Estcourt Stephanie, Epton Jill, Epton Tom, Vaidya Bijay, Daly Mark
1Department of Research & Development, Royal Devon & Exeter Hospital, G9 Child Health Building, Barrack Road, Exeter, EX2 5DW UK.
Patient Public Involvement Group Representatives, Exeter, UK.
Res Involv Engagem. 2016 Dec 12;2:34. doi: 10.1186/s40900-016-0050-y. eCollection 2016.
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.
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. 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. 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. 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.
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。鉴于强调循证临床实践、临床研究作为英国国家医疗服务体系（NHS）的核心活动日益重要，以及英国糖尿病患病率不断上升，了解促使人们自愿参与糖尿病研究的因素并找出参与的障碍至关重要。本研究采访了12名曾参与糖尿病临床试验的2型糖尿病患者。对这些访谈的文字记录进行分析，以确定形成研究结果的主题。参与临床试验的原因多种多样。利他动机和自身利益动机都普遍存在。帮助他人的想法是一种有力的体验，但对一些人来说，有自愿参与的责任感，特别是如果他们从NHS护理中受益。参与能赋予力量，可额外接触医疗保健专业人员、获取实用信息并获得针对其病情的支持。应对试验中的各种事务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，因为在研究过程中得到了支持，并且体会到了属于一个群体或团队的情谊。这项研究深入了解了参与2型糖尿病临床研究的动机和障碍，有助于研究人员鼓励和支持更多志愿者参与临床试验。
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。这一点，再加上循证临床实践日益突出、临床研究作为NHS的核心活动越来越受到重视以及英国人群中糖尿病患病率不断上升，需要了解患者同意参与糖尿病临床试验的动机和障碍。为了解2型糖尿病患者参与临床试验的动机。我们进行了一项定性研究，涉及12名曾参与临床试验的2型糖尿病患者。进行了单独的、录音的、半结构化访谈，以探讨参与者的动机和经历。我们进行了主题内容分析以确定主题，并据此形成理论解释。参与临床试验的原因多种多样。我们确定了3个关键主题：（1）动机范围从利他主义到自身利益；（2）参与临床试验是一种赋予力量的体验；（3）参与的关键是强大的支持网络。患者参与临床试验的动机是利他主义感与自身利益相结合。这种自身利益集中在这样一种信念上，即参与将是一次有收获且能赋予力量的体验，能增加接触医疗保健专业人员的机会。然而，应对临床试验各种事务的能力依赖于来自家人、朋友、同事和雇主的广泛而可靠的支持网络，以及研究人员和其常规医疗保健提供者对其护理的协作方式。
