title: Bereaved siblings' perception of participating in research--a nationwide study.
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.
authors.affiliation: Department of Women's and Children's Health, Childhood Cancer Research Unit, Karolinska Institutet, Stockholm, Sweden. Alexandra.Eilegard@ki.se
authors.forename: Alexandra
authors.initials: A
authors.lastname: Eilegård
authors.forename: Gunnar
authors.initials: G
authors.lastname: Steineck
authors.forename: Tommy
authors.initials: T
authors.lastname: Nyberg
authors.forename: Ulrika
authors.initials: U
authors.lastname: Kreicbergs
mesh_terms: D000328:Adult; D001294:Attitude to Health; D001601:Bereavement; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D009369:Neoplasms; D035842:Research Subjects / Q000523:psychology*; D012737:Sex Factors; D035781:Siblings / Q000523:psychology*; D011795:Surveys and Questionnaires; D013548:Sweden; D055815:Young Adult