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Patient experience

Living with a chronic wound

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Having a chronic wound can seriously impair patients’ quality of life

Abstract

Leonard, S., Vuolo, J. (2009) Living with a chronic wound. Nursing Times; 105: 16, early online publication.
There is substantial evidence that chronic wounds have a negative effect on quality of life and that patients can find concordance with treatment difficult (Benbow, 2008; Langemo, 2005). Difficulties experienced include management of pain, odour and exudate as well as problems with dressings falling off or adhering to wounds. In this article, a nurse describes her experience of living with a chronic wound, and its effect on her life over a 10-month period. She provides valuable insight into the way patients cope and adapt to the challenges posed by modern wound care treatments and highlights how the patient experience is essential in informing how we manage care.

Keywords: Patient experience, Concordance, Wound healing, Odour, Pain

 

Authors

Sylvia Leonard, RGN, Dip Nursing Practice, is tissue viability clinical nurse specialist, Luton and Dunstable NHS Hospitals Trust; Julie Vuolo, MA, PGDip Ed, BA, Dip(TV), RN, is senior lecturer tissue viability and link lecturer, East and North Hertfordshire PCT, University of Hertfordshire.

 

Box 1. Case study

After two years of trying to ignore the nagging chronic pain with intermittent swelling along her anal cleft, Sylvia, a tissue viability clinical nurse specialist, working in an acute NHS trust, was diagnosed with pilonidal sinus disease. This affects the epithelial track (the sinus) which sits in the skin of the natal cleft just behind the anus and generally contains hair (Miller and Harding, 2003).

Sylvia visited her GP when the pain became difficult to control, by which time the sinus had developed into an infected abscess requiring antibiotic therapy and surgical referral. In July 2007, a Bascom’s procedure (Bascom, 1981) to incise, drain and curette the chronic abscess was performed. The wound was closed by suture and dressed with paraffin gauze and a Surgipad. Sylvia was discharged home with instructions to rest and ‘use whatever dressing you think best’.

The post-operative wound was slow to heal and became infected, resulting in superficial dehiscence (wound breakdown). It eventually closed over late in September after a course of antibiotic treatment and the use of a silver-based antimicrobial dressing.

By October, Sylvia had returned to work and, despite being in continual pain, she gradually returned to a reasonably normal level of activity. However, this was short-lived as another wound infection resulted in the entire post-operative area opening up again.

The open wound, now extending along the natal cleft, was painful and malodorous with a purulent exudate. Sylvia was self-managing the wound with difficulty and it was significantly damaging her physical, emotional and social well-being. Further surgical intervention was scheduled but this time the wound dehisced within just a few days of surgery, again as a consequence of infection.

Eight days post-operatively Sylvia attended a follow-up appointment accompanied by a close friend who was also an experienced community specialist nurse. At this follow-up appointment, on the advice of the friend, the use of topical negative pressure (TNP) therapy (Box 2) was agreed as an effective and practical alternative to further surgery and antibiotic therapy. With TNP in place and with her friend’s ongoing support with dressing changes, Sylvia was discharged home.


The patient’s experience

When my wound broke down for the second time, I did not want to be readmitted to hospital but was worried about managing the wound at home. I knew from experience that the dressings can slip out quite easily and that the wound exudate, which was increasing in amount, would be a problem.

Topical negative pressure (TNP) seemed the ideal solution. This provides a closed system to manage the exudate effectively and negative pressure to hold the dressing securely in position and promote granulation (Box 1).

 

Box 2. Topical Negative Pressure

Topical negative pressure (TNP) is a method of wound management that relies on the application of a uniform negative pressure to the base of the wound (Banwell and Teot, 2003), causing physical and physiological changes at a cellular level.

The vacuum created drains exudate away from the wound while maintaining a moist wound environment.

It has also been suggested that TNP therapy accelerates wound healing by stimulating angiogenesis, decreasing bacterial load, removing toxic chemicals and matrix metalloproteinases and increasing nutrient and oxygen levels (Molnar, 2004).

I have discharged many patients home with a TNP system. I have encouraged and supported them, listened to their anxieties and fears and reassured and sympathised with them, but I never really understood what they were going through. I lived with TNP for over seven weeks and I now know what my patients experience first hand.

First, there is the noise. When the pump sucks down, there is a loud, gurgling sound not unlike somebody passing a large amount of flatus at close proximity. This sucking results from a break in the vacuum, and happens every few minutes. Achieving a vacuum proved to be a problem. The pump runs day and night, so the suck-gurgle-blow-hiss cycle is non-stop. Getting a good night’s sleep is difficult and this was a problem for my partner as well as for me.

The noise is bad enough in your own home but being in the supermarket queue when a loud flatus-type noise is suddenly emitted firmly and obviously from your direction does cause everyone to stare. I later heard of a woman with a TNP pump who changed her shopping habits and went on a Saturday morning when there is plenty of background noise to absorb the sound.
The pump comes with a lot of tubing. This meant I had to tuck the excess into my waistband when walking to avoid tripping on it.

On one of my first outings, I actually held the tubing through my coat pocket as I was so anxious I might trip and pull the dressing out of the wound bed. In my local post office I let go of the tubing to reach for my purse. Filled with blood and exudate, the tubing flopped down and hit a child standing behind me in the face. The subsequent hysteria (hers, the mother’s and mine) resulted in me leaving a five-pound note on the counter mid transaction and making a very painful and fast exit. I was so mortified that I only left the house for hospital appointments and food shopping after that.

Then there is the smell. I had no idea how badly I could smell and how this would affect me. As a clinician, I am confronted with malodour only at dressing changes. I was naive in some respects about the impact this has on the patient, who lives with the odour 24 hours a day.

I spent three days wondering at the state of repair of the sewage works across Bedfordshire until it dawned on me that I was the source of the foul smell. Wound swabs confirmed an anaerobic infection and a course of antibiotics was prescribed.

I am unable to express the shame I felt, as it was affecting not only me but also those around me. The smell was so bad I could taste it, putting me off food, and this caused concern for my nurse as I had already lost a significant amount of weight (almost two stone at this stage). The little sleep I did get was cut short every time I turned in the bed, despite my best efforts to tuck the duvet tightly round me so that the smell did not escape.

Briefly, the odour disappeared but then returned. This was not the same odour but something different and testing a further swab showed that the wound was now infected with MRSA.

My nurse insisted on daily dressing changes with an antimicrobial as soon as the initial odour appeared. The thought of this filled me with fear because the most painful part of the procedure for me was the removal of the adhesive part of the dressing. I started the dressing removal process well in advance of my nurse’s arrival, as it was a very slow process. The next most painful experience was when the TNP machine was initially switched on. This caused extreme pain but lasted only 10 seconds.

Despite all these things, I liked the machine. Apart from the pain at dressing changes, it actually helped. After the initial shock, my pain almost completely disappeared and for most of the time paracetamol was an effective analgesic.

The most surprising benefit of TNP was the immediate feeling of safety. You feel the wound being sucked together and the dressing is inside the wound and will not fall out.

However, concordance is difficult. In those long, drawn‑out lonely nights, when pain, noise and leakage becomes unbearable, there is no one you can contact, and it is not surprising that patients are driven to despair. For some, the only sensible option is to alter/remove dressings so that they can at least get some rest.

Unfortunately, the MRSA infection prevented the wound from healing and I needed further surgery and treatment. In all, it took over 10 months to heal, which is not long in comparison with the experience of some of my patients.

However bad the experience was, I can now empathise with my patients. I have learnt so much that cannot be found in a textbook and this has changed my whole approach to wound care.

Conclusion

We can learn a lot by listening to our patients’ experiences of their wound treatments and from seeking to understand how treatments can have a negative effect on them and their ability to cope with a chronic wound.

This mutual understanding can help in setting joint goals for care and result in a plan that is more likely to be acceptable to both patient and healthcare professional, as well as one that is more likely to achieve the desired wound care outcomes.

 

Practice points

  • Ask your patient how they feel about their wound and how it affects their mental, physical and social well-being
  • Show you understand their situation by saying or doing something in response
  • Establish a therapeutic relationship with your patient; trust and continuity of care are paramount
  • Help your patient to take control of their situation, but do not leave them to deal with it alone
  • Do not make assumptions; your patient is the expert on how they feel and what is most important to them

 

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