Division of Nursing, Midwifery, and Social Work, Faculty of Biology, Medicine and Health, Manchester Academic Health Science Centre, SORD (Social Research With Deaf People), School of Health Sciences, University of Manchester, Jean McFarlane Building, Oxford Road, Manchester, M13 9PL, UK.
Patient. 2018 Feb;11(1):9-16. doi: 10.1007/s40271-017-0260-x.
In general populations, it has been recognised that patients play a key role in the quality of their own healthcare. However, the idea of realising patient-centred outcomes for the signing Deaf community, who experience the world in a visual way, raises some challenging issues that are rarely acknowledged. Using published research and translational health projects involving Deaf people both in the UK and internationally, this article discusses the challenges of realising patient-centred outcomes for Deaf people who are sign language users. The discussion includes an examination of: barriers to accessing healthcare for Deaf people; the impact of an insufficient acquisition of knowledge about health-related issues; Deaf people's limited fund of information; not recognising Deaf people's values and citizenship rights; and challenges in gathering Deaf people's reported outcomes. We contend that without including Deaf people in shaping the healthcare experience for them, whether at an interpersonal level of patient engagement or at a structural level, the concept of fulfilling patient-centred outcomes for Deaf people is not achievable.
在一般人群中，人们已经认识到患者在自身医疗保健质量中起着关键作用。然而，对于以视觉方式体验世界的失聪群体来说，要实现以患者为中心的结果，这一想法引发了一些很少被承认的具有挑战性的问题。本文使用已发表的研究和涉及英国和国际上失聪人群的转化健康项目，讨论了实现使用手语的失聪患者以患者为中心的结果所面临的挑战。讨论包括以下方面：失聪患者获取医疗保健的障碍；对健康问题相关知识获取不足的影响；失聪者有限的信息储备；不承认失聪者的价值观和公民权利；以及收集失聪者报告结果的挑战。我们认为，如果不将失聪者纳入塑造他们的医疗保健体验，无论是在患者参与的人际层面还是在结构层面，实现以患者为中心的失聪者结果的概念都是无法实现的。
