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

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.