Faculty of Social Sciences, University of Tampere, Tampere, Finland.
Faculty of Social Sciences, University of Helsinki, Helsinki, Finland.
Sociol Health Illn. 2020 May;42(4):809-824. doi: 10.1111/1467-9566.13064. Epub 2020 Feb 18.
Patient and public involvement activities bring 'lay participants' and their accounts of lived experiences to the centre of health service development and delivery. For individuals, these accounts can provide an important resource, offering a sense of control and an opportunity to re-frame past events. Furthermore, as involvement activities and the use of personal accounts have become more prominent, it is timely to examine the involvement process from the perspective of the 'lay participants'. Hence, the aim of this study is to explore how people become involved and how they construct the accounts of their lived experience. We analyse the stories of people with lived mental illness or caring experiences, who have become experts by experience (n = 13). We argue that becoming an expert by experience can help to re-contextualise past experiences and support the re-discovery of skills and expertise, leading experts by experience to construct both professionalised and politicised identities. The process has the potential to enforce narratives that portray illness experiences as motivators for social action and change. Additionally, we claim that the stories experts by experience share with health services and the public are not 'lay accounts' or ad hoc tales, but accounts constructed to serve specific purposes.
患者和公众参与活动将“非专业参与者”及其生活经历的描述置于卫生服务的发展和提供的中心。对于个人来说，这些描述可以提供重要的资源，赋予他们控制感，并为重新审视过去的事件提供机会。此外，随着参与活动和个人经历的使用越来越突出，现在正是从“非专业参与者”的角度来审视参与过程的时候了。因此，本研究的目的是探讨人们是如何参与进来的，以及他们是如何构建自己生活经历的描述的。我们分析了 13 名有生活经历的精神疾病或护理经验的人作为有经验的专家的故事。我们认为，成为有经验的专家可以帮助重新理解过去的经历，并支持重新发现技能和专长，使有经验的专家构建专业和政治化的身份。这一过程有可能强化将疾病经历描述为社会行动和变革的动机的叙述。此外，我们声称，有经验的专家与卫生服务机构和公众分享的故事不是“非专业描述”或临时故事，而是为了特定目的而构建的描述。
