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Parents' Experiences of Having a Child with Down Syndrome and Sleep Difficulties

Jasneek K Chawla1,2, Emma Cooke2, Maria Carmen Miguel2

  • 1Department of Paediatric Respiratory & Sleep Medicine, Queensland Children's Hospital, Brisbane, Australia.

Behavioral Sleep Medicine
|November 11, 2022
PubMed

Insights

Parents of children with Down syndrome (DS) often normalize sleep problems, impacting wellbeing. Healthcare professionals must proactively address these issues, recognizing families may need prompting to report concerns.

Area of Science:

  • Pediatric Sleep Medicine
  • Down Syndrome Research
  • Family Health

Background:

  • Sleep disorders are common in children with Down syndrome (DS).
  • Access to appropriate sleep treatment remains a significant challenge for these families.
  • Understanding family and healthcare experiences is crucial for improving care.

Purpose of the Study:

  • To explore the lived experiences of families raising a child with Down syndrome and sleep difficulties.
  • To investigate the healthcare experiences of these families regarding sleep issues.
  • To identify areas for practice improvement in pediatric sleep care for children with DS.

Main Methods:

  • Conducted semi-structured interviews with 34 parents (30 mothers, 4 fathers) of children with Down syndrome.
  • Utilized open-ended questions focusing on sleep, family dynamics, and healthcare interactions.
  • Employed a reflexive Thematic Analysis to interpret the qualitative data.

Main Results:

  • Parents frequently normalized sleep difficulties, viewing them as a typical aspect of raising a child with a disability.
  • Sleep disruption was acknowledged to have pervasive negative impacts on family wellbeing and dynamics.
  • Parents reported encountering inadequate and insensitive care, with healthcare professionals sometimes normalizing sleep problems, leading to suboptimal treatment and missed referrals.

Conclusions:

  • The normalization of sleep difficulties by both parents and healthcare professionals obscures their detrimental and treatable nature.
  • Healthcare professionals need increased awareness regarding the importance of proactively addressing pediatric sleep issues.
  • Recognizing families' normalization strategies and prompting them to voice concerns are essential for effective intervention.
Abstract

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