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.

Keywords: coping strategies; emotional experience; qualitative analysis; rare disorders; siblings.