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The triumph of hope over experience: using patients' experiences to inform leg ulcer care through participatory action research
Örebro University, School of Health and Medical Sciences.
Sektionen för häsa och samhälle, Kristianstad Högskola.
Sektionen för häsa och samhälle, Kristianstad Högskola.
2009 (English)In: Journal of Nursing and Healthcare of Chronic Illness, ISSN 1752-9816, E-ISSN 1752-9824, Vol. 1, no 1, 96-104 p.Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
Oxford: Blackwell Publishing, 2009. Vol. 1, no 1, 96-104 p.
Keyword [en]
Participatory action research, qualitative, participation, patient centeredness
National Category
Social Sciences Interdisciplinary Nursing
Research subject
Nursing Science
Identifiers
URN: urn:nbn:se:oru:diva-8449DOI: 10.1111/j.1365-2702.2008.01006.xOAI: oai:DiVA.org:oru-8449DiVA: diva2:275116
Available from: 2009-11-03 Created: 2009-11-03 Last updated: 2017-03-22Bibliographically approved
In thesis
1. Att göra abstrakta begrepp och komplexa situationer konkreta: en avhandling om deltagarbaserad aktionsforskning i svensk vård och omsorg
Open this publication in new window or tab >>Att göra abstrakta begrepp och komplexa situationer konkreta: en avhandling om deltagarbaserad aktionsforskning i svensk vård och omsorg
2009 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

This dissertation covers the subject of how abstract concepts and complex situations can be concretized through research together with practitioners. The dissertation is based on four empirical studies. The researcher role, the practitioner participation and the methods for data collection and analysis have varied. In study I the concept ‘Närsjukvård’ was explored to understand how practitioners, managers and politicians in hospitals, primary health care and municipalities interpreted the concept. The researcher acted as consultant who collected data by interviews and questionnaires. Practitioners’ participation was limited. ‘Närsjukvård’ was interpreted as accessibility to hospital beds, accessibility to primary health care, collaboration between care providers and continuity and developed home care. Study II aimed to explore how people experienced leg ulcer care. The researcher acted as a consultant who performed the interviews and  analysed the data. Although the informants experienced their encounters with the nurses as satisfying, the study illuminated low participation in the care and low practitioner involvement in issues about daily living with the leg ulcer. The findings were brought back to the informants and the practitioners. The project did not proceed towards development and change. In study III the aim was to explore the Swedish concept ‘trygghet’ by using stories from daily life. Four older women were interviewed and the Story Dialogue method was used together with assistant nurses and registered nurses who participated in data collection and analysis. Two themes emerged: Sense of Security and factors strengthening the Sense of Security. Together with the assistant nurses, areas for improvements were identified. Study IV aimed to explore the discharge planning situation in order to     generate ideas for development. Members from a discharge planning network participated in the whole research process. Conditions for a successful coordinated discharge planning situation were a system including: the participation of the patient, the competence of the staff and the support from the organisation. The group arranged a workshop about communication and interdisciplinary   collaboration. The findings resulted in a form with self-evaluation questions. In conclusion, this thesis illustrates that it is possible to clarify abstract concepts and complex situations together with practitioners. To do this successfully, sense making activities and to start from practitioners’ experiences and their own context are key factors. The studies illuminate that building trust, relationship and sense of participation are essential in health and social care in general and specifically in the participatory action research process.

Place, publisher, year, edition, pages
Örebro: Örebro universitet, 2009. 67 p.
Series
Örebro Studies in Care Sciences, ISSN 1652-1153 ; 26
Keyword
Participatory action research, Story Dialogue Method, Health and social care, Organisational change, Leg ulcer care, Sense of Security, Discharge Planning
National Category
Nursing Social Sciences Interdisciplinary Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:oru:diva-8452 (URN)978-91-7668-705-5 (ISBN)
Public defence
2009-12-15, Hus 6, Aulan, Högskolan Kristianstad, Kristianstad, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2009-11-19 Created: 2009-11-03 Last updated: 2011-05-02Bibliographically approved

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CiteExportLink to record
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Citation style
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