Ethical issues in participatory action research.
The purpose of this article is to describe the ethical issues arising out of participatory action research (PAR), on the basis of both an empirical study and the research literature, and to discuss how to deal with these issues. The data consist of the experiences and results of three phases of PAR relating to orthopaedic patients with rheumatoid arthritis (RA) and the analysis of 20 articles on the ethics of action research. As a result, the following ethical issues and the ways to treat them were discussed: informed consent, confidentiality and anonymity, protecting an individual from harm, the role of the researcher, the location of 'power' in PAR, and the ownership of the research. The flexibility of PAR in use and its main features are also related to the decisions made and actions taken in response to ethical issues. It is particularly important in PAR to proceed according to the participants, and to involve them from the beginning of the process, in order to insure the equal balance of power between participants and researcher.
Löfman
Päivi
P
South Carelia Polytechnic, Lappeenranta, Finland. paivi.lofman@mail.scp.fi
Pelkonen
Marjaana
M
Pietilä
Anna-Maija
AM
D001172:Arthritis, Rheumatoid / Q000451:nursing / Q000523:psychology; D001291:Attitude of Health Personnel; D001294:Attitude to Health; D003219:Confidentiality / Q000941:ethics; D003657:Decision Making / Q000941:ethics; D032984:Ethics, Research; D005387:Finland; D006302:Health Services Research / Q000941:ethics*; D006801:Humans; D007258:Informed Consent / Q000941:ethics; D016294:Models, Nursing; D024802:Nurse's Role / Q000523:psychology; D009723:Nurse-Patient Relations; D015399:Nursing Research / Q000941:ethics*; D009741:Nursing Staff, Hospital / Q000941:ethics / Q000523:psychology; D016530:Orthopedic Nursing / Q000941:ethics; D010067:Ownership / Q000941:ethics; D010344:Patient Advocacy / Q000941:ethics; D026684:Personal Autonomy; D011209:Power, Psychological; D012107:Research Design; D012108:Research Personnel / Q000941:ethics; D011795:Surveys and Questionnaires