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

本研究的目的是：1.回顾有关神经分化、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。通过使用一对一访谈和解释性现象学分析(IPA)对各种问题进行深入分析，定性地探索使用社交媒体促进神经分化自我认同的成年人的生活经历。这一方法试图探索人们如何理解：-成人神经分化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”更好地了解自己；诊断体验--尤其是在数字空间与线下医疗空间--以及与服务提供相关的未得到满足的需求。始终与利益相关者接触，确保持续的参与机制。第一阶段涉及遵循JBI指南的协议化范围审查。研究方案将预先注册。该项目的主要研究包括对社交媒体促成的成人自我诊断的经验性探索。理解边缘化的观点，特别是关于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深度的经验数据，并提供了对参与者对世界的意义及其在其中的角色的归纳检验(Smith等人，2009,2021)。虽然许多关于神经分歧的研究试图确定诊断数字的趋势，并得出关于神经分歧作为一个整体的结论，但这项研究的目的是探索个体体验，并理解参与者如何理解他们的体验(Neubauer等人，2019年)。研究目的是探索神经分化、自我诊断和社交媒体使用的生活体验，将采用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，开创性的文本建议样本规模较小--大约8-10名参与者从事博士工作(Smith等人，2021年)。这并不是说明性的，但样本将被有目的地招募到那些根据社交媒体“内容”自我诊断为神经分裂的人。参与者招募将通过一个看门人网络在线分发广告海报进行。人们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；身份认同；数字与离线诊断的导航；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，但面谈将是半结构化的，以便由参与者牵头收集数据。然后，数据将与IPA一起进行分析(Smith等人，2009年；2021年)；这是一个迭代过程--不断审查和探索数据--产生以经验陈述为中心的多层次细微差别的结果。分析最终产生案例级和组级主题，它们构成结果的基础。对丰富而细致入微的经验数据的启发是理解一个像神经分歧、自我诊断和社交媒体这样复杂的问题的重要方法。这种方法在与探索这些新出现的社会问题有关的研究中是新颖的，这些问题经常被报道，但很少被理解。持有者/PPIE参与将是这项研究的核心，并将确保持续参与-使成员有机会表达关切，突出紧急问题，并考虑研究结果的更广泛传播和影响。这些发现的传播将在整个过程中进行-通过各种媒体，吸引越来越多的英国人参与这一领域的研究。

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.