Siblings' experiences of sleep disruption in families with a child with Down syndrome

Abstract

OBJECTIVE: Adverse effects of sleep disruption are identified in parents who live with a child with Down Syndrome (DS), yet there is no research on siblings' experiences. This study addresses this knowledge gap. DESIGN: A qualitative research study using semi-structured interviews to understand the experiences of siblings of a child with DS and sleep difficulties from the perspectives of parents and siblings. PARTICIPANTS: Eleven siblings aged 5-15 years old, and 11 parents, from 8 families with a child with DS in Australia. METHODS: Semi-structured sibling interviews explored what it was like to have a sibling with DS and sleep difficulties; the participant's own sleep; how their sleep affected how they felt during the day; how sleep impacted their family; and advice that they would give to other siblings. Parent interviews included similar topics; here we report on excerpts in which parents reference siblings. Interviews were audio recorded, transcribed verbatim, and analyzed using a reflexive thematic analysis. RESULTS: Siblings and parents acknowledge sleep disruption for siblings; yet sleep disruption is normalized, viewed with acceptance and inevitability. Siblings report adverse effects from sleep disruption, view sleep in a relational way, and cope with sleep disruption. Parents can underestimate siblings' sleep disruption and are uncertain whether siblings' symptoms result from sleep disruption or other causes. CONCLUSIONS: Siblings of a child with DS experience sleep disruption and may be at risk of developing long-term health problems without focused support.