For many families caring for a child with a brain injury, sleep is not simply a matter of bedtime routine. Night-time can be one of the most difficult parts of the day. A child may struggle to settle, wake repeatedly, need repositioning, require suctioning, experience seizures, have breathing difficulties, suffer discomfort, or need close monitoring throughout the night.

Over time, disrupted sleep can affect the whole family. It can impact a child’s learning, behaviour, emotional regulation, therapy participation and general wellbeing. It can also leave parents and carers exhausted, particularly where they are providing complex care during the night as well as throughout the day.

In medical negligence claims involving children with brain injuries, sleep difficulties can be highly relevant. They may influence the level of care a child needs now and in the future, whether professional night-time support is required, whether equipment or therapy maybe required, and whether the family home is suitable for the child’s long-term needs.

Why sleep is so important

Sleep is essential for physical health, emotional wellbeing, cognitive function and quality of life. During sleep, the body undergoes important repair and restoration. Sleep supports recovery, growth, memory, learning, immune function and mental health. It also helps protect against long-term health conditions.

For children, sleep is particularly important because it helps the brain process and store what has been learnt during the day. Good quality sleep is associated with better attention, memory, learning, mood and emotional regulation. It also supports growth and development.

For a child with a brain injury or condition, poor sleep may make existing difficulties more pronounced. A tired child may find it harder to concentrate, cope with changes in routine, participate in therapy or communicate their needs. Sleep difficulties may also affect behaviour, mood and tolerance of daily care tasks.

Why children with brain injuries may have sleep difficulties

Many families caring for a child with a brain injury or condition experience significant sleep challenges. These may include difficulty settling to sleep, frequent night-time waking, early waking, sleep apnoea, nocturnal seizures, dystonia, involuntary movements, or the need for repositioning and suctioning overnight.

Some children may also experience delays in learning which contributes to them finding it harder to learn a sleep pattern or routine, they may have sensory difficulties, visual impairment, insomnia, difficulties with emotional regulation and/or behaviour that impacts on their sleep, excessive daytime sleepiness, respiratory problems, such as nightmares or sleepwalking, or sleep-wake disorders, meaning they may fall asleep and awake much earlier than other people or they may fall asleep and wake much later than others. These issues can lead to a reduction in the quality or quantity of sleep.

Children with learning difficulties and cerebral palsy may be at increased risk of sleep-related problems. Ineke Woods, Sleep Team Manager at Cerebra in the below podcast, notes that research suggests that “86% of children with learning difficulties have sleep problems”. This is considerably greater than the general population

Every child is different. For some families, sleep disruption may be occasional. For others, it becomes an ongoing and exhausting pattern that affects every aspect of family life.

How sleep difficulties affect care needs

Persistent sleep difficulties can have a significant impact on the child, but also on those caring for them. Poor sleep may affect a child’s learning, motivation and concentration. It may reduce their ability to cope with stress or changes in routine. Some children may have challenging behavior, particularly where they have communication difficulties and limited ways of expressing their wants and needs.

This can increase the level of care a child needs. Parents may need to provide reassurance, physical support, medication, repositioning, monitoring, suctioning, help with breathing equipment, behavioural support or comfort during the night. They may also need to remain alert to risks such as seizures, respiratory difficulties or unsafe positioning.

The effect on parents and carers can be profound. Reduced sleep can affect concentration, mood and resilience. It can make it harder to work, care for other children, manage appointments and cope with day-to-day routines. Ongoing sleep problems can leave families feeling overwhelmed, particularly where the difficulties have persisted for a long period.

When working with families who are pursuing a medical negligence claim for a child with a brain injury, it is important to understand the full impact of the injury. That includes what happens at night.

Families often become so used to disrupted sleep that they may not recognise it as part of the child’s care needs. They may describe it as “normal for us” or assume that because they have always provided the care, it is not an important consideration. In fact, night-time care can be a very important factor.

When assessing the care needs associated with sleep, it may be necessary to consider:

• how often the child wakes during the night;
• why they are waking and what support they need;
• whether they need physical assistance, medication, monitoring or reassurance;
• whether there are risks during sleep, such as seizures, breathing problems or unsafe positioning;
• how much sleep parents and carers are getting;
• whether the current arrangements are safe and sustainable
• whether professional night-time care would be appropriate; and
• whether the family home is suitable for carers, equipment and the child’s long-term needs.

These details can help build a clearer picture of the child’s current and future care requirements. They may also assist care experts, accommodation experts, therapists and case managers in considering what support is required. For families who do not have medical negligence claims, these details can also be helpful when seeking additional support from their local authority and/or NHS continuing healthcare (CHC), with night-time care and housing adaptations.

We also consider whether interventions can be put in place to help improve a child’s sleep, such as specialist equipment including sleep systems, safespaces, CPAP machines and postural management and/or medications such as melatonin.

Waking night care and sleep-in care

Some children require continuous supervision, monitoring, physical support or medication overnight. In those cases, waking night care may be needed. This means a trained carer remains awake during the night to provide immediate assistance when required.

Other children may need less frequent support. In those circumstances, sleep-in care may be appropriate. This usually means a carer sleeps for most of the night but is available to assist if needed.

Sometimes, a combination of support is required. This may be particularly important where a child has significant physical, medical or behavioural needs. The level and type of night-time care can affect the overall care package and the way a claim is valued.

Accommodation may also need to be considered. If professional carers are required overnight, the family home may need enough space for carers to work, rest and store equipment, while still allowing the family privacy and space to maintain ordinary family life.

Practical steps families can take

If sleep is difficult, it can be helpful to start keeping a sleep diary. This can record when the child goes to bed, how long they take to settle, how often they wake, what support they need, whether there are seizures or breathing issues, and how the child appears the following day. A sleep diary can help carers and medical professionals understand sleep patterns and identify possible triggers.

Some children may also benefit from sleep studies, which can assess aspects of sleep and the body’s activity during sleep, including heart rate, oxygen levels and muscle activity. These studies may help identify sleep disorders or possible causes of disturbed sleep.

Sleep hygiene and routine are important for good quality sleep. A calm bedtime routine, consistent bed and waking times, reduced screen use before bed, avoiding caffeine, and creating a comfortable sleep environment may support better sleep. Bedtime routines that promote relaxation and settling down for sleep, may include bathtime, muscle massage, changing into pyjamas, low or dimmed lighting and bedtime stories. For some children visual tools may also help to support their understanding, such as a visual bedtime timetable. Ideally bedroom environments should be cool, quiet and dark.

Daytime activity can also make a difference to sleep. Fresh air, daylight, appropriate exercise, hydrotherapy and massage therapy may help children relax and settle and promote better sleep.

However, it is important to recognise that each child is unique and it may take trying different methods and tinkering with routines to find what works best for an individual child.

To learn more about how sleep affects children with brain conditions please watch the below podcast with myself, Ineke Woods, Sleep Team Manager at Cerebra and Maggie Sargent, Case manager and care expert.

Article written by Louise Sankhla, Associate in the Medical Negligence team at Fieldfisher

Email: [email protected]

Website: Child Brain Injury Medical Negligence Claims – No Win No Fee Lawyers | Fieldfisher

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