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Exploring the motivations of patients with type 2 diabetes to participate in clinical trials: a qualitative analysis.
Research Involvement and Engagement Pub Date : 2016-12-12 , DOI: 10.1186/s40900-016-0050-y
Stephanie Estcourt 1 , Jill Epton 2 , Tom Epton 2 , Bijay Vaidya 3 , Mark Daly 3
Affiliation  

PLAIN ENGLISH SUMMARY Certain patient groups are reluctant to engage with clinical research and consequently findings are not always truly representative of the wider population. With the emphasis on evidence-based clinical practice, clinical research as a core activity for the National Health Service (NHS) and the rising prevalence of diabetes within the United Kingdom (UK) it is important to understand what motivates people to volunteer for research in diabetes and identify the barriers to this involvement. This research interviewed 12 people with type 2 diabetes who had previously taken part in diabetes clinical trials. The transcripts of these interviews were analysed to identify themes that informed the study findings.There were wide ranging reasons for participating in clinical trials. Both altruistic and self-interest motivation were universally expressed. The thought of helping others was a powerful experience but for some there was a sense of duty to volunteer especially if they had benefited from NHS care. Participating was empowering, with extra access to healthcare professionals, practical information and support for their condition. Coping with the logistics of being in a trial relied upon a strong network of family and friends. Some felt anxious at the end of the trial having been supported during the research and appreciating the camaraderie of belonging to a group or team.This study provides insights into the motivations and barriers to involvement in clinical research in type 2 diabetes helping researchers to encourage and support more volunteers in clinical trials. ABSTRACT Background Certain patient groups are reluctant to engage with clinical research and consequently findings of the research are not always truly representative of the wider population. This, together with a growing prominence of evidence-based clinical practice, an increasing emphasis of clinical research as a core activity for the NHS and the rising prevalence of diabetes within the UK population, requires an understanding of motivations and barriers for patients consenting to participate in diabetes clinical trials.Methods To understand patients' motivations for participating in clinical trials in type 2 diabetes. We conducted a qualitative study involving 12 participants with type 2 diabetes with previous involvement in clinical trials. Individual, tape-recorded, semi structured interviews were conducted to explore motivations and experiences of the participants. We carried out thematic content analysis to identify themes, from which theoretical interpretations were formed.Results There were wide ranging reasons for participating in clinical trials. We identified 3 key themes: (1) Motivations ranged from altruism to self-interest; (2) participation in clinical trials was an empowering experience; and (3) key to participation was a strong network of support.Conclusion Patients are motivated to participate in clinical trials by a sense of altruism coupled with self-interest. This self-interest centres on the belief that participation would be an informative and empowering experience with increased access to healthcare professionals. However the ability to cope with the logistics of being in clinical trials relies upon an extensive and reliable network of support from family, friends, work colleagues and employers, together with a collaborative approach to their care from the researchers and their usual healthcare providers.

中文翻译:

探索 2 型糖尿病患者参与临床试验的动机:定性分析。

简明英语摘要 某些患者群体不愿参与临床研究,因此研究结果并不总是能真正代表更广泛的人群。随着对循证临床实践的重视、临床研究作为国家卫生服务 (NHS) 的核心活动以及英国 (UK) 糖尿病患病率的上升,了解是什么促使人们自愿参与研究非常重要糖尿病并确定这种参与的障碍。这项研究采访了 12 名曾参加过糖尿病临床试验的 2 型糖尿病患者。对这些访谈的记录进行分析,以确定为研究结果提供信息的主题。参与临床试验的原因多种多样。利他动机和自利动机都得到普遍表达。帮助他人的想法是一种强大的体验,但对于一些人来说,有义务做志愿者,特别是如果他们从 NHS 护理中受益。参与是授权,可以额外获得医疗保健专业人员、实用信息和对他们状况的支持。应对参与审判的后勤工作依赖于强大的家人和朋友网络。一些人在试验结束时感到焦虑,因为他们在研究期间得到了支持,并欣赏了属于一个团体或团队的友情。这项研究提供了对参与 2 型糖尿病临床研究的动机和障碍的见解,帮助研究人员鼓励和支持更多志愿者参与临床试验。抽象背景 某些患者群体不愿意参与临床研究,因此研究结果并不总是真正代表更广泛的人群。再加上循证临床实践的日益突出、作为 NHS 核心活动的临床研究日益受到重视以及英国人口中糖尿病患病率的上升,需要了解患者同意参与的动机和障碍在糖尿病临床试验中。方法 了解患者参与 2 型糖尿病临床试验的动机。我们进行了一项定性研究,涉及 12 名 2 型糖尿病患者,他们之前曾参与过临床试验。个人,录音,进行了半结构化访谈,以探索参与者的动机和经历。我们进行主题内容分析,确定主题,形成理论解释。结果参与临床试验的原因广泛。我们确定了 3 个关键主题:(1)从利他主义到自利的动机;(2) 参与临床试验是一种赋权体验;(3) 参与的关键是强大的支持网络。结论 患者参与临床试验的动机是利他主义和自身利益。这种自我利益的核心是相信参与将是一种信息丰富和赋权的体验,可以增加接触医疗保健专业人员的机会。
更新日期:2019-11-01
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