Wanting to better involve people with lived experience of complex trauma in primary care research? How can we make sure that the way we are involving people is trauma-informed?
A group of women with lived experience of complex trauma, a charity that supports them, GPs and researchers from the University of Bristol share their experiences of how co-production processes can be more trauma informed. This research is freely available here: http://doi.org/10.1111/hex.13795 with a Recommendations Table toward the end of the article that helps people think through how to put trauma-informed principles into involvement practices.
Not having to share personal experiences
Some people have a voice within health systems because of their qualifications or professional role. However, lived experience members may be part of a project because of the trauma and difficulties they have experienced. It’s important that people don’t feel they have to ‘validate’ being part of a project by sharing their experiences. As one Bridging Gaps member says: “You don’t have to wear your trauma as a badge, to say ‘I should be here’.”
If you are working with people with lived experience, think carefully before asking people to share their experiences. For people who’ve experienced trauma, this has the potential to be triggering and upsetting.
The Bridging Gaps team found that it was important to move away from sharing lived experiences, giving people full control to choose how, what and when to share, and whether they wish to share their expertise or experiences. An individual’s lived experience qualifies and enriches their opinion as a valued voice in developing services. That is valid, valuable and enough.
Making changes before more research
Those who need healthcare the most often have the worst access to it. Bridging Gaps started by using what was already known to improve access to primary care services for those who need it most, rather than collecting more research data about this. The priority was to make changes to services to improve access. There can be a huge sense of empowerment that comes from seeing tangible change from combined efforts.
Collaboration is key
It takes time and skills to build trusting relationships, particularly when people have been previously let down by services. Research teams need to understand historical distrust, acknowledge harm where it has happened, and where systems have failed.
Building connections with trusted community groups and organisations is crucial, alongside making sure that they are given sufficient resources to support working together. Researchers don’t have all the necessary skills or appropriate training, for example in safeguarding, or supporting someone who might be experiencing the effects of addiction or trauma. So it’s important to invest in appropriate collaborations, so that together you all have what is needed to support the group.
Balancing safety and empowerment
Using your lived experience to change services can be highly rewarding, but it can also involve some vulnerability and stepping out of comfort zones. While professionals should recognise and anticipate potential risks to participants’ psychological safety, care should be taken not to be so risk averse it restricts an individual’s opportunity to grow. Decisions about opportunities should be personalised, involve the individual and their expertise in how they manage their own risks alongside professional expertise.
Other key learning includes:
- Facilitators must be adequately experienced and trained to manage complexities of power dynamics in the room and ensure all voices are heard. They must also have good understanding of trauma, its impact on individuals and their interactions within the group.
- Adequate support must be provided to all group members both during and between sessions to ensure they don’t feel overburdened by the content of group discussions.
- Sufficient time must be built into processes to enable trusting relationships to be established within the group.
- Transparency must be maintained throughout the process, with clear standards of behaviour agreed upon by all members.
The team share further learnings in a recommendations table toward the end of the article in Table 9.
Dr Helen McGeown, one of the authors of the article and Honorary GP Consultant at the Centre for Academic Primary Care, University of Bristol, said:
“Relationships are at the heart of these co-production processes. It’s only by ongoing, long-term relationships with all partners that we hope to achieve delivery of care that is meaningfully ‘trauma-informed’. We call for adequate funding for the delivery of trauma-informed care and highlight the need for longevity of funding.”
Further details about the Bridging Gaps project are available on the project page. Watch out for a new website from the team in the next few months where they will be sharing more resources.
Bridging Gaps is funded through the NIHR School for Primary Care Research, Q Exchange by the Health Foundation and NHS England and NHS Improvement; and the NIHR Research Capability Funding through the NHS Bristol, North Somerset and South Gloucestershire CCG. It has also been funded by the Co-Production Collective (formerly UCL Centre for Co-production in Health Research) as part of the 2019/20 Phase 2 Pilot Projects.