title: Siblings' experiences of their brother's or sister's cancer death: a nationwide follow-up 2-9 years later.
abstract: OBJECTIVE
  The aim of this study was to examine siblings' experiences of their brother's or sister's cancer death and if these experiences influenced levels of anxiety 2-9 years later.
  
  
  METHODS
  This nationwide survey was conducted in Sweden in 2009. All siblings who had a brother/sister who was diagnosed with cancer before the age of 17 years and who died before the age of 25 years during 2000-2007 were invited. Of those, 174 siblings participated (participation rate: 73%). Mixed data from the survey about the siblings' experiences of death were included as well as data from the Hospital Anxiety and Depression Scale. To examine the experiences, descriptive statistics and content analysis were used. Mann-Whitney U-test was conducted to investigate if the experiences influenced anxiety 2-9 years later.
  
  
  RESULTS
  The siblings reported poor knowledge and experienced a lack of communication about their brother's/sister's death, for example, about the time frame, bodily changes near death, and about their own experiences. Siblings who reported that no one talked with them about what to expect when their brother/sister was going to die reported higher levels of anxiety 2-9 years after the loss. Seventy percent reported that they witnessed their brother/sister suffering in the last hours in life. Many of those who were not present during the illness period and at the time of death expressed regret.
  
  
  CONCLUSIONS
  It is important to prepare siblings for their brother's/sister's illness and death as it may decrease anxiety and regrets later on.
authors.affiliation: Department of Women's and Children's Health, The Childhood Cancer Research Unit, Karolinska Institute, Stockholm, Sweden.|School of Education, Health and Society, Dalarna University, Falun, Sweden.
authors.forename: Malin
authors.initials: M
authors.lastname: Lövgren
authors.affiliation: Centre for Research Ethics and Bioethics, Uppsala University, Uppsala, Sweden.|Oncological Unit, Visby Lasarett, Visby, Sweden.
authors.forename: Li
authors.initials: L
authors.lastname: Jalmsell
authors.affiliation: School of Education, Health and Society, Dalarna University, Falun, Sweden.
authors.forename: Alexandra
authors.initials: A
authors.lastname: Eilegård Wallin
authors.affiliation: Department of Oncology-Pathology, Karolinska University Hospital, Stockholm, Sweden.|Department of Oncology, The Sahlgrenska Academy, Gothenburg, Sweden.
authors.forename: Gunnar
authors.initials: G
authors.lastname: Steineck
authors.affiliation: Department of Women's and Children's Health, The Childhood Cancer Research Unit, Karolinska Institute, Stockholm, Sweden.|Ersta Sköndal University College, Palliative Research Centre, Stockholm, Sweden.
authors.forename: Ulrika
authors.initials: U
authors.lastname: Kreicbergs
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D001007:Anxiety / Q000523:psychology*; D001601:Bereavement; D003643:Death; D004644:Emotions; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008016:Life Change Events; D008297:Male; D009369:Neoplasms / Q000401:mortality / Q000523:psychology*; D011569:Psychiatric Status Rating Scales; D035781:Siblings / Q000523:psychology*; D011795:Surveys and Questionnaires; D013548:Sweden