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The experience of living with a pressure ulcer.

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VOL: 103, ISSUE: 15, PAGE NO: 42

Sue Bale, PhD, BA, PGDip, DipN, NDN, RHV, RGN, is associate nurse director, Gwent Healthcare NHS Trust, Cwmbran, South Wales

Carol Dealey, PhD, MA, BSc, RGN, RCNT, is senior research fellow, University Hospital Birmingham NHS Foundation Trust, Queen Elizabeth Hospital, Birmingham; Tom Defloor, PhD, RN, is head of nursing science department, Ghent University, Ghent, Belgium; Alison Hopkins, MSc, DN Cert, RGN; Fran Worboys, BSc, DN Cert, RGN, are both clinical nurse specialists, East London Wound Healing Centre, Tower Hamlets PCT, London

The aims of this study were to explore the older person's experience of having a grade three or four pressure ulcer that had been present for longer than a month and to test the methodology and study design. The exclusion criteria were spinal cord injury and the inability to provide informed consent. The pilot study was funded by the European Pressure Ulcer Advisory Panel (EPUAP) and eight participants were recruited from four centres: three in England and one in Belgium.

The aims of this study were to explore the older person's experience of having a grade three or four pressure ulcer that had been present for longer than a month and to test the methodology and study design. The exclusion criteria were spinal cord injury and the inability to provide informed consent. The pilot study was funded by the European Pressure Ulcer Advisory Panel (EPUAP) and eight participants were recruited from four centres: three in England and one in Belgium.

Heideggarian phenomenology was utilised for this study because little was known of the older patient's experience. Phenomenology is a research design that explores the ways in which people experience and understand both their world and their relations with others and their environment. Unstructured interviews were used to encourage participants to speak freely about their experience of having pressure ulcers. The Heideggarian hermeneutical approach, which has recently been developed to study nursing phenomena (Parahoo, 2006), was used as it acknowledges the contribution of both the participant and the researcher.

Interpretative phenomenological analysis (IPA) (Smith et al, 1999) enabled the identification of themes and connections and the exploration of patterns and tensions. In conducting this study we had to carefully consider the effect that translation might have on meaning as Flemish was translated into English. The issues of using translation and the impact of having multiple data collectors were addressed through researcher training. During 2003-2004 eight patients with grade three or four pressure ulcers were recruited with an age range of 68-101 years.

The analysis revealed three main themes with associated sub-themes.

- Endless pain

Pain was a constant and severe feature for this group and they used graphic descriptors to describe the shock and severity of it: 'constant', 'suffering', 'splitting'. This was summed up by John, who said that it was enough to make 'a grown man cry'. Analgesia was not always effective:

'They give me pain killers and sleeping tablets but I wake up with it' (Theresa).

John also described how he 'put a bit of weight on your heel and [it] feels as though it's burst open'. The pain prevented proper rehabilitation from his hip replacement, which caused even more worry.

Some found that analgesia was insufficient and that the severity of the pain was not recognised by their doctor. Strategies were developed to reduce their pain; for two participants repositioning was useful but for others the response to the pain was to keep still. Moving simply made the pain worse:

'As soon as (I move) it'll jump and start all over again' (John).

The appropriate pressure-relieving equipment was used for most participants but, despite this, several participants described the painful effects of equipment. Again the descriptors were graphic, describing the mattress cells as lumps or rods, sticking into their back or aggravating their pain. They knew about the varieties of equipment, the role of repositioning and what was meant to be useful for them, but the reality was often different.

- A restricted life

Pain was a restricting feature and had a significant impact on participants' lives and how they felt about themselves. The event of a pressure ulcer was shocking. Sometimes participants felt unhappy, comparing themselves with how they were before and often making themselves feel miserable:

'Miserable sod I was... I would not let them touch me or nothing' (Joan).

They described being worried, depressed, feeling burdensome, inadequate and having a sense of powerlessness:

'Obviously when this situation develops you cannot see the end of the road' (Betty).

John said that 'what gets to me more than anything [is that]... I can't do... sod all'. There was a sense of worthlessness as he continued:

'This limping about is so painful, I'm happier when I am sitting out of the way... where [before] I used to be so active'.

Several talked about the impact of wound odour:

'That was the worst part, the smell. It always seemed to be worse when anybody was here but it... was in my mind' (Bob).

The restrictions impacted on their social lives and general activities and there was awareness that their pressure ulcer also had an impact on others. This focused primarily on worry for their spouses, siblings or children, and the burden or restrictions this brought:

'She was the one who did all the work and all the worry' (Bob), or

'I can't go with her now, even if I did, I wouldn't be any good' (John).

The restrictions on their lives brought about by the pressure ulcer had additional consequences or implications. Extended hospital stay was acknowledged as a problem and the ulcers had placed additional restrictions on rehabilitation from their primary condition.

- Coping with the pressure ulcer

Coping with pressure ulcers and the consequences was facilitated through comparison; participants compared themselves to others and the knowledge that things could be much worse. They knew they were not the only ones with pressure ulcers and questioned why they should they have a different experience. Positive comments were that, 'there are other people worse off than me' (David) and that nurses or carers had stated their ulcers were not as large as some they had seen (Maria and Denise).

This led the participants to an acceptance of their situation plus some concept of fatalism: 'with me I say what will be will be' (Bob) or, as John said, 'well that's how it is I suppose, the pain in the heel, you put up with it'.

Positive thinking was seen as a part of getting on with their lives.

The theme of endless pain was the most surprising finding despite its significant presence within the body of literature on the lived experience of leg ulceration and the feeling of hopelessness associated with chronic pain (Hopkins, 2004; Krasner, 1998; Chase et al, 1997). Essentially the pain experience stopped participants moving away from the stimulus. It is recognised that there is a lack of routine use of pain-assessment tools and provision of analgesia in the management of pressure ulcers (Szor and Bourguignon, 1999; Dallam et al, 1995).

The cycle of pain, not the pain itself was endless. The most significant and unexpected feature of this was that the patients did not move as this caused more pain; this conflicts with best evidence that frequent repositioning is required in the prevention and management of pressure ulcers (Defloor et al, 2005; Clark, 1998).

The participants described eloquently their shock at having a pressure ulcer and the changes that this event brought to their lives. The feelings of restrictions reflected the findings of Langemo et al (2000). Their stories reveal how this pain made them feel and the impact on how they saw themselves (Charmaz, 1983). They disliked their new dependence on others and the change from their former lives. However, their strength of characters were revealed in their acceptance and it must be remembered that the participants all had co-morbidities, the most common being arthritis which already restricted their lives.

The participants described their concerns about their families and the impact of the pressure ulcers on them. This finding was reflected by Baharestani (1994), who found that pressure ulcers impacted on carers and their ability to care.

A more detailed discussion of the results and implications can be found in Hopkins et al (2006).

The design has proved to be fitting to this investigation across multiple centres within the UK and Belgium. The stories described provide shocking revelations about the impact of pressure ulcers, the intensity of pain and the subsequent impact on the patients' lives. It is clear that pain assessment is inadequate and needs to be addressed for every patient with a pressure ulcer.

This article has been double-blind peer-reviewed.

For related articles on this subject and links to relevant websites see

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