Bereaved siblings' perception of participating in research—a nationwide study

Authors

  • Alexandra Eilegård,

    Corresponding author
    1. Sophiahemmet University College, Stockholm, Sweden
    2. 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
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  • Gunnar Steineck,

    1. Department of Oncology Pathology, Sahlgrenska Academy, Division of Clinical Cancer Epidemiology, Gothenburg, Sweden
    2. Department of Oncology Pathology, Karolinska Institutet, Division of Clinical Cancer Epidemiology, Stockholm, Sweden
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  • Tommy Nyberg,

    1. Department of Oncology Pathology, Sahlgrenska Academy, Division of Clinical Cancer Epidemiology, Gothenburg, Sweden
    2. Department of Oncology Pathology, Karolinska Institutet, Division of Clinical Cancer Epidemiology, Stockholm, Sweden
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  • Ulrika Kreicbergs

    1. Department of Women's and Children's Health, Childhood Cancer Research Unit, Karolinska Institutet, Stockholm, Sweden
    2. Sophiahemmet University College, Stockholm, Sweden
    3. Department of Oncology Pathology, Sahlgrenska Academy, Division of Clinical Cancer Epidemiology, Gothenburg, Sweden
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Correspondence to: Division of Clinical Cancer Epidemiology Z5:U1, Karolinska University Hospital, SE-171 76 Stockholm, Sweden. E-mail: Alexandra.Eilegard@ki.se

Abstract

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.

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