Lived experience and research: from spaces of safety to spaces of bravery

How can we design inclusive models of research, which enable people with lived experience to conduct, and participate in research that values their contribution? The third event in NCRM's Critical Conversations series – organised by the centre's Collaborative and Participatory Methodological Special Interest Group – featured four presenters who challenged us to examine whose story ‘counts’ in research and how to make research spaces and dissemination inviting, affirmative and useful for participants. The following summary describes what an inclusive research model should address and provides advice for researchers on how they can make their design, methods and dissemination more accessible and inclusive for those involved through their lived experience.

Designing inclusive research models

Dr Olimpia Mosteanu advocated for inclusive research models and methods that acknowledge lived experience in all its complexity, and disrupt existing hierarchies of what counts as knowledge and how it is communicated. Olimpia asserted that inclusive research models should:

1. Validate and empower ways of getting to know communities that do not rely on limited notions of “detached” objectivity
2. Create more equitable processes of knowledge production and dissemination that are embedded at the community level
3. Harness community energy and build community wealth

However, systemic barriers make it difficult for researchers and experts with lived experience to disrupt traditional methodologies. In response, Olimpia challenged us to consider:

• Whose knowledge typically counts and how can we disrupt systems that privilege traditional methodologies and outputs/outcomes (e.g. peer reviewed articles, reports) rather than those that build community knowledge or social capital?
• How can we avoid co-opting stories of lived experience in ways that are tokenistic?

Knowledge is messy – stick with the trouble!

Our next three speakers had advice for researchers grappling with these issues.

Isaac Samuels from People’s Voice Media is a researcher with lived experience whose own participation in research inspired them to create better, more inclusive ways of research and consultation. Isaac asked us to remember that people are not the sum of one experience, rather they are the sum of many experiences. Similarly, our research should capture the “messy” and all the ways in which people’s experiences are part of their life. Applying this to research with children and young people, and quoting Donna Haraway, Professor EJ Renold inspired us to “stay with the trouble” of stories that don’t fit into neat boxes and advocated for the use of co-producing creative spaces with children and young people so that they can participate on their own terms.

Creating spaces of safety and bravery

Isaac Samuels challenged us to create spaces that are inclusive enough to be “spaces of bravery” as much as “spaces of safety”: centre research around lived experience and facilitate spaces where all participants feel able to reveal themselves and the trauma they may have faced. This is equally important for researchers with lived experience, whose insight informs their practice, but potentially risks reminding them of their own trauma.

So how might researchers make spaces safe for and with participants? Professor EJ Renold noted that what makes a space ‘safe’ is different for each individual. Also, what feels safe for a participant may change from one session to the next. Thus, it is an ongoing process that needs to be renegotiated at every stage of the research, in every fieldwork session.

Use creative, engaging participatory methods

Researchers often worry about how to make their research process engaging. As a highly experienced facilitator of research with children and young people, EJ recommends that researchers begin by co-producing their research with children and young people, from the formulation of the research questions to the methods they might use and the outputs they might create together. Researchers might begin by considering:

• Why might children and young people want to take part in research? What’s in it for them?
• Who gets to choose ‘what matters’ to children and young people? And how ‘what matters’ is communicated to others?

To maximise children’s participation, EJ suggests researchers involve children much more directly in the research process. EJ also questioned the reliance on voice as the only mode for capturing feelings, views and experiences. They advocated for how creative and participatory research methodologies can provide children and young people with multiple ways to express themselves. They shared an example from their Unboxing Relationships and Sexuality Education project which explores the potential power of the visual arts to communicate what matters to young people on a range of sensitive topics. For more information on this topic, read EJ’s paper ‘Feel what I feel’: making da(r)ta with teen girls for creative activisms on how sexual violence matters.

Visual methods

Using different media within the research process was also key to the research of Zaina Aljumma who has illustrated the content of her interviews with UK-based English teachers who are teaching adult refugees ad asylum seekers. Her visual methods of recording provide useful insight into the experiences of teachers and are accessible for all. Here is an example of one of her infographics:

Image credit: Zaina Aljumma

The session concluded with the call to provide the opportunity for people with lived experience to move from being perceived as passive providers of a single story to valued co-creators of authentic research, which has the potential to make a difference in real-world settings.

A collaborative Padlet was created during the critical conversation. Access the Padlet.