Reflecting on ‘Doing Better’: Inclusive and Accessible Qualitative Research Methods

When we do not include, or account for difference, in qualitative research studies, outcomes create insufficient data that limits innovations in practice, policy or legislation development. Accessibility and inclusion in qualitative research should accommodate all narratives, thus challenging the creation of epistemic and social injustice.

The goal of this special issue came about in response to Watharow and Wayland’s paper on inclusion of d/Deafblind participants in research (2022) generating conversations on intersectionality and representation of all people in qualitative research. The special issue is framed through Fricker’s, 2007 Epistemic Injustice: Power and the Ethics of Knowing. Acknowledging that true knowledge building can only occur if research is designed in socially just ways. Knowledge building must seek the standpoints and testimonies of the people and communities the knowledge seeks to serve.

Here, accessibility is defined by Titchkosky (2011) as a complex form of perception that organises socio-political relations between people in social space, and views accessibility as a mediator and leveller of power imbalances. So too, embracing a culture of inclusion, difference and disability, researchers must accept that, as part of a human spectrum, methodological adjustments and accessibility provisions should be made for different groups and individual as a normative process.

The 34 papers included in this special issue reflect on the continuum of learning required for, and with, qualitative researchers. Exalting that reflexivity is required for inclusive practices (Kulmala et al., 2024). Imploring researchers to go beyond universal design to ensure accommodations in research practices (Fischbein et al., 2024), participate in training (Dunn, 2023), ensure familiarity with assistive technologies (Wittich et al., 2023), and challenge acceptable thresholds of inclusion (Helig and Sandell Hardesty et al., 2024). As Harasym et al. (2024) and Walsh et al. (2024b) elevate; power and positionality need to be embraced.

The nuanced themes within the special issue, engage with questions of research design. Challenging the type of method chosen to shift discourse. Here, Whitehead (2023) reflects on the heavy reliance of quantitively research methods, that exclude autistic voices. Mueller and Baniya (2024) encourage researchers to understand cultural nuances in research translation, with reflection on ways to acknowledge input of participants, to generate trust and reciprocity (Shaw & Wickenden, 2024). Within the academy, inclusion of researchers with lived experience of disability to promote allyship and advocacy is needed at all levels (Martiniello & Wittich, 2024), Dembele and colleagues (2024) note that acknowledgment of co-researchers’ contributions should be the standard.

Truly accessible and inclusive research requires critical analysis of ethical process. James (2023) notes that informed consent, combined with cultural sensitivity when working in and for Indigenous communities, is required. So too, Boardsworth et al. (2024) emphasises the lack of culturally responsive research guidance in health technology design, essential for ethical inclusion of Indigenous populations. Researchers should also ensure that their approaches align with the values, traditions, and communication practices of the participants. (Phillipson-Puna et al., 2024). This involves acknowledging participant contributions in the findings and ensuring prior to publication that stories are portrayed authentically.

Wittich and colleagues (2023) caution against the involvement of third parties when seeking consent from participants with disability, and the need for all materials to be accessible without relying on individual request. To ensure processes remain ethical and feasible, Malmqvist et al. (2024) reminds researchers that participants from hard-to-reach groups can experience consultation fatigue, and that flexibility post-consent (when people choose how and when they participate) is required to reduce drop out and disengagement. Huang et al. (2024) further reinforces that work beyond formal consent, should be underpinned by a commitment to participant autonomy. Within research environments, Walsh et al., 2024b implore ethics committees to support flexible approaches that allow researchers to address unique challenges when working with disabled participants.

Research tools for data collection, were also identified by the papers included in the special issue. Bodman and Garista (2023) reflect on authentic expression of experiences and emotions through creative approaches such as Rug Methodology. Furthermore, design-based research methodology (Stockless & Brière, 2024), ’think aloud yarns’ when engaging with Aboriginal and Torres Strait islander communities (Gall et al., 2023) and the innovative use of podcasts (Treco & Jordan, 2024)) is also shared. Philipson echoes these approaches and broadly calls for culturally aligned research approaches for Indigenous participants.

Specifically, Bouzioti (2023) proposes an interview schedule designed to make phenomenological interviews more accessible. Verhage et al. (2024) notes that traditional recruitment and informed consent processes may alienate individuals with lower literacy. Utilising simplified language, phased consent, and recruitment in familiar, supportive environments can make participants feel comfortable and represented. Within the process, Emara (2023) highlights the need for already created tools (such as Q-DAS) to be improved to assist visually impaired researchers. Grabowski et al. (2024) suggests that disability arts projects can enhance participation. The process of engagement in qualitative interviews, also challenges the traditional spoken-word approaches – Wilson and Turner (2024) encourages researchers to collaborate with communication specialists, whereas Whitney et al. (2024) and Watharow and Wayland (2024) advocate for ‘think transcription’ to capture context, emotion and non-verbal cues. Allowing participants to choose the creative medium they use (Harasym et al., 2024) rather than enforcing the approaches of the researcher as being paramount.

The overarching message of this collection of papers is to generate thought and discussion on the intention of accessibility, being informed by a commitment to intersectionality. Croft et al. (2024) reminds readers that intersectional access is key to listening to marginalised voices, noting that high-level research participation for those with lived experiences in participatory research can help to overcome epistemic inequalities (River et al., 2023). The use of a disability justice framework (Lee-Rambharose et al., 2024) that values unique experiences and strengths of marginalised people and names systemic ableism, and racism is required. So too, when working with students with disability, the goal is to foster agency (Young & Clerke, 2024), and to respect and amplify community voices (van-den-Breemer et al., 2024). Researchers can create equitable interactions to amplify marginalized voices (Walsh, Harman, et al., 2024).

You will note, position statements about authors have been included in the issue, reflecting the importance of lived experience-led research. There is also expert knowledge that arises from the shared experiences between a lived-experience research team and participants. Lived experience researchers can assist ally-researchers in building their testimonial sensibility and awareness of a community’s characteristics and capabilities. Having lived experience research team members also brings expert-knowledge about cultural and/or linguistic aspects of communities that can impact qualitative methods and inclusion such as sign language or Indigenous ways of being and knowing. Qualitative research requires continual reflection and incorporation of community attitudes and sentiments, to ensure it moves at a pace consistent with lived experience expertise.

We hope you enjoy this special issue. Our intention is that it provides critical reflection and practical guidance on ways of ‘doing’ qualitative research through the lens of accessibility and inclusion. Our longer term vision is to reflect on ways in which these conversations become mainstream inclusions in all qualitative research, and that we continually seek ways to better understand our positionality and power in the creation and translation of knowledge.