O017 Parents’ experiences of having a child with Down Syndrome and sleep difficulties

Abstract

Abstract Introduction This qualitative study that investigates parents’ experiences of having a child with Down Syndrome (DS) and sleep difficulties is a part of a broader mixed-method study entitled Sleep Difficulties in Children with Down Syndrome: An Evaluation of Parent/Carer and Family Quality of Life. Methods We conducted semi-structured interviews with 26 parents (fathers n = 4 and mothers n = 22), and reflexive Thematic Analysis (TA) was operationalised for data analysis. The interviews covered the following key topics: DS diagnosis; timeline of their child’s sleep patterns and difficulties; implications for parental sleep, day-time function, and well-being; family dynamics; and access to supports. Results Most participants described negative experiences at time of diagnosis, including not feeling listened to, and receiving inconsistent, insensitive and inadequate information and/or treatment. Most strikingly, no parents recall receiving sleep specific information. Most participants described their child’s sleep difficulties affecting their own sleep, day-time function and family dynamics, yet they commonly normalised these experiences. Such normalisation was a recurring theme across their experiences of having a child with DS and is contextualised by their accounts of resisting prejudiced attitudes towards their child since diagnosis. Discussion This is the first qualitative study to investigate parents’ experiences of having a child with DS and sleep difficulties. Implications include professional development for health care workers focusing on sleep as a significant comorbidity for these children, and awareness of families’ tendencies to normalise their experiences when delivering care.