A paper for discussion by Sarah Hill, co-author of the Postural Care Skills programme

Introduction

Sleep disturbance and deprivation has been identified by families as a major factor in caring for their relative with complex needs. The survey ‘No Ordinary Life’ published by Mencap in 2001 acknowledged that families were disturbed 3 times per night on average and that service providers were dismissive of the lack of sleep they experience. This article will look at the factors which may contribute to sleep disturbance and some of the emotional and physical issues generated.

Sleep deprivation is recognised as a method of torture all over the world and most have experienced the disintegration of ability and morale which results from periods of lack of sleep. Perhaps the most commonly recognised situation is that of parents with a new born baby, however, for those caring in an ongoing situation there is often no end in sight. This article will examine factors which may be involved and discuss possible methods of supporting families. Given structured training using the Postural Care Skills Programme, (2005) the complex issues involved can be better understood and the possibility of improving sleep and using the long hours of the night for therapy can be explored. 

Contributory factors

Many families have been through periods of extreme stress with regards to life threatening complications for the individual they care for and as a result they are particularly sensitive to any ominous signs and symptoms. The intensity of their relationship with a person who is completely dependent on them adds another layer of potency to the anxiety felt and the emotional overlay.

Research shows that the physical factors which contribute to sleep disturbance are multiple and have been identified in both “The Mansfield Project” (Goldsmith 2000) and work carried out to monitor sleep abnormalities in people with cerebral palsy (Kotagel et al 1994).

Lack of movement

People who are unable to move can become stuck in destructive postures at night in which the joints are stressed and painful with the result that body structures are damaged. This leads to increased stiffness of muscle tone, further loss of movement, hip distortions and dislocation, hip and knee flexion contractures, pelvic rotation and scoliosis. In turn these distortions lead to difficulties in all daily activities, a damaging of internal organs and associated pain and suffering. To prevent these problems postural care needs to be provided which will allow the person to lie as straight and comfortably as possible.  

Achieving Thermal Comfort

People who are able to move can adjust their temperature by choosing the appropriate bedding, adjusting heating and ventilation as well as throwing off the covers and pulling them back on. The individual with movement problems may not be able to carry out this “heat seeking and heat avoidance behaviour” and in addition to this their thermoregulation reflexes may not be functioning reliably so that external body signs may be misleading. For many families the option of sleeping with the individual and carrying out heat seeking and heat avoidance behaviour may make the difference between being constantly disturbed or being able to catch some sleep. Understanding of the issues involved, careful monitoring of core temperature, a comprehensive collection of different, good quality covers, support surfaces and night wear are basic requirements for families to manage thermal comfort. 

Sleep Apnoeas

For some individuals sleep apnoea, in which breathing is interrupted, may be an ongoing problem. This may be of a “central” origin in which the messages to keep breathing are unreliable or it may be “obstructive” in which the airway becomes closed. Both of these occurrences are frightening and potentially life threatening and therefore careful monitoring is necessary. Apnoea alarms are commercially available as well as CCTV and are used by some families. Again, the option of sleeping with or nearby the individual is favoured by many.

Epileptic seizures

Epilepsy may be a factor to be taken into account, nocturnal seizures will sometimes take a form which is dangerous for the individual with regards to physical security and length and type of seizure. Many families require specialist support and monitoring of medication to ensure the individual is as safe as possible.  

Disturbance of circadian rhythms

For some individuals, particularly those with visual problems, the pattern of sleeping during the night and being awake during the day will be disturbed. Some may “cat nap” throughout the 24 hour period. Awareness of behavioural work to promote a consistent sleeping period will be beneficial to all the family.

Reflux / Vomiting 

Reflux will influence the position in which the person is most comfortable and safe. For many a degree of tilt in the bed will be necessary to help prevent or reduce reflux. A symmetrical position with as little hip flexion as possible should be achieved so that the tilt does not induce distortion of body shape. If an individual vomits frequently the position in which they are supported should be carefully considered along with their ability to clear their airway. Although a side lying posture may cause asymmetrical rotational distortions it may be necessary to use the position in order to keep the individual safe. 

Sleep Patterns and Behaviour

Sleep is a complex, delicate and sophisticated function, for some people with neurological problems the damage may mean that they are unable to sleep consistently. Behaviours may be affected by any of the complications listed above or other factors. Given the emotional overlay combined with sometimes chronic sleep deprivation it is little wonder that quality of life can be severely affected.

Supporting Families

For families coping in the community with complex sleep issues it is important that professionals have a thorough understanding of both the contributory factors as well as possible solutions.  The utmost respect must be shown at all times for the family’s survival strategies. A course called the Postural Care Skills Programme has been developed to raise understanding and skill levels amongst both families and professionals. Although helping families with the challenges of sleep disturbance is a complex area of work, being involved in protecting and restoring body shape and gaining trust to work in partnership to promote sleep, safety and wellbeing is a most rewarding aspect of healthcare provision.          

Goldsmith, S. (2000) “The Mansfield Project: Postural care at night within a community setting” Physiotherapy  86, 10, 528-534.

Mencap (2001) “No Ordinary Life”.

Kotagel, S Gibbons, V P Stith, J A (1994) “Sleep abnormalities in patients with severe cerebral palsy” Developmental Medicine and Child Neurology, 36, 304 – 311.

Okawa, M., Takahashi, K., Sasaki, H., (1986) “Disturbance in circadian rhythms in severely brain damaged patients correlated with CT findings “ Journal of Neurology, 233, 274 - 282.

Postural Care Skills Programme (2004) www.posturalcareskills.com

Discussion is welcomed on this paper

For more information about the Postural Care Skills Programme visit www.posturalcareskills.com

E-mail Sarah Hill: sarahhill@posturalcareskills.com