Peer-reviewed article
O017 Parents’ experiences of having a child with Down Syndrome and sleep difficulties
Miguel M, Cooke E, Chawla J ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This qualitative study explored 26 parents' experiences of having a child with Down Syndrome who experiences sleep difficulties. Parents reported negative experiences at diagnosis, including inadequate information and no specific sleep guidance. Sleep difficulties in their children significantly affected parents' own sleep, day-time functioning, and family dynamics, though parents often normalized these challenges. The study highlights that health professionals need better training to recognize sleep as an important health issue in children with Down Syndrome and to provide appropriate support.
Key points
- Parents received inadequate, inconsistent, and insensitive information at time of Down Syndrome diagnosis, with no one recalling sleep-specific guidance
- Children's sleep difficulties directly affected parents' sleep quality, daytime function, and overall family dynamics
- Parents commonly normalized the negative impacts of sleep difficulties as part of having a child with Down Syndrome
- This is the first qualitative study specifically investigating parents' experiences of having a child with Down Syndrome and sleep difficulties
- Healthcare professionals need professional development to recognize sleep as a significant health issue and to provide family-centered care
Limitations
The study does not specify countries or geographical context. The sample is heavily skewed toward mothers (n=22) compared to fathers (n=4), which may not represent paternal experiences equally. The study documents parents' perceptions but does not measure actual child health outcomes or sleep metrics.
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.