The Qualitative Open Mic

Qualitative researchers are increasingly turning to creative methods and methodologies to expand perspectives on health, healthcare, and divergent ways of being. In this episode Sohail speaks to Kai Syng Tan and Georgia Thom, both practising artists and researchers, about how neurodivergence and art work together to explore marginalised experiences of the world including trans life, neurodivergence, and their intersections, amid the resurgence of the far right.

Autistic people have a whole constellation of communication needs and styles, but these are not always understood or accommodated by researchers. This month, Sohail interviews Alyssa Hillary Zisk about Augmentative and Alternative Communication (AAC): what it is, the range of communication profiles it can help accommodate, and how qualitative inquiry into autistic experiences helped name these to increase understanding.

Neurodiversity and neurodivergence have been revolutionary ideas in autism research, and later in ADHD. But how do they apply to other diagnoses or experiences? This month Sohail speaks to Dr Daria Khanolainen, a dyslexia researcher in Finland, about qualitative dyslexia research, self-esteem, and pathologising reading difficulties.

We are re-publishing Bee Damara's interview with the Qualitative Open Mic, which had been temporarily removed from our archive and was part of the Anti-racist Qualitative Health Research series. Bee speaks about critical race theory in modern slavery and human trafficking research, discussing her experiences working on the modern slavery outcome set project at KCL. She talks about the importance of grounding research in anti-racist theories, and how acknowledging historical and global inequalities can improve the quality and relevance of findings.

Parents get a lot of advice, and a lot of it is conflicting or inappropriate. Parenting research aims to be better than that – but is it, when neurodivergence is in the mix? This month Sohail speaks to Dr Victoria Castle about her participatory research using innovative qualitative methods to co-develop ways to measure parenting that work for neurodivergent parents and parents of neurodivergent children.

Autoethnographers use their personal experiences to explore wider issues, relationships, or situations. So what happens if you experience the world differently? Sohail speaks to Dr Elizabeth Hauke about autoethnography, inclusive education and assessment, and denormativising the university.

Sohail interviews Dr Hannah Belcher, author of Taking off the Mask and lecturer in user-led research at King's. They cover some of the ethical complexities of the neurodiversity framework; how the specifically gendered nature of mainstream autism research has overlooked the experiences of women and non binary people; and how all this plays into issues around masking, social pressure, and mental health.

Has qualitative research been complacent about its ability to highlight marginalised perspectives? Sohail speaks to Dr Morénike Giwa Onaiwu about forthcoming anthology "Neurodiversity en Noir" and platforming Black neurodivergent voices.

Why is the funding agenda for autism research so far from what the communities concerned want? There’s a long tradition of prioritising neurobiological and genetic work over qualitative, but how did it get this way? Sohail interviews Dr Monique Botha about citational justice, emotion in research, participatory research accessibility, and why letting community-led neurodivergence research out of its silo would benefit neurotypical and neurodivergent populations alike.

Welcome to Series 7 of the Qualitative Open Mic! This series discusses the many ways neurodivergent perspectives can improve the quality, insights and impacts of qualitative health research, and what learnings this can provide for neurotypical and neurodivergent researchers alike. It showcases the critical role of researchers with ADHD, autism, dyspraxia and other neurodivergent experiences in shaping research and knowledge production. In this first episode we discuss how mainstream theories of autism have missed the mark by failing to qualitatively explore internal autistic worlds. Sohail speaks to legend among autistic autism researchers Dr Damian Milton about his formulation of this issue, the double empathy problem, and its broader implications for neurodivergent and neurotypical-led research in neurodiversity and beyond. Damian also discusses the importance of autistic-led spaces for surviving academia as an autistic academic, through the work of the Participatory Autism Research Collective.

In an academic landscape dominated by formality and jargon, Johnny Saldaña brings a refreshingly raw perspective with his ideas on 'Blue Collar Qualitative Research'. We speak to him about how to challenge the ivory towers of academia. We also explore his 'kick-ass' article that tackles positionality, voice, ethics, and many other foundational aspects of qualitative research.

Why are there limited voices from sanctuary seekers in qualitative research about migrant health? Tesfalem Yemane and Hyab Yohannes bring a vital perspective on 'refugee-led scholarship', dissecting the challenges and significance of broadening the scholarly space to include those who have first-hand experience seeking sanctuary.

The involvement of service users in research holds transformative potential, but what happens when it becomes mere tokenism? When is it better to step away? With insights from the National Survivor User Network, we discuss the critical line between genuine engagement and superficial involvement, seeking ways to ensure research remains grounded, relevant, and truly collaborative.

Amidst the ongoing occupation and genocide in Palestine, how do qualitative health researchers navigate their work and find their voice? What kind of research is it possible or ethical to do under siege? This episode, Sohail speaks to Weeam Hammoudeh, Zeina Amro, and Layth Hanbali. They delve into the courage, resilience, and ethical considerations that researchers from this region grapple with, touching upon the broader implications for academic freedom and advocacy.

Watch this space for the next episode in our controversies series - we're translating the transcript for this one into Arabic so we've got a slight delay and will have it out next week. Join us then for "Health research under siege: being a qualitative researcher in Palestine".

In October 2023, then-minister Michelle Donelan accused members of UK Research and Innovation's EDI committee of holding "extremist views" based on their social media comments on Palestine. She was subsequently forced to retract her statement, but the response from UKRI raised broader questions about whether and how government should be able to influence research. Peter and Sohail get into the details of this debate, covering culture wars, litigious authors, and more.

In this episode we challenge the misconception that qualitative research is too slow and narrow to influence emergency response planning. Despite the common preference for quantitative data in crises, we spotlight the irreplaceable insights that qualitative research provides—insights into human behaviour, cultural context, and community dynamics that are crucial during emergencies. Join us as we explore real-world examples where nuanced, qualitative data has informed swift, culturally sensitive, and effective emergency responses, proving that in the heat of the moment, every narrative counts.

Sohail speaks to Tiarna Lee to explore the frontier of AI's role in health research.explore the frontier of AI's role in health research. While technology offers innovative ways to approach analysis, it comes with its unique set of challenges. From ethical considerations to methodological accuracy, join us as we dissect the potential and pitfalls of integrating AI in research. We ask, “can you have qualitative health research without the heart and soul?” Tiarna is a third year PhD student at the School of Biomedical Engineering & Imaging Sciences. Her research focuses on evaluating fairness and biases in AI used for cardiac imaging. In her work, she has found that models trained with imbalanced datasets have a worse performance on underrepresented subjects, often minority ethnicities and females. She is currently aiming to find the sources of these biases so that she can then find a method to address and mitigate them.

In July 2023, all of the 44 editors of acclaimed Critical Public Health journal simultaneously resigned, citing concerns about Taylor and Francis' pricing system. They went on to found a new independent journal, the Journal of Critical Public Health. We speak to an editorial board member who resigned, Kirsten Bell. Kirsten sheds light on the intricate dynamics between profit, pricing, and the neoliberal influence on qualitative health research.

This episode reflects on how lived experience can engender insights, support the interpretative process and enhance the trustworthiness of qualitative research. We consider the different kinds of experience that can enhance this process, the limits of individual lived experience, and what this means for researchers who don’t have personal experience of the phenomenon under study.