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Bereaved siblings' perception of participating in research--a nationwide study.
Department of Women's and Children's Health, Childhood Cancer Research Unit, Karolinska Institutet, Stockholm, Sweden ; Sophiahemmet University College, Stockholm, Sweden ; Department of Oncology Pathology, Karolinska Institutet, Division of Clinical Cancer Epidemiology, Stockholm, Sweden.ORCID iD: 0000-0002-6133-8975
Department of Oncology Pathology, Sahlgrenska Academy, Division of Clinical Cancer Epidemiology, Gothenburg, Sweden ; Department of Oncology Pathology, Karolinska Institutet, Division of Clinical Cancer Epidemiology, Stockholm, Sweden.
ology, Gothenburg, Sweden ; Department of Oncology Pathology, Karolinska Institutet, Division of Clinical Cancer Epidemiology, Stockholm, Sweden.
Department of Women's and Children's Health, Childhood Cancer Research Unit, Karolinska Institutet, Stockholm, Sweden ; Sophiahemmet University College, Stockholm, Sweden ; Department of Oncology Pathology, Sahlgrenska Academy, Division of Clinical Cancer Epidemiology, Gothenburg, Sweden.
2013 (English)In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 22, no 2, p. 411-6Article 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. 411-6
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:du-15107DOI: 10.1002/pon.2105ISI: 000314493700022PubMedID: 22170857OAI: oai:DiVA.org:du-15107DiVA, id: diva2:741775
Available from: 2014-08-29 Created: 2014-08-29 Last updated: 2017-12-05Bibliographically approved

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