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

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 process
2. 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.