title: Long-term psychosocial outcomes among bereaved siblings of children with cancer.
abstract: BACKGROUND
  The death of a child from cancer affects the entire family. Little is known about the long-term psychosocial outcomes of bereaved siblings.
  
  
  OBJECTIVE
  To describe 1) the prevalence of risky health behaviors, psychological distress, and social support among bereaved siblings and 2) potentially modifiable factors associated with poor outcomes.
  
  
  METHODS
  Bereaved siblings were eligible for this dual-center, cross-sectional, survey-based study if they were 16 years or older and their parents had enrolled in one of three prior studies about caring for children with cancer at the end of life. Linear regression models identified associations between personal perspectives before, during, and after the family's cancer experience and outcomes (health behaviors, psychological distress, and social support).
  
  
  RESULTS
  Fifty-eight siblings completed surveys (62% response rate). They were approximately 12 years bereaved, with a mean age of 26 years at the time of the survey (SD 7.8). Anxiety, depression, and illicit substance use increased during the year after their brother/sister's death but then returned to baseline. Siblings who reported dissatisfaction with communication, poor preparation for death, missed opportunities to say goodbye, and/or a perceived negative impact of the cancer experience on relationships tended to have higher distress and lower social support scores (P < 0.001-0.031). Almost all siblings reported that their loss still affected them; half stated that the experience impacted current educational and career goals.
  
  
  CONCLUSIONS
  How siblings experience the death of a child with cancer may impact their long-term psychosocial well-being. Sibling-directed communication and concurrent supportive care during the cancer experience and the year after the sibling death may mitigate poor long-term outcomes.
authors.affiliation: Seattle Children's Hospital, Seattle, Washington, USA; Fred Hutchinson Cancer Research Center, Seattle, Washington, USA; Treuman Katz Center for Pediatric Bioethics, Seattle, Washington, USA; University of Washington, Seattle, Washington, USA.
authors.forename: Abby R
authors.initials: AR
authors.lastname: Rosenberg
authors.affiliation: Department of Pain Medicine, Palliative Care and Integrative Medicine, Children's Hospitals and Clinics of Minnesota, Minneapolis, Minnesota, USA.
authors.forename: Andrea
authors.initials: A
authors.lastname: Postier
authors.affiliation: Department of Pain Medicine, Palliative Care and Integrative Medicine, Children's Hospitals and Clinics of Minnesota, Minneapolis, Minnesota, USA.
authors.forename: Kaci
authors.initials: K
authors.lastname: Osenga
authors.affiliation: Childhood Cancer Research Unit, Department of Women's and Children's Health, Karolinska Institute, Stockholm, Sweden; Sophiahemmet University, Stockholm, Sweden.
authors.forename: Ulrika
authors.initials: U
authors.lastname: Kreicbergs
authors.affiliation: Center for Outcomes and Policy Research, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.
authors.forename: Bridget
authors.initials: B
authors.lastname: Neville
authors.affiliation: Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts, USA; Institute for Clinical Effectiveness and Health Policy, Buenos Aires, Argentina.
authors.forename: Veronica
authors.initials: V
authors.lastname: Dussel
authors.affiliation: Center for Outcomes and Policy Research, Dana-Farber Cancer Institute, Boston, Massachusetts, USA; Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts, USA; Department of Medicine, Boston Children's Hospital, Boston, Massachusetts, USA. Electronic address: joanne_wolfe@dfci.harvard.edu.
authors.forename: Joanne
authors.initials: J
authors.lastname: Wolfe
mesh_terms: D000293:Adolescent; D000328:Adult; D001601:Bereavement; D002648:Child; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D008297:Male; D001523:Mental Disorders / Q000453:epidemiology; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology*; D015995:Prevalence; D012309:Risk-Taking; D035781:Siblings / Q000523:psychology*; D012944:Social Support; D013997:Time Factors; D055815:Young Adult
keywords: Bereavement; pediatric cancer; psychological distress; psychosocial outcomes; resilience; siblings; survivorship