O038 Families’ Experiences of Having a Child/Sibling with Down Syndrome and Sleep Difficulties

Abstract

Abstract Introduction This qualitative study investigates the experiences of families of children with Down Syndrome (DS), with a focus on siblings’ experiences. Methods We conducted semi-structured interviews with 34 parents (fathers n=4 and mothers n=30), and ten siblings. Data analysis was informed by a sociological interpretivist approach and consisted of reflexive Thematic Analysis (TA) and Creative Analytical Practices. Interviews covered: what it was like to have a child/sibling with DS and sleep difficulties, and implications for their family members’ well-being, functioning, and sleep. Results Parents’ and siblings’ accounts had congruences and divergences; however, overall, there was consensus that siblings of children with DS encounter challenges that are often unnoticed. Parents feel guilty for not paying ‘enough’ attention to these children, and children report being bored during their sibling with DS’s medical appointments. Siblings sometimes deliver care to their sibling with DS during the night and provide emotional support to their parents. Siblings experienced sleep disruption, which they reported affecting their functioning at school, which parents had varying degrees of awareness of. Siblings dislike encountering prejudiced attitudes toward their siblings with DS in the community or at school. Discussion This is the first qualitative study to investigate families’ experiences of having a child/sibling with DS and sleep difficulties. Implications include raising health care workers’ awareness of i) the emotional and caring labour that siblings of children with DS engage in, and ii) potential of parents to misreport these children’s experiences, indicating a need for direct consultation with such children.