title: Emotional Experiences Among Siblings of Children With Rare Disorders.
abstract: OBJECTIVE
  This research aimed to provide new knowledge about the emotional experiences of siblings of children with rare disorders.
  
  
  METHODS
  Qualitative thematic analysis was conducted based on videotapes of 11 support groups for 58 siblings aged 7-17 years (Mage = 11.4 years, SD = 2.4) of children with rare disorders.
  
  
  RESULTS
  Participants described contradictory emotions in three main contexts: (1) implications of the disorder (knowledge, medical issues, prognosis); (2) consequences for family life (practical implications, limitations of the child with disorder, perspectives on the sibling relationship); and (3) consequences for social life (reflections about (ab)normality, reactions from others). Passive coping strategies were frequently described relative to active coping strategies. An emerging dilemma for participants was hiding versus sharing emotional experiences.
  
  
  CONCLUSIONS
  Siblings' emotional experiences are characterized by diverse and contradictory feelings. Interventions to promote emotional health in siblings of children with rare disorder should address this complexity.
authors.affiliation: Department of Psychology, University of Oslo and yngvild.haukeland@psykologi.uio.no.
authors.forename: Yngvild B
authors.initials: YB
authors.lastname: Haukeland
authors.affiliation: Department of Psychology, University of Oslo and Frambu Resource Center for Rare Disorders.
authors.forename: Krister W
authors.initials: KW
authors.lastname: Fjermestad
authors.affiliation: Department of Psychology, University of Oslo and.
authors.forename: Svein
authors.initials: S
authors.lastname: Mossige
authors.affiliation: Frambu Resource Center for Rare Disorders.
authors.forename: Torun M
authors.initials: TM
authors.lastname: Vatne
mesh_terms: D000223:Adaptation, Psychological / Q000502:physiology*; D000293:Adolescent; D002648:Child; D004644:Emotions / Q000502:physiology*; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D036301:Qualitative Research; D035583:Rare Diseases / Q000523:psychology*; D012801:Sibling Relations; D035781:Siblings / Q000523:psychology*
keywords: coping strategies; emotional experience; qualitative analysis; rare disorders; siblings