Young Alys, Ferguson-Coleman Emma, Keady John
University of Manchester, UK.
Dementia (London). 2018 Nov;17(8):1001-1010. doi: 10.1177/1471301218789567.
This article concerns Public and Patient Involvement practice with Deaf people who are sign language users. It draws on the experience of public and patient involvement in a project concerning Deaf people's lived experience of dementia and focusses on: (i) creating the conditions of trust in circumstances of unrecorded knowledge; (ii) being a community insider as a necessary but not sufficient condition without public and patient involvement and (iii) community consultation as influencing positive public and patient involvement practice. It sets out a series of recommendations for authentic public and patient involvement practice with Deaf sign language users linked to each of these themes before considering more generally barriers to Deaf people's involvement in public and patient involvement in health and social care research.
本文关注的是与使用手语的聋人开展公众及患者参与实践。它借鉴了公众和患者参与一个关于聋人痴呆生活经历项目的经验,并着重于:(i)在知识未记录的情况下营造信任条件;(ii)作为社区内部人员是公众和患者参与的必要但不充分条件;(iii)社区咨询对积极的公众和患者参与实践的影响。在更全面地考虑聋人参与健康和社会护理研究中的公众及患者参与的障碍之前,本文针对与这些主题相关的聋人手语使用者的真实公众及患者参与实践提出了一系列建议。