Involving survivors of trauma and human rights abuses in research – reflections from a preliminary enquiry with Helen Bamber Foundation clients
As an evidence-based organisation, research is an important part of the Helen Bamber Foundation’s work. We participate in and conduct research to continue learning what support, treatment and services are best for survivors we work with, to gather evidence to challenge and change the systems and policies that further harm survivors and to collectively bear witness to the experiences of our clients.
However, we recognise the historical issues surrounding traditional research methods, including the risk of being extractive and replicating unequal power dynamics for survivors. HBF is committed to consistently improving our research practices and doing research to the highest standard of trauma-informed practice. Part of this includes listening and learning from our clients and people with lived experience.
We conducted a small preliminary internal enquiry and spoke to 14 clients about their perspectives of research in general, experiences of research at the Helen Bamber Foundation, barriers to participation, and whether, or how they wanted to be more involved in the research. From this we shared our reflections on best-practice and a list of recommendations for engaging with survivors of trauma and human rights abuses in research.
A summary of recommendations
1. Research priorities
Organisations should co-produce research agendas and priorities with experts by experience (EBEs) and avoid researcher-led assumptions. We found that participants’ priorities tended to relate to current structural and social issues (e.g. asylum processes, housing, education, stigma), rather than focusing primarily on past trauma.
2. Education about research aims and process
Understanding of research varied widely within this group. There is a clear need for researchers to explain the research vocabulary, purpose, process and implications to survivors clearly. Researchers need to ensure that the research environment does not replicate any aspect of adversarial interview/interrogative techniques that survivors may have experienced in other contexts. A key element here is to offer potential participants as much choice and control over the manner of their participation as possible.
3. Informed consent
Consent should be treated as ongoing and actively supported. Any consent procedure should make it clear that deciding not to take part is a valid choice, and that this choice is understood and respected by researchers. Given some survivors’ experience of extreme disempowerment and human rights violations, the right to not answer questions, and to withdraw will need to be actively emphasised. There should be no expectation that people would want to discuss past traumas in a research context and that their agency over when, where and how and to whom they choose to revisit the past should be privileged and prioritised.
4. Tackling engagement barriers and appropriate compensation
Clients told us that their efforts and contribution need to be valued and remunerated with appropriate compensation. In the light of multiple practical needs and priorities, multiple modes of participation should be offered, with attention to confidentiality, and the use of trusted interpreters.
5. Investment in EBEs and their skill development
Survivors involved as peer researchers need training, administrative support, and wellbeing support, including supervision. EBEs should feel an equal part of the research team.
Please read the article for full recommendations and reflections
How has this shaped our research at HBF?
Research Guidelines: We have incorporated insights from this enquiry, alongside learning from our ongoing research projects, into our Research Guidelines, which set out our research principles and our expectations when working with researchers.
Research Flyer: We have also created a research flyer, informed and adapted by lived-experience consultants and a client working group. The aim of this flyer is to clearly explain the purpose of research and what clients can expect from participation.
Lived experience led research: We have made considerable progress towards the meaningful involvement of people with lived experience in our research. We now have two people with lived experience on our research committee and have established a client working group to shape our participatory research policies. We are also moving into the next stage of our fully co-produced research project and will be sharing a blog about our work so far soon.