During my first rehabilitation following the onset of SCI, I was sharing a room with a patient who was suffering from pressure ulcers. Seeing her suffer, I promised myself then I would not allow that to happen to me. But just three months after I returned home, I had my first ulceration. And now I’m back here again two years later with my second.

Monica, January 2007

It had been over two years since Monica had needed to be hospitalized. At the age of 67, she had suffered a spinal cord injury (SCI) that resulted from an emergency surgery to treat an aortic aneurysm.

The SCI was one of the unfortunate costs of a procedure that likely saved her life. However, three months later she developed her first pressure sore. Monica had always feared pressure ulcers and had hoped to avoid them. But after the initial ulcer’s treatment and despite her hopes, she made only limited efforts to prevent them from forming.

The lifestyle habits that put her at risk were deeply settled. To her detriment, she actively worked to put the risks of pressure ulcers out of her mind. In doing so, she continued to act irresponsibly with regard to prevention, smoking and insufficiently caring for her skin. Understandably, this was an eventual failure in maintaining her health and preventing complications.

To her dismay two years after her rehabilitation, a new ulceration developed, and as we shall see, this can be a deadly serious complication.

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Risk Prevention, Health behaviour and Health Maintenance in SCI Patients

Following an SCI, patients face the challenge of developing a spectrum of new health behaviours that allow them to both manage and overcome their physical limitations and to prevent further SCI-related complications such as pressure ulcers.

Some of these behaviours are essential for survival and others help to maintain quality of life. Therefore, education and behaviour adaptation in the areas of prevention strategies can be viewed as one of the major aims of the rehabilitation process.26 In order to successfully treat and prevent complications like Monica’s pressure ulcers, a rehabilitative strategy is needed that undertakes a two-pronged approach, including both contributions from health professionals, as well as efforts from the patient him- or herself.

The health care team is concerned not only with the medical treatment but importantly also the prevention of pressure sores by strengthening and integrating the patient’s self-management capacity and performance, being an integral part of health behaviour.

This behaviour includes following the treatment procedures and performing the necessary preventative interventions (known as self-management). The patient’s contribution to her health centers on these latter components. Both treatment and prevention strategies should be based on a bio-psycho-social as well as environmental understanding.2728

Box 3 illustrates one model of risk and protective behaviours.

In the example of the pressure ulcer, it is hoped that a patient will engage in specific protective behaviours:

  • follow her health team’s evidence-based treatment scheme (e.g. taking prescribed medication),
  • translate the theoretical knowledge she gains into her daily routine (e.g. undertaking skin control activities) — strengthen healthy activities (e.g. exercise and nutrition)
  • avoiding those activities that potentially increase the risks of ulcerations (e.g. smoking, increased pressures on the areas of skin at risk)

However, it must be stated that although much is known about prevention, pressure ulcers and related health behaviour, the condition remains prevalent among SCI patients. Furthermore, it is not entirely clear why “some patients do not establish and maintain the health behaviours necessary for optimal skin care and pressure ulcer prevention.”3233

Box 3 | Health and Risk behaviour

Importantly, both types of behaviours occur in an individual. The extent of these behaviours results in four general risk groups that can help to inform health care providers.29 Risk behaviour is self-destructive and puts the patient “at risk” for ulcerations.30 Protective behaviours, on the other hand, help to “buffer or reduce the likelihood of secondary conditions.” Though relationships between these factors and secondary conditions are not always easy to establish, the model can help to guide the rehabilitative process.31

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At the time of Monica’s diagnosis of aortic aneurysm, her physician made a strong recommendation for emergency surgery as the condition in Monica’s case was deemed to be life-threatening. However the surgery was not without its own risks. Monica found herself shocked at the unexpected diagnosis and undecided as to what to do. Her fragile health condition was serious and could take her life at any moment. In the face of this extreme and serious condition and risky treatment option, she simply didn’t know what to do.

Against the advice of her medical team, she left the hospital and returned home to discuss the condition with her family. One long and nervous week later, Monica made the decision to return for the life-saving aortic surgery.

The aortic aneurysm repair was performed successfully. However, it also resulted in a spinal cord injury (ASIA B, at level of Th8) — one of the most serious complications associated with the surgery. This resulting SCI required further treatment and rehabilitation and caused even more complications. In the same year, these included one instance of a serious, stage IV pressure ulcer at the right trochanter major, which also resulted in osteomyelitis. Following the successful treatment at the rehabilitation centre, two years passed where she otherwise adapted her life to living with incomplete paraplegia.

However, preventative health behaviour was still lacking. One potential risk factor worth noting here was her addiction to cigarettes: Monica smoked roughly 40 per day and unfortunately possessed neither the desire nor the intention of quitting — certainly a risk factor.

Her fragile health condition was serious and could take her life at any moment. In the face of this extreme and serious condition and risky treatment option, she simply didn't know what to do.

To put this into some context, the following statements offer some insight into Monica’s own perceptions of health behaviour and feelings towards her situation:

Paralysis to me means that I’m really no longer free; that I can’t do the things I want to.To cope with this disability, I have to say that my emotions aren’t relevant anymore. They certainly were in the beginning, when I fell into a deep hole of depression. Now I have to constantly say to myself, “This is simply the reality. I’ve got to make the best of it. That’s what I’m doing.

Sometimes I have to cry all of a sudden for no real reason. I feel so much anger at crying and not knowing why … but I’ll have a cigarette and go outside; then everything’s OK again.

I just don’t want to know the consequences of this disease … I really don’t want to know.

Monica in 2007

Despite her previous dread and experience with ulcers, in 2007, two pressure ulcers again developed on her left and right hip. These were only diagnosed during a routine examination at the rehabilitation center and classified as one stage II ulcer, and even more seriously, one stage IV ulcer.

She was admitted to the rehabilitation center for treatment. Again, there was infection of the bone and a surgical intervention was necessary. After a successful operation, a standard post-operative management intervention was conducted without any further complications.

A rehabilitative strategy to treat pressure ulcers should seek to implement a patient-oriented, comprehensive approach, not only focused on regaining functioning that existed prior to the ulcers, but also minimize the risk of recurrent ulcers and complications. Therefore risk factors had to be taken into account (View Box 2)

A number of risk factors clearly play a role in Monica’s case. To plan comprehensive rehabilitation, the Rehab Cycle was implemented four weeks after the surgery.

...minimize the risk of recurrent ulcers and complications.