Involving and Engaging People With Learning Disabilities in the DECODE* Research Project (*Data-Driven Machine-Learning Aided Stratification and Management of Multiple Long-Term Conditions in Adults With Intellectual Disabilities)

IF 2.5 4区 医学 Q2 HEALTH POLICY & SERVICES
Amy Faull, Sarah Rabbitte, Reza Kiani, Gyuchan Thomas Jun, Sonal Kuchadia, Heidi Neville, Amar Jobanputra, Satheesh Gangadharan
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Abstract

Some groups of people are underserved in research. This means that they do not take part in research as much as they should. People with learning disabilities do not often take part in research. There are lots of reasons for this, such as researchers not knowing how to (1) make research easy to understand for people with learning disabilities, (2) communicate well with them and (3) hold meetings in places that people can access easily. This paper talks about how the DECODE project included people with learning disabilities in Patient and Public Involvement (PPI) groups which meant that they were able to share their ideas as part of the research team. There were four PPI groups in DECODE: two groups for people with learning disabilities and two groups for family members and carers. Members from local learning disability networks joined the groups. Easy Read information leaflets and posters were used to support people to join the project. We were able to make adjustments so that people could keep coming to the groups. Regular meetings were held and taxis could be booked for people. PPI members had training about research and updates from the researchers about how their work was helping the project. PPI were involved from the start of the project's design. They supported us to make Easy Read information leaflets and told us what was difficult to understand. People with learning disabilities are able to take part in research when reasonable adjustments are made and when researchers take time to get to know people individually.

让学习障碍人士参与DECODE*研究项目(*数据驱动的机器学习辅助智力障碍成人多种长期状况的分层和管理)
一些人群在研究中得不到充分的服务。这意味着他们没有尽可能多地参与研究。有学习障碍的人不经常参与研究。造成这种情况的原因有很多,比如研究人员不知道如何(1)使研究对有学习障碍的人来说容易理解,(2)与他们沟通良好,(3)在人们容易到达的地方举行会议。本文讨论了DECODE项目如何将有学习障碍的人纳入患者和公众参与(PPI)小组,这意味着他们能够作为研究团队的一部分分享他们的想法。DECODE有四个PPI组:两个组为有学习障碍的人,两个组为家庭成员和照顾者。来自当地学习障碍网络的成员加入了这些团体。易读信息传单和海报被用来支持人们加入这个项目。我们能够做出调整,这样人们就可以继续加入我们的小组。定期举行会议,可以为人们预订出租车。PPI成员接受了有关研究的培训,并从研究人员那里获得了有关他们的工作如何帮助项目的最新信息。PPI从项目设计之初就参与其中。他们支持我们制作易读信息传单,并告诉我们什么是难以理解的。有学习障碍的人能够参与研究,只要做出合理的调整,并且研究人员花时间去了解每个人。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
CiteScore
4.10
自引率
5.90%
发文量
38
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