Insights into the lives of families of children with neurodisabilities who have sleep problems

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First published online 04 October 2025.

Why this study was done

Children with neurodisabilities often have ongoing sleep problems. These sleep issues affect not only the children but also their families. There has been little research asking parents and caregivers to describe these experiences in their own words. This study aimed to understand what families go through, so that health services can give better, family-focused support.

What the study did

Researchers looked at written answers from 300 caregivers of children aged 2–18 years across Australia. All children had both a neurodisability and sleep problems. Families were recruited from sleep clinics and community groups. The researchers used thematic analysis to find common ideas and experiences in the caregivers’ responses.


What the study found

Caregivers described:


  1. Many types of sleep problems: Children had trouble falling asleep, staying asleep, and often woke up early or had night terrors. Other health issues, like pain or seizures, made things worse.
  2. Impact on the whole family: Poor sleep affected everyone. Nights were broken, evenings were stressful, and siblings were often disturbed.
  3. Extreme tiredness for caregivers: Many caregivers felt constantly exhausted, anxious, and unable to think clearly. Lack of sleep also affected their work and health.
  4. Constant trial and error: Families tried many different things—medications, routines, therapies—but nothing seemed to work well or for long.
  5. Need for more support: Caregivers wanted clearer advice and better help from health professionals. They were frustrated by long wait times, mixed messages, and limited access to services like respite care.

What this means

Families of children with neurodisabilities and sleep problems live with serious and ongoing sleep disruption. This affects their health, well-being, and daily life. Health services should treat sleep as an important part of neurodisability care and provide more consistent, practical, and family-focused support.

This study was conducted by:

Ms. Grace Langdon, Ms. Matilda O'Neil, Dr. Emma Cooke, Dr Fiona Hudson, Dr Laetitia Coles, Dr. Moya Vandeleur, Dr Karen Waters & Dr. Jasneek Chawla,

To read the full article, visit the journal.

Disclaimer: The QDRN has utilised generative AI to refine the wording of this plain language summary. All content has been checked for accuracy, appropriate tone and clarity and approved by the author.

First published online 04 October 2025.

Why this study was done

Children with neurodisabilities often have ongoing sleep problems. These sleep issues affect not only the children but also their families. There has been little research asking parents and caregivers to describe these experiences in their own words. This study aimed to understand what families go through, so that health services can give better, family-focused support.

What the study did

Researchers looked at written answers from 300 caregivers of children aged 2–18 years across Australia. All children had both a neurodisability and sleep problems. Families were recruited from sleep clinics and community groups. The researchers used thematic analysis to find common ideas and experiences in the caregivers’ responses.


What the study found

Caregivers described:


  1. Many types of sleep problems: Children had trouble falling asleep, staying asleep, and often woke up early or had night terrors. Other health issues, like pain or seizures, made things worse.
  2. Impact on the whole family: Poor sleep affected everyone. Nights were broken, evenings were stressful, and siblings were often disturbed.
  3. Extreme tiredness for caregivers: Many caregivers felt constantly exhausted, anxious, and unable to think clearly. Lack of sleep also affected their work and health.
  4. Constant trial and error: Families tried many different things—medications, routines, therapies—but nothing seemed to work well or for long.
  5. Need for more support: Caregivers wanted clearer advice and better help from health professionals. They were frustrated by long wait times, mixed messages, and limited access to services like respite care.

What this means

Families of children with neurodisabilities and sleep problems live with serious and ongoing sleep disruption. This affects their health, well-being, and daily life. Health services should treat sleep as an important part of neurodisability care and provide more consistent, practical, and family-focused support.

This study was conducted by:

Ms. Grace Langdon, Ms. Matilda O'Neil, Dr. Emma Cooke, Dr Fiona Hudson, Dr Laetitia Coles, Dr. Moya Vandeleur, Dr Karen Waters & Dr. Jasneek Chawla,

To read the full article, visit the journal.

Disclaimer: The QDRN has utilised generative AI to refine the wording of this plain language summary. All content has been checked for accuracy, appropriate tone and clarity and approved by the author.