Paramasivam Abinethaa, Jaiswal Atul, Minhas Renu, Wittich Walter, Spruyt-Rocks Roxanna
DeafBlind Ontario Services, Newmarket, Ontario, Canada.
School of Optometry, Université de Montréal, Montreal, Quebec, Canada.
Arch Rehabil Res Clin Transl. 2021 Feb 22;3(2):100115. doi: 10.1016/j.arrct.2021.100115. eCollection 2021 Jun.
To synthesize evidence on existing informed consent/assent strategies and processes that enable the participation of individuazls with deafblindness or dual sensory impairment in research.
Five scientific databases (PubMed, MEDLINE, Cumulative Index to Nursing and Allied Health, Web of Science, and PsycINFO) and other sources such as Google Scholar, , and were hand-searched from January 2015 until July 2020.
Studies were selected using inclusion criteria of sensory and cognitive disabilities and focused on consent/assent strategies and processes in research within this population. Articles related to the medical or sexual consent processes were excluded.
An Excel spreadsheet was used to extract data from the eligible sources. Discrepancies were resolved in discussion with team members.
A total of 2163 sources were screened, and 16 articles were included in the review. Seven sources only examined consent strategies, whereas the remaining 8 included a combination of consent/assent and dissent strategies. Using thematic analysis, 3 key themes emerged: consent/assent strategies, researcher capacity, and capacity to consent tools. Key identified strategies included the accessibility of the consent/assent process, building relationships with participants and caregivers, identifying behavioral cues, and communication training for researchers.
Despite the absence of literature on consent/assent strategies within the population with deafblindness, the review found promising strategies applied to individuals with other cognitive or sensory disabilities that researchers can adopt. Researchers are encouraged to use best practices in creating an inclusive research environment to include individuals with deafblindness.
综合现有关于知情同意/同意策略及流程的证据，这些策略及流程能使患有聋盲或双重感官障碍的个体参与研究。
对五个科学数据库（PubMed、MEDLINE、护理及相关健康累积索引、科学引文索引和PsycINFO）以及其他来源（如谷歌学术等）进行手工检索，检索时间为2015年1月至2020年7月。
采用感官和认知残疾的纳入标准来选择研究，并聚焦于该人群研究中的同意/同意策略及流程。排除与医疗或性同意流程相关的文章。
使用Excel电子表格从符合条件的来源中提取数据。通过与团队成员讨论解决差异。
共筛选了2163个来源，16篇文章纳入综述。7个来源仅研究了同意策略，其余8个则包括同意/同意和不同意策略的组合。通过主题分析，出现了3个关键主题：同意/同意策略、研究人员能力和同意工具能力。确定的关键策略包括同意/同意流程的可及性、与参与者及照顾者建立关系、识别行为线索以及对研究人员进行沟通培训。
尽管缺乏关于聋盲人群同意/同意策略的文献，但综述发现了适用于其他认知或感官残疾个体的有前景的策略，研究人员可以采用。鼓励研究人员在创建包容性研究环境时采用最佳实践，以纳入聋盲个体。
