The triumph of hope over experience: using peoples’ experiences to inform leg ulcer care through participatory action research

Abstract

Aim. To explore how people experienced leg ulcer care so as to inform practitioners about the patients’ view as a vehicle for a changed leg ulcer care practice. Background. Great numbers of people suffer from chronic leg ulcers and many have to live with their illness for a long time. Even when the illness is controlled by medical treatment, the person with leg ulcers has to deal with physical, emotional, cognitive and social problems and long‐term encounters with practitioners. Method. A Participatory Action Research approach was used. Nine older persons with chronic leg ulcers, treated in primary care, were asked about their experiences of the care. Content analysis and reflective dialogues with practitioners and persons with chronic leg ulcers was performed. The study was undertaken from autumn 2004 to spring 2005. Result. Although the persons with chronic leg ulcers experienced their encounters with practitioners as satisfying, findings illuminated low participation in their own care and low practitioner involvement in issues about their daily living with chronic illness. In addition, the participatory action research project did not proceed from problem identification towards development and change. Conclusion. Participation is about negotiation and transferring power and authority from practitioners towards patients and from researchers towards practitioners and patients. Undertaking a participatory action research project that brings sustainable change requires substantial work to involve practitioners in initiating and planning the research. Relevance to clinical practice. Participation requires true partnership. To reach participation between researchers, practitioners and patients would need a significant change in attitude of all parties as well as a change in the care culture. Changing attitudes is not enough as long as practitioners and patients are stuck in a hierarchical structure with predetermined and taken for granted roles and relations in the medical culture.