation
- Swedish Research Council
- Swedish Cancer Society
- Karolinska Institutet
- Sophiahemmet University College
- research ethics
The objective of the present study is to examine bereaved siblings' perception of research participation.
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.
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).
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.