title: Patient stories of living with a pressure ulcer.
abstract: OBJECTIVE
  This paper reports the findings of a pilot study exploring the experience of older people living with pressure ulcers.
  
  
  BACKGROUND
  Pressure ulcers are known to be a significant health burden, but little is known of the impact on the quality of life of the sufferer. They mainly affect older people, and this is a neglected group in previous studies of this topic.
  
  
  METHODS
  A Heideggerian phenomenological approach was used and patients were recruited if they were over 65 years of age and had a grade 3 or 4 pressure ulcer that had been present for more than a month. Patients were recruited from multiple centres but the data were analysed centrally. The study took place in 2003-2004.
  
  
  RESULTS
  Analysis of the transcripts revealed three main themes, all with associated subthemes: pressure ulcers produce endless pain; pressure ulcers produce a restricted life; coping with a pressure ulcer. The endless pain theme had four subthemes: constant presence, keeping still, equipment pain and treatment pain. Some patients found that keeping still reduced their pain. Several patients also reported that pain was exacerbated by their pressure relieving equipment and at dressing change. There were three subthemes for the restricted life theme: impact on self, impact on others and consequences. Patients found that the pressure ulcer restricted their activities and had an impact on their families. In addition, for some, the restrictions delayed their rehabilitation. To cope with their pressure ulcers, patients developed ways of accepting their situation or comparing themselves with others.
  
  
  CONCLUSIONS
  Although a pilot, this study has produced a wealth of data that demonstrates the impact of pressure ulcers on people. While a larger study is required to obtain a European perspective, it is still reasonable to conclude that the issues of pain and restrictions should be considered in the development of pressure ulcer treatment and prevention guidelines.
authors.affiliation: East London Wound Healing Centre, Tower Hamlets PCT, London, UK. alison.hopkins@thpct.nhs.uk
authors.forename: Alison
authors.initials: A
authors.lastname: Hopkins
authors.forename: Carol
authors.initials: C
authors.lastname: Dealey
authors.forename: Sue
authors.initials: S
authors.lastname: Bale
authors.forename: Tom
authors.initials: T
authors.lastname: Defloor
authors.forename: Fran
authors.initials: F
authors.lastname: Worboys
mesh_terms: D000203:Activities of Daily Living; D000223:Adaptation, Psychological; D000368:Aged; D000369:Aged, 80 and over; D001530:Belgium; D005260:Female; D006801:Humans; D008297:Male; D010146:Pain / Q000209:etiology; D059408:Pain Management; D010865:Pilot Projects; D003668:Pressure Ulcer / Q000150:complications / Q000523:psychology* / Q000628:therapy; D011788:Quality of Life; D006113:United Kingdom