User involvement is crucial in research to ensure that studies are relevant and impactful for the target population. Aphasia, a communication disorder, affects individuals' ability to understand and produce language, making it essential to explore factors that promote or hinder their participation in conversations. Despite the value of including persons with aphasia (PWA) in conversational data analysis, there is limited knowledge on how to do this effectively. Yet, PWA are experts in their own communication experiences and can offer unique insights.

In Dutch research projects COPACA and MAP, PWA were involved in all phases of research: planning, developing research questions and methods, analyzing data, disseminating findings, designing interventions, and evaluating outcomes. This presentation reflects on strategies that best support user involvement, particularly for individuals with communication disorders. We will share lessons learned and demonstrate that it is both feasible and valuable to involve PWA in the analysis of conversational data.

Studying conversations with individuals with communication disorders offers insights that can only emerge through a user-centred lens. However, meaningful involvement requires an environment that supports participation. The facilitation process itself can benefit significantly from the input of PWA and their families.

This presentation aims to provide guidance for researchers seeking to involve PWA in conversational analysis, emphasizing the importance of accessible methods and collaborative facilitation. By including their perspectives, research becomes more inclusive, impactful and grounded in lived experience.

In recent years, there has been an increase in Public Patient Involvement (PPI) in health research, including the Scandinavian countries, and it is recognised as an important element in health research (Biddle et al., 2021).

People with the language-led dementia, primary progressive aphasia (PPA), and their care partners report that being able to have conversations with family and friends is the most important outcome of treatment (Volkmer et al., 2024). The Better Conversations approach is a method underpinned by conversation analysis (CA) that aims to help people with communication difficulties maintain and improve conversations. Acknowledging the importance of PPI, Better Conversations with Primary Progressive Aphasia (BCPPA) was co-produced with people with PPA and care partners (Volkmer et al., 2021). In this presentation, we will use the BCPPA as an example when discussing PPI and CA. We will discuss how people with dementia and care partners can be involved in the development of a CA-based intervention and how PPI can be incorporated into the analysis process. Finally, it has been noted that the lack of funding, time and competence is a barrier to successful PPI in Norway (Aas et al., 2023). This issue will be discussed with examples from the Norwegian adaptation of the BCPPA.

In the past, autism research has been conducted by non-autistic researchers and not necessarily raised research questions and topics relevant to autistic people themselves. Recently, participatory research, grounded in the principle of 'nothing about us, without us,' has emerged within the field of autism studies with the goal of conducting research that aligns more closely with the preferences and priorities of the autistic community (Bottema-Beutel et al., 2021; Nicolaidis et al, 2019). In autism research, participatory research has been conceptualized as occurring when “the autistic community and researchers work together to design, carry out, and share research” (National Autism Indicator, 2025). Directions for participatory research approaches guide research on autism to “include, center, and be led by autistic people with a variety of skills, support needs, identities, experiences and ages” in all stages of the research process (National Autism Indicator). While several guidelines have been developed to successfully include autistic participants as co-researchers, less is known about how autism research conducted within a conversation analytic framework can benefit from involving autistic expertise. Involving or not involving autistic co-researchers in EMCA research raises methodological concerns. In this presentation, with reference to the early-stage project Autism in interaction (AUTIN), we ask: How can EMCA as an emic, inductive and bottom-up approach be informed by experiences of autistic co-researchers. What insights are lost when autistic co-researchers are excluded from EMCA research? How can the methodological principles of ‘participant perspective’ be conceptualised alongside the (frequently problematized) notion of the ‘double empathy problem’ (Milton, 2012)?

References
Bottema-Beutel, K., Kapp, S. K., Lester, J. N., Sasson, N. J., & Hand, B. N. (2021). Avoiding Ableist Language: Suggestions for Autism Researchers. Autism Adulthood, 3(1), 18-29. https://doi.org/10.1089/aut.2020.0014
Milton, D. E. (2012). On the ontological status of autism: The ‘double empathy problem’. Disability & society, 27(6), 883-887.
National Autism Indicators Report. Establishing a National Autistic-led Research Agenda. January 2025, Drexel University. https://policyimpactproject.org/establishing-a-national-autistic-led-research-agenda/
Nicolaidis, C., Raymaker, D., Kapp, S. K., Baggs, A., Ashkenazy, E., McDonald, K., Weiner, M., Maslak, J., Hunter, M., & Joyce, A. (2019). The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants. Autism, 23(8), 2007-2019. https://doi.org/10.1177/1362361319830523

This paper explores interactions between participants and researchers in a workshop as part of the research project “Living with cluttering”. The project aims to build knowledge and awareness about cluttering - a speech fluency disorder. Using video-recorded workshops, focus groups and everyday conversations as sources of data, the project combines the perspectives of people living with the speech fluency disorder (within their epistemic domain), with those observed through a conversation analytic (CA) lens on talk as it unfolds in interaction (within a CA-based epistemic domain).

The specific dataset analyzed for this paper is a researcher-led workshop using the Conversation-Analytic Role-play Method (CARM) to present interactional issues that had already been implicitly or explicitly raised in previously recorded data involving people with cluttering. Many of the issues raised could be conceptualized in terms of intersubjectivity, progressivity and repair-initiation, and our analysis reveals how such typical CA concepts were made relevant by the participants as part of describing their everyday interactions.

Using conversation analysis as method, this paper examines how CA-based findings and participants’ own perspectives may inform each other through analyzing the knowledge exchange that takes place in a CARM-type workshop. The particular data for this paper focuses on co-production of knowledge on cluttering-in-interaction; however, our analysis contributes to understanding what co-production of knowledge - and ‘user involvement’ - may look like through the research process more generally, in research on communication disorders and beyond. The paper also addresses some of the challenges in mixing epistemic domains in research.

Primary progressive aphasia (PPA) is a group of language-led dementias. Language difficulties are the first and most prominent symptom, other cognitive and behavioural symptoms can be present from symptom start and will become more present with time. The Better Conversations with Primary Progressive Aphasia (BCPPA) is a communication partner training program for people with PPA and communication partners (CP) (Volkmer et al., 2023). It is led by a speech and language therapist (SLT). As recommended in the Best Practice principles for working with people with PPA (Volkmer et al., 2022), planning for the future, including changes in decision-making capacity, is one topic addressed in BCPPA.

Four dyads (persons with PPA and CPs) participated in a study on BCPPA in Norway. All sessions were video recorded. For the current project, we are using conversation analysis to analyse the data about planning for the future.

Analysis showed that the topic is introduced gradually, beginning with future changes in general and narrowing down to changes in decision-making capacity. For three of the dyads, the sequence is closed after the SLT have provided generic information. For the fourth dyad, we find that the CP produces a series of requests for more information and that the SLT upgrades the answers for each request, which leads to a longer sequence about possible needs for support in the future.

Our preliminary analysis indicates that generic information is provided to all dyads, but specific information tailored to the dyad is only provided if requested by the dyad.

This presentation explores the challenges of adopting ethnomethodological conversation analysis (EMCA) as a participatory methodology in research with people living with dementia. I ask what it means to design a study with, rather than on, participants — from cohabiting and co-discovering the phenomenal field (as far as that is possible), to involving them in defining the research problem and contributing to analysis. In this light, the concept of “unique adequacy” (Garfinkel, 2002, 2006) — if it includes the lived experience of dementia — raises serious questions about the epistemic position of healthy researchers, for whom such adequacy may remain fundamentally out of reach.
At the heart of participatory design lies the creation of a relational foundation — enabling shared ownership, co-production of knowledge, and ongoing negotiation across study design, analysis, and interpretation. While this opens up deeply relational possibilities for discovery, it also raises persistent questions: What kinds of knowledge become accessible through co-designed participatory EMCA? How can analytic integrity be maintained while allowing people with dementia to meaningfully shape the research?
These challenges become even more acute when working with individuals in late-stage dementia, where severe cognitive and communicative difficulties complicate participation. How does the pathology of dementia shape the research process? And to what extent can researchers understand — or ethically claim to understand — the intent-meaning of participants’ conduct? I conclude by reflecting on the epistemological and ethical limits of understanding within EMCA when researchers lack the lived experience of cognitive disability.

Co-production refers to a collaborative approach through which researchers and non-academic partners work together throughout the research process. The aim of this discussion paper is to consider co-production practices – also referred to as, say, “user involvement”, “socially engaged research”, “knowledge mobilization”, “co-design”, etc. – in the context of conversation analytic research. I will map out some of the complexities in this domain, unpacking, on the one hand, considerations that may be general to all researchers (e.g., extending beyond linear research ethics processes to focus on achieving ethical, inclusive, equitable benefit and impact) and those that are raised in and through conducting specifically conversation analytic research. When partners are category members, whose analysis and whose co-production counts? How do weak and strong forms of ‘unique adequacy’ in ethnomethodology align with co-production? When the topic or output of research is in a designedly specialist (e.g., a piece of legislation; a new medicine, a type of battery) rather than ordinary (e.g., social interaction) domain, who has greater epistemic entitlement or access to the phenomenon? How do we consider the challenge of working ethically and impactfully in the field of human communication, where people’s lived experience may manifest as anecdata and where “pop psychology” versions of how communication works is so readily leveraged?