Researching with vulnerable groups: getting beyond participation
Public health research and evaluation often aims to understand the experiences of people facing the greatest inequalities. Yet these can be some of the hardest groups to involve in research.
People experiencing financial hardship, domestic abuse, discrimination, poor health, insecure housing, migration-related challenges or stigma may have good reasons for being cautious about researchers. They may also have less time, fewer resources and less capacity to participate.
So how can we design research that includes under-served groups safely, meaningfully and usefully?
Drawing on Bridge Research experience of research with people affected by food insecurity, eating disorders, domestic abuse and financial hardship, there are several lessons worth considering.
Recruitment is about relationships, not just numbers
A common mistake is to treat recruitment as a logistical exercise: develop an advert, identify a sample and recruit participants. For under-served groups, it is rarely that straightforward.
People may distrust researchers or public institutions, particularly where they have experienced discrimination or have previously shared their experiences without seeing meaningful change. They may also worry about the consequences of participating or disclosing sensitive information. Trusted organisations and community groups can therefore be invaluable.
In research with food hubs, for example, working alongside community organisations provided an important route into communities and helped researchers understand the context in which people were accessing support. The research subsequently involved co-producing an evaluation tool with food hubs, rather than simply collecting data from them.
What works: build relationships early, work through trusted organisations, and allow sufficient time for recruitment.
What doesn't: approaching community organisations shortly before data collection and expecting them simply to provide participants.
Make participation possible
Even when people want to contribute, practical barriers can prevent them from doing so.
Consider whether participants can realistically:
find the time to take part;
travel to the research location;
access the technology required;
understand lengthy information sheets;
participate in English;
afford to take time away from work or caring responsibilities.
These considerations have implications for budget as well as methodology. Translation, interpreters, participant payments, travel costs, childcare, accessible venues and additional time for relationship-building are not optional extras if they are necessary to enable participation.
Don't assume that everyone's experience is the same
One of the risks of researching with under-served groups is treating the group itself as homogeneous.
For example, research exploring eating disorders and disordered eating among people from minoritised ethnic communities highlighted the importance of understanding how experiences of seeking support can vary across communities.
People from minoritised ethnic backgrounds are less likely to access specialist eating disorder support, yet their experiences are often underrepresented in research.
This means we need to ask not simply “What is the experience of this group?”, but “Whose experience are we hearing, and who might still be missing?”
Think carefully about what you are asking people to share
Research involving people from under-served groups can involve sensitive and potentially distressing experiences.
As researchers, we need to consider whether asking people to repeatedly recount experiences of trauma, abuse, stigma or hardship is actually necessary to answer the research question.
Sometimes the most appropriate approach is not to focus exclusively on experiences of harm, but to explore agency, action and solutions.
For example, research with people affected by domestic abuse can explore not only what happened to them, but how people with lived experience respond to harm, support others, campaign for change and challenge the systems that contribute to harm. This can produce a richer account of people's lives while avoiding an overly deficit-based portrayal of under-served groups.
Collaboration should mean more than recruitment
Community organisations and people with lived experience should not simply become a route to participants.
Meaningful collaboration can involve communities in:
defining the research questions;
designing research materials;
deciding what is important to investigate;
interpreting findings;
identifying recommendations;
deciding how findings should be communicated.
Gemma's work with colleagues at the University of Leeds exploring the impact of food hubs is one example of this approach. Rather than imposing an evaluation framework, we worked with food hubs and local stakeholders to co-produce a practical tool for understanding and communicating their impact. The resulting tool was subsequently implemented across ten diverse food hubs.
Be honest about what research can and cannot do
Finally, researchers need to be honest about the limits of their work.
No study can represent every experience. Some people will be unable or unwilling to participate. Gatekeepers may influence who takes part. Translation and interpretation can affect meaning. And researchers themselves bring assumptions and power into the research process.
Good research therefore requires reflexivity and humility: being clear about whose voices have been heard, whose may be missing, and how decisions made during the research process have shaped the findings.
A practical checklist
Before starting an evaluation with under-served communities, ask:
Who might be missing from our research – and why?
What might make participation difficult or risky for them?
Who do they already trust, and can we build genuine partnerships with those organisations?
Have we budgeted properly for inclusive participation?
Are we asking people to recount difficult experiences when we could answer the question another way?
How will participants and communities benefit from taking part?
How will we make sure their experiences are represented fairly and not reduced to a simple story of vulnerability?
Research with under-served groups is rarely the easiest option. It can require more time, flexibility and thought than a conventional study. But when done well, it can produce evidence that is more relevant, more equitable and more useful for the people and communities that public health research is ultimately intended to serve.
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