Is it possible to help control or even reverse contractures, improve sleep patterns, relieve pain, ease wheelchair positioning, decrease self-abusive behaviors and simplify activities of daily living like dressing and hygiene without medications or surgery? Anecdotal evidence from my practice and other sources suggests that 24 hour postural care, implemented by committed families and caregivers, can offer these benefits.
What is 24 hour postural care? In 2001 an article was published describing the Mansfield Project, a postural care service in Manchester, Nottinghamshire in Great Britain. (2) Thirty one families of children with disabilities up to the age of 19 were given training and night-time positioning systems to implement at home, providing feedback about their experiences and the results they observed. It seemed eminently practical. I already had personal experience providing 24 hour postural care for my youngest daughter, who had cerebral palsy. For me it was second nature to provide her with a variety of well-aligned positions for activities and for rest. Yet I knew from my experiences as an occupational therapist as well as the mother of a child with disabilities, that rolled blankets and pillows did not always do the trick.
In 1976 Fulford and Brown described the development of severe deformities in children with cerebral palsy as being caused by the effects of immobility and gravity on the body of a growing child. (1) While a child with cerebral palsy is born with a body that is shaped like any other child, gravity and immobility can take their toll over time and result in windswept deformity, asymmetrical flattening of the rib cage, hip abduction contractures and flattening of the head on one side. The good news is that careful attention to supporting well-aligned, symmetrical positions for all activities (including sleep) can pay off with the benefits I listed at the beginning of this article.
Individuals with significant motor disabilities frequently sit in static, asymmetric positions unless they are provided with seating systems to promote well-aligned, functional posture. While the average able- bodied person changes position every ten seconds, many of our clients are unable to do the same. If they can shift position, their movement repertoire may be limited to habitual postures influenced by muscle tone, weakness and other factors such as reflexes. Therefore, many people take the path of least resistance when out of their seating systems and assume (or fall into) the asymmetric, poorly aligned positions that gravity dictates. When we consider wheelchair seating and function, do we think about what happens to a person who spends hours lying in a destructive position when he or she is not in the wheelchair? What happens is distortion of body shape, which has significant implications for health and function.
We spend hours evaluating, justifying, fitting, and modifying proper seating systems for kids and adults with complex postural needs. Yet many of them spend as much or more time out of their seating system than in it. With 8,760 hours in a year, approximately 3,640 hours are spent in bed. Ask questions, do the math and you will see that most people spend at least 1/3 of their time out of their seating systems – most of it in bed. With education and support, families and caregivers can transform this time into therapeutic intervention.
Night-time postural care is effective because while sleeping a child is less affected by tone, spasticity and the activity demands of waking hours. He or she is more likely to tolerate the gentle orthotic effect of corrective positioning. If the body is lying flat and supported in a symmetrical position, gravity helps mold the body symmetrically rather than distorting it. This is really just expanding on the idea of night-time splinting, a well accepted approach.
Allow me to share stories of several young people with cerebral palsy who have benefited from use of night-time positioning systems:
- Cliff is a young man who crawled out of his bed and wandered in the house at night, until he was fitted for a sleep system that cradled him symmetrically in bed.
- Kris habitually awakens with tightly flexed and abducted hips. He requires extensive stretching before his morning hygiene routine – and scratches and digs at his face during this process because of pain and frustration. During a three night trial of equipment that supported him supine with his legs separated and flexed, Kris stopped his self abusive behavior, was much easier to dress in the morning and fit more easily into his seating system.
- Jackie is a young adult who experienced severe pain when she was bed bound for over a year. A bed positioning system to support her body symmetrically and relieve strain on her joints was implemented, and her pain level was reduced so drastically that she cried when the supports were removed temporarily for cleaning.
- Billy was 9 years old and had never slept through the night. He (and his parents) awakened at least 5 times per night. He hated going to bed, and Billy’s father had to stretch him out in the morning before he could sit in his wheelchair. Billy slept through the night for the first time after implementation of a sleep positioning system, and began going to bed happily. His father found that Billy could be easily positioned in his seating system right out of bed, even without the customary morning stretching routine. This family has slept better and remained committed to night-time positioning for the past two years.
I highly recommend working as a team in exploring sleep positioning options to protect the body shape of individuals with significant motor disabilities. Such programs can only be carried out by committed family members and caregivers who believe in the approach. While funding may be a challenge, the health benefits can be huge.
If you are interested in learning more, look at the resources below.
- Fulford GE & Brown JK “Position as a cause of deformity in children with cerebral palsy” Developmental Medicine and Child Neurology, 18, 305 – 314.
- Goldsmith S. (2000) “The Mansfield Project: Postural care at night within a community setting” Physiotherapy 86, 10, 528-534.
Tamara Kittelson-Aldred, MS, OTR/L, ATP
Access Therapy Services, LLC/Eleanore’s Project, Inc.