A new paper has highlighted the vital role that Patient and Public Involvement and Engagement (PPIE) can play in designing research about childhood trauma, helping researchers create studies that are safer, more inclusive and more responsive to participants’ needs.
The study “Reflections on public involvement: Adoptees shaping trauma-informed early life adversity research”, was published in Research Square and supported by the NIHR Mental Health Translational Research Collaboration (MH-TRC) Mission.
The findings share how people with lived experience helped researchers develop a trauma-informed research study exploring the long-term effects of childhood trauma on mental health and physical health.
The work was carried out by researchers at the University of Manchester and the NIHR Biomedical Research Centre: Manchester as part of the NIHR MH-TRC Mission Children and Young People’s Mental Health workstream.
A two-hour online PPIE workshop brought together six adopted young adults aged 18 to 25, whose feedback was used to shape the design of a larger research project.
Childhood trauma, sometimes known as early life adversity, refers to difficult or distressing experiences in childhood that can have lasting effects on health and wellbeing. Researchers are increasingly interested in understanding how these experiences affect the brain, immune system and mental health throughout a person’s life. However, discussing traumatic experiences can be upsetting, making it essential that studies are designed with care.
The paper demonstrates how trauma-informed principles, which are commonly used in healthcare and psychological support services, can be applied to research. Trauma-informed approaches recognise the impact of trauma and aim to create environments that promote safety, choice, trust and empowerment.
The young people involved in the workshop reviewed plans for a study that included brain scans, blood tests, mental health interviews, cognitive assessments and questionnaires about trauma.
Their feedback led to several important changes. Concerns about lengthy interviews resulted in more flexible options, including shorter sessions and the choice of online or face-to-face appointments.
Participants also highlighted potentially distressing wording in questionnaires, prompting the research team to introduce additional safeguards. Anxiety about medical procedures informed a modular study design, allowing people to opt out of particular assessments without withdrawing from the research entirely.
The findings underline how PPIE can improve the quality of research, particularly when research involves sensitive topics such as trauma. By involving people with lived experience from the earliest stages, researchers were able to identify potential barriers, reduce the risk of distress and ensure that participants’ voices influenced key decisions.
Rather than simply consulting participants, the researchers worked collaboratively with the young people, several of whom became co-authors on the paper. Their insights helped create a research protocol that was more accessible, participant-centred and likely to support successful recruitment and engagement.
Study Principal Investigator, Professor Rebecca Elliott, said: “Hearing from young people with lived experience has been really important in shaping our research questions and methods”.
This was part of a wider piece of PPIE work, which also resulted in two co-produced two videos about their experiences of taking part in research.
You can watch the videos below:
To learn more about PPIE in NIHR MH-TRC Mission, and read examples of activities, visit our website.
