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

• Aims and objectives: The aim of this Participatory Action Research (PAR) project was to find out how the patients experienced their care in order  to allow the practitioners to reflect about the patients’ view as a vehicle for a changed leg ulcer care practice. This paper reports on findings from the project and from the PAR process.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 the chronic condition has to deal with physical, emotional, cognitive and social problems and usually has frequent and long-term encounters with practitioners. In one municipality in a southern part of Sweden researchers were engaged as consultants in a PAR project aiming to improve the care for persons with chronic leg ulcers.Method: Nine older persons with chronic leg ulcers, mainly treated in primary care, were asked about their experiences of the care. The analysis proceeded in several steps including a number of content analysis and reflective dialogues with practitioners and persons with chronic leg ulcers.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 PAR project did not succeed to proceed from problem identification towards development and change.Conclusion and relevance to clinical practice: Participation is about negotiation and transferring power and authority from practitioners towards patients and from researchers towards practitioners and patients. This is however difficult to achieve in practice. This project illuminated that success in performing a PAR project that brings sustainable change requires substantial work to involve practitioners in initiating and planning the research.

Ämnesord

SAMHÄLLSVETENSKAP  -- Annan samhällsvetenskap -- Tvärvetenskapliga studier inom samhällsvetenskap (hsv//swe)

SOCIAL SCIENCES  -- Other Social Sciences -- Social Sciences Interdisciplinary (hsv//eng)

MEDICIN OCH HÄLSOVETENSKAP  -- Hälsovetenskap -- Omvårdnad (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Health Sciences -- Nursing (hsv//eng)

Nyckelord

Participatory action research

qualitative

participation

patient centeredness

INTERDISCIPLINARY RESEARCH AREAS

TVÄRVETENSKAPLIGA FORSKNINGSOMRÅDEN

Caring sciences

Vårdvetenskap

Vårdvetenskap

Nursing Science

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