An interpretative phenomenological analysis of the experience of neurodivergence self-diagnosis, as facilitated through social media

本研究的目的是：1.回顾关于神经分歧，成人自我诊断以及社交媒体对自我诊断过程的影响的文献。Qualitative通过一对一访谈和解释性现象学分析（IPA）深入分析各种问题，探索社交媒体使用促使神经分歧自我认同的成年人的生活经历。这种方法旨在探索人们如何理解：-成人神经分歧自我诊断的身份含义;社交媒体对这一过程的影响，以及人们如何使用社交媒体“内容”来更好地了解自己;诊断体验-特别是在数字空间与离线医疗保健空间-以及与服务提供相关的未满足需求。在整个过程中与利益相关者接触，确保持续的参与机制。第一阶段包括遵循联合BI指南进行协议范围界定审查。研究方案将进行预注册。该项目的主要研究包括对社交媒体促进的成人自我诊断的体验性探索。理解边缘化的观点，特别是关于一个被污名化的兴趣领域-神经分歧和社交媒体都是挑衅性和政治化的问题-需要一种能够促进极其细微差别的数据的定性方法。解释现象学分析（IPA）是一种独特的方法，它提供了无与伦比的经验数据深度，并提供了对参与者对世界的感觉及其在其中的作用的归纳检查（Smith等人，2009年，2021年）。虽然许多关于神经分歧的研究试图确定诊断数字的趋势，并将神经分歧作为整体得出结论，但这项研究旨在探索个人经验，并了解参与者如何理解他们的经验（Neubauer等人，2019年）。研究目的为探讨神经分歧自我诊断与社交媒体使用的生活经验，并以一对一访谈的方式进行调查。鉴于IPA的目标是深度，而不是广度，开创性的文本建议小样本量-大约8-10名参与者的博士工作（史密斯等人，2021年）。这不是规定性的，但样本将被有目的地招募，以吸引那些根据社交媒体“内容”自我诊断为神经分歧者的个体。参与者招募将通过看门人网络在线分发广告海报进行。感兴趣的先验领域包括社交媒体内容转化为自我诊断的过程;身份;数字化与离线导航诊断;生活质量的感知变化。将编制一份与这些问题有关的专题指南，但访谈将是半结构化的，允许参与者牵头收集数据。然后用IPA对数据进行分析（Smith等人，二○ ○九年; 2021年）;这是一个反复的过程--不断检查和探索数据--产生以经验陈述为中心的多层次的细微差别的结果。分析最终会产生案例层面和群体层面的主题，这些主题构成了结果的基础。获取丰富而细致的经验数据是理解一个复杂问题的重要方法，这个问题包括神经分歧、自我诊断和社交媒体。利益相关者/PPIE参与将是这项研究的核心，并将确保持续参与-让成员有机会表达关注，突出紧急问题，并考虑更广泛的传播和研究结果的影响。这些研究结果的传播将在整个英国进行-通过各种媒体吸引越来越多的人投资于这一研究领域。

The aim of this research is to:1. Review the literature on the issues of neurodivergence, adult self-diagnosis, and impact of social media on the self-diagnosis process2. Qualitatively explore the lived experience of adults whose social media use prompted neurodivergent self-identification, via in-depth analysis of various issues using one-to-one interviews and interpretative phenomenological analysis (IPA). This approach seeks to explore how people make sense of:- the identity implications of adult neurodivergence self-diagnosis; the impact of social media on this process, and how people use social media 'content' to better understand themselves; the diagnostic experience - especially in digital spaces vs offline healthcare spaces - and unmet needs related to service provision.3. Engage with stakeholders throughout, ensuring an ongoing mechanism of involvement.The first stage involves a protocoled scoping review, following JBI guidelines. The study protocol will be preregistered. The project's main study comprises an experiential exploration of social media-facilitated adult self-diagnosis.Understanding marginalised perspectives, especially concerning a stigmatised area of interest - both neurodivergence and social media being provocative and politicised issues - necessitates a qualitative approach capable of facilitating extremely nuanced data. Interpretative phenomenological analysis (IPA) is a unique approach, which delivers unparalleled depth of experiential data and provides inductive examination of the sense participants make of the world and their role in it (Smith et al., 2009, 2021). While much of the research concerning neurodivergence seeks to identify trends in diagnostic numbers, and produce conclusions on neurodivergence as a monolith, this research aims to explore individual experience, and to understand how participants make sense of their experiences (Neubauer et al., 2019). The research aim of exploring lived experience of neurodivergence self-diagnosis and social media use will be investigated using one-to-one interviews. Given that the goal of IPA is depth, not breadth, seminal texts recommend a small sample size - roughly 8-10 participants for doctoral work (Smith et al., 2021). This is not prescriptive, but the sample will be purposively recruited to engage individuals who have self-diagnosed as neurodivergent based on social media 'content'.Participant recruitment will take place via online distribution of advertisement posters by a network of gatekeepers. A priori areas of interest include the process by which social media content translates into self-diagnosis; identity; navigating diagnosis digitally vs offline; perceived change in quality of life. A topic guide pertaining to these would be produced, however the interviews would be semi-structured, allowing for participant-led data collection. Data would then be subjected to analysis with IPA (Smith et al., 2009; 2021); an iterative process - with ongoing examination and exploration of the data - producing multi-levelled nuanced results centring around experiential statements. Analysis ultimately generates case-level and group-level themes, which form the basis of the results. The elicitation of rich and nuanced experiential data is a vital approach to understanding an issue as laden with complexities as one which comprises neurodivergence, self-diagnosis, and social media. This approach is novel in research pertaining to exploration of these emerging societal issues, which have been oft-reported yet seldom understood.Stakeholder/PPIE engagement will be central to this research, and will ensure ongoing involvement -allowing members the opportunity to voice concerns, highlight emergent issues, and consider wider dissemination and impact of study findings. Dissemination of these findings will take place throughout - engaging a growing number of people throughout the UK who are invested in this area of research, through a variety of media.