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Participating in research: exploring participation and engagement in a study of self-management for people with chronic obstructive pulmonary disease

Citation

Willis, KF and Robinson, A and Wood-Baker, R and Turner, P and Walters, EH, Participating in research: exploring participation and engagement in a study of self-management for people with chronic obstructive pulmonary disease, Qualitative Health Research, 21, (9) pp. 1273-1282. ISSN 1049-7323 (2011) [Refereed Article]


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Copyright Statement

Copyright © 2011 SAGE Publications

DOI: doi:10.1177/1049732311405216

Abstract

With growing emphasis on the importance of scientific evidence through clinical trials, qualitative studies have been used to deepen our understanding of research from participants’ perspectives. For people with a chronic illness, research participation could represent an additional impost on lives already overwhelmed with medical and care issues, and little is known about participants’ motivations when the research requires them to think differently about their illness and participate over an extended period. We interviewed participants with chronic obstructive pulmonary disease participating in a trial of a chronic disease self-management (CDSM) program. Our finding that people participate in research for altruistic reasons has similarities with other studies. We then extend our understanding of why people participate to explore how they participate. We argue that motivation based on dominant voluntaristic or altruistic values can be problematic for researchers attempting to demonstrate the benefits of CDSM strategies.

Item Details

Item Type:Refereed Article
Keywords:altruism; illness and disease, chronic; relationships, patient-provider; research participation
Research Division:Medical and Health Sciences
Research Group:Cardiorespiratory Medicine and Haematology
Research Field:Respiratory Diseases
Objective Division:Health
Objective Group:Clinical Health (Organs, Diseases and Abnormal Conditions)
Objective Field:Respiratory System and Diseases (incl. Asthma)
Author:Willis, KF (Dr Karen Willis)
Author:Robinson, A (Professor Andrew Robinson)
Author:Wood-Baker, R (Professor Richard Wood-Baker)
Author:Turner, P (Associate Professor Paul Turner)
Author:Walters, EH (Professor Haydn Walters)
ID Code:72565
Year Published:2011
Web of Science® Times Cited:16
Deposited By:Menzies Institute for Medical Research
Deposited On:2011-08-29
Last Modified:2012-03-26
Downloads:0

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