PDF(Pubmed)
Abstract：
This article discusses the barriers that prevent deaf people from participating in clinical trials and offers recommendations to overcome these barriers and ensure equal access to study participation.
Between April and May 2022, we conducted six focus groups with 20 deaf adults who use American Sign Language, all of whom had previous experience as research study participants. Focus group prompts queried community awareness of clinical trial opportunities, barriers and facilitators to deaf people\'s participation in clinical trials, and recommended resources to improve clinical trial access. This qualitative focus group data is supplemented by survey data gathered from 40 principal investigators and clinical research coordinators between November 2021 and December 2021. The survey queried researchers\' prior experiences with enrolling deaf participants in clinical trials and strategies they endorse for enrollment of deaf participants in future clinical trials.
Focus group participants unanimously agreed that, compared to the general hearing population, deaf sign language users lack equivalent access to clinical trial participation. Reported barriers included lack of awareness of clinical trial opportunities, mistrust of hearing researchers, and refusal by clinical trial staff to provide accessible communication (e.g. denial of requests for sign language interpreters). Survey data from 40 principal investigators and clinical research coordinators corroborated these barriers. For example, only 2 out of 40 survey respondents had ever enrolled a deaf person in a clinical trial. Respondents indicated that the most helpful strategies for including deaf sign language users in future clinical trials would be assistance with making recruitment information accessible to deaf sign language users and assistance in identifying qualified interpreters to hire to help facilitate the informed consent process.
The lack of communication accessibility is the most common factor preventing deaf sign language users from participating in clinical trials. This article provides recommendations for hearing researchers to improve deaf people\'s access to clinical trials moving forward, drawing from mixed-methods data.
Between April and May 2022, we conducted six focus groups with 20 deaf adults who use American Sign Language, all of whom had previous experience as research study participants. Focus group prompts queried community awareness of clinical trial opportunities, barriers and facilitators to deaf people\'s participation in clinical trials, and recommended resources to improve clinical trial access. This qualitative focus group data is supplemented by survey data gathered from 40 principal investigators and clinical research coordinators between November 2021 and December 2021. The survey queried researchers\' prior experiences with enrolling deaf participants in clinical trials and strategies they endorse for enrollment of deaf participants in future clinical trials.
Focus group participants unanimously agreed that, compared to the general hearing population, deaf sign language users lack equivalent access to clinical trial participation. Reported barriers included lack of awareness of clinical trial opportunities, mistrust of hearing researchers, and refusal by clinical trial staff to provide accessible communication (e.g. denial of requests for sign language interpreters). Survey data from 40 principal investigators and clinical research coordinators corroborated these barriers. For example, only 2 out of 40 survey respondents had ever enrolled a deaf person in a clinical trial. Respondents indicated that the most helpful strategies for including deaf sign language users in future clinical trials would be assistance with making recruitment information accessible to deaf sign language users and assistance in identifying qualified interpreters to hire to help facilitate the informed consent process.
The lack of communication accessibility is the most common factor preventing deaf sign language users from participating in clinical trials. This article provides recommendations for hearing researchers to improve deaf people\'s access to clinical trials moving forward, drawing from mixed-methods data.
摘要：
目的：本文讨论了阻碍聋人参与临床试验的障碍，并提出了克服这些障碍并确保平等参与研究的建议。
方法：在2022年4月至5月之间，我们对20名使用美国手语的聋哑成年人进行了六个焦点小组，所有这些人以前都有作为研究参与者的经验.焦点小组提示询问社区对临床试验机会的认识，聋人参与临床试验的障碍和促进者，和建议的资源，以改善临床试验的访问。这个定性的焦点小组数据补充了2021年11月至2021年12月期间从40名主要研究者和临床研究协调员收集的调查数据。该调查询问了研究人员在临床试验中招募聋人的先前经验以及他们认可的在未来临床试验中招募聋人的策略。
结果：焦点小组参与者一致认为，与普通听力人群相比，聋人手语使用者缺乏同等的临床试验参与机会。报告的障碍包括缺乏对临床试验机会的认识，对听力研究人员的不信任，和临床试验人员拒绝提供可访问的通信（例如拒绝手语翻译的请求）。来自40名主要研究者和临床研究协调员的调查数据证实了这些障碍。例如,40名调查受访者中只有2人曾在一项临床试验中招募过聋人.受访者表示，将聋人手语使用者纳入未来临床试验的最有用的策略将是帮助聋人手语使用者获得招聘信息，并帮助确定合格的口译员以帮助促进知情同意过程。
结论：缺乏沟通可及性是阻碍聋人手语使用者参与临床试验的最常见因素。本文为听力研究人员提供了建议，以提高聋人对临床试验的访问，从混合方法数据中提取。
方法：在2022年4月至5月之间，我们对20名使用美国手语的聋哑成年人进行了六个焦点小组，所有这些人以前都有作为研究参与者的经验.焦点小组提示询问社区对临床试验机会的认识，聋人参与临床试验的障碍和促进者，和建议的资源，以改善临床试验的访问。这个定性的焦点小组数据补充了2021年11月至2021年12月期间从40名主要研究者和临床研究协调员收集的调查数据。该调查询问了研究人员在临床试验中招募聋人的先前经验以及他们认可的在未来临床试验中招募聋人的策略。
结果：焦点小组参与者一致认为，与普通听力人群相比，聋人手语使用者缺乏同等的临床试验参与机会。报告的障碍包括缺乏对临床试验机会的认识，对听力研究人员的不信任，和临床试验人员拒绝提供可访问的通信（例如拒绝手语翻译的请求）。来自40名主要研究者和临床研究协调员的调查数据证实了这些障碍。例如,40名调查受访者中只有2人曾在一项临床试验中招募过聋人.受访者表示，将聋人手语使用者纳入未来临床试验的最有用的策略将是帮助聋人手语使用者获得招聘信息，并帮助确定合格的口译员以帮助促进知情同意过程。
结论：缺乏沟通可及性是阻碍聋人手语使用者参与临床试验的最常见因素。本文为听力研究人员提供了建议，以提高聋人对临床试验的访问，从混合方法数据中提取。
