Barriers and Facilitators to Seeking Sleep Solutions for Children With Cerebral Palsy: A Qualitative Study
Sacha Petersen1,2,3, Dinah S Reddihough2,3,4, Sally Lima2,3,5
1School of Health and Biosciences, RMIT University, Bundoora, VIC, Australia.
Insights
Parents of children with cerebral palsy (CP) face significant challenges finding sleep solutions. Their children's unique needs are often unmet by available services, highlighting a need for better sleep care.
Area of Science:
- Pediatric Neurology
- Sleep Medicine
- Qualitative Research
Background:
- Sleep problems are prevalent in children with cerebral palsy (CP).
- This qualitative study follows a quantitative phase exploring sleep issues in children with CP.
- It focuses on parental experiences with sleep disturbance and seeking solutions.
Purpose of the Study:
- To explore the experiences and impact of sleep disturbance on parents of school-aged children with CP.
- To understand the process and challenges parents face when seeking sleep solutions.
- To identify barriers and facilitators in accessing sleep care for children with CP.
Main Methods:
- Conducted 19 semi-structured qualitative interviews with parents of children with CP (aged 6-12 years).
- Transcribed interview data verbatim.
- Utilized thematic analysis (Braun and Clarke) to identify key themes.
Main Results:
- Identified 7 themes, including children's needs not fitting standard services and sleep disturbance being a persistent issue.
- Parents reported significant challenges in sourcing effective sleep solutions.
- A key finding was that children with CP have distinct needs often not met by current systems.
Conclusions:
- Parents encounter substantial difficulties in obtaining effective sleep solutions for children with CP.
- Sleep is frequently deprioritized by parents and clinicians due to other pressing health concerns.
- Early sleep intervention is perceived as beneficial, and identified barriers/facilitators should inform clinical practice improvements.
Abstract:
Background: Published evidence to date suggests that sleep problems are common in children with cerebral palsy (CP). This qualitative study is a follow up to a previously published quantitative phase on the experience and impact of sleep problems in this population. Aims: The aim of this study was to explore the experience and impact of sleep disturbance and seeking of sleep solutions for parents of school aged children with CP. Materials and Methods: Semi-structured 19 qualitative interviews were conducted with parents of children with CP aged 6-12 years. Interview data were transcribed verbatim and the thematic analysis techniques by Braun and Clarke was used to identify themes. Results: Thematic analysis identified 7 themes: (1) My Child Doesn't Fit into the Box, (2) A Mother's Ears are Always On, (3) Sleep Disturbance is like Water Torture, (4) Sleep is One of Many Spot Fires, I Put it on the Backburner, (5) Luck, Money or Jumping Up and Down, (6) There is Never One Silver Bullet and (7) Help: The Earlier the Better. The key finding was that parents of children with CP often described their child's needs being distinct from what is provided by systems and services. Conclusion: Parents face significant challenges sourcing effective sleep solutions for their child with CP. Sleep is often not a priority for either the parent or the clinician as other health problems take precedence. Parents reflected that early sleep intervention for their child was or would have been helpful. The barriers and facilitators to sleep care identified in this study should be used to inform clinical change in care for children with CP. Sleep needs to be prioritized in healthcare for children.
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