School of Sociology and Social Work, University of Tasmania, Launceston, Australia.
Qual Health Res. 2011 Sep;21(9):1273-82. doi: 10.1177/1049732311405216. Epub 2011 Apr 7.
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.
随着临床试验对科学证据重要性的重视日益增加，定性研究被用来从参与者的角度深化我们对研究的理解。对于患有慢性病的人来说，参与研究可能会给他们已经被医疗和护理问题压得喘不过气来的生活带来额外的负担，而且当研究要求他们以不同的方式思考自己的疾病并延长参与时间时，我们对参与者的动机知之甚少。我们采访了参与慢性阻塞性肺疾病试验的参与者，该试验是一项慢性疾病自我管理（CDSM）计划。我们发现，人们出于利他的原因参与研究与其他研究有相似之处。然后，我们扩展了对人们参与研究的原因的理解，以探讨他们如何参与研究。我们认为，基于主导的自愿主义或利他主义价值观的动机对于试图证明 CDSM 策略益处的研究人员来说可能会出现问题。
