Trauma-informed research and distress
Individuals experience trauma or distress and cope in different ways. Research projects and settings also vary and so the risk of trauma, re-traumatisation, or distress. Guidance cannot cover every scenario and there will always be judgement and discretion required on what is appropriate. However, researchers should always plan ahead, think how risks could be mitigated, and ensure the benefits of the research outweigh any risks.
In professional settings, such as public services, there is a move towards ‘trauma-informed’ practice – recognising and understanding the prevalence of trauma and how it might impact individuals, incorporating this into working practices.
A common concern for reviewers of ethics applications is how distress and trauma (particularly re-traumatisation) will be managed if it occurs during or due to a research encounter. This is mainly around research on sensitive topics or with specific populations, however distress or re-traumatisation can occur outside of these contexts. Applying a ‘trauma-informed’ approach to research may help researchers understand the risks, impact on participants and others, and plan accordingly.
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Many people experience trauma. 'Trauma' can refer to a wide range of events that are experienced as being emotionally or physically harmful or life threatening. Whether an event is traumatic depends not only on individuals' experience of the event, but also how it negatively impacts on their emotional, social, spiritual and physical wellbeing. Everyone is affected by traumatic events in different ways. For more on trauma and how it can impact different aspects of someone’s life, see the NES Scotland video.
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Many people are affected by trauma or experience distress and it can be hard to anticipate the research, context or participants which might cause distress or re-traumatisation. Potential triggers can vary and include seemingly innocuous things like a piece of music or a scent. This means the core ethical principles of informed consent and ensuring respect, safety and wellbeing of participants are critical in any research.
However, there are research types, contexts, or participants where there may be a greater likelihood of risk. For example (not exhaustive):
Research:
- Asking people to recount traumatic or distressing experiences, life-histories or memories
- Physical examinations or procedures
Contexts:
- Front-line psychological, criminal justice, social care or humanitarian settings
- Advocacy and support settings i.e. rape crisis, refugee support, asylum advocacy
- Medical settings, particularly those around life-changing or terminal injuries and illnesses
Participants who are:
- Patients or carers
- Suffering bereavement
- Refugees, asylum seekers or displaced people
- Participants by virtue of having had an adverse experience like sexual or psychological abuse, crime, war, natural disasters
- In custody or long-term medical or psychiatric care
Topics:
- Lived experience of potentially traumatic events or situations
- Lived experience of criminal justice or asylum systems
- Lived experience of persecution, discrimination or abuse
- Sexual activity or interests
- Body image
- Mental health
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If we were to completely avoid research with these groups, we would:
- not learn about their needs and experiences
- not be able to develop sensitive and informed practice or policy
- deny them the same rights of autonomy, expression and voice as others
- potentially disadvantage or underrepresent them.
Research, if done sensitively, can have a positive impact - participants may value the opportunity to share their experiences or stories and contributing to projects that may help others like themselves in the future can be empowering.
Given the risks in this type of research, it is important that there is a favourable risk-benefit balance and the that benefits are relevant to the participating population.
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Participants often do not become distressed, even in trauma-related research, or if they do this can be within the scope of a normal reaction, transitory and not at odds with a positive experience. While researchers must be vigilant for acute distress and re-traumatisation and ensure they plan how this will be managed and participants supported, care should also be taken not to pathologise distress or discount individuals’ resilience.
Re-traumatisation
People affected by trauma can become primed to see danger and react to situations that remind them of the harm they experienced before: in these situations, they can sometimes feel as bad as when the trauma was actually happening (this is called re-traumatisation).
Vicarious trauma
Vicarious trauma is where someone experiences trauma through being exposed to another person’s trauma, such as through their describing of it. This is a risk for researchers (and associated individuals such as transcribers/translators) when working with participants affected by trauma.
Distress
It is natural for human to display emotions and sometimes discussing things that are important or difficult can stir these up. Distress or other displays of emotion are not always negative and can occur in a positive research encounter. However, it may be difficult for researchers to determine the extent of distress, when this might occur (for example, it may be after the research has concluded) or if there is also risk of re-traumatisation.
Trauma-informed practice
This section has been adapted towards a research scenario from the NES ‘Transforming Psychological Trauma: A knowledge and skills framework for the Scottish workforce’
Trauma-informed practice is where workers recognise and understand the prevalence of trauma and how it might impact individuals, incorporating this into their working practices. This relies on five principles:
- choice
- collaboration
- trust
- empowerment
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What you should know:
- when trust, choice, collaboration, empowerment and safety are compromised this can lead to trauma related distress or re-traumatisation, leading people to drop out from or avoid care, support, treatment or research
- physical examination or invasive physical procedures carry a higher risk of being experienced as distressing
- it is important to conduct research that:
- builds trust and helps the person feel safe
- is collaborative and empowers the person to make choices about their participation
- considers the person’s cultural background
- applies routinely the principles of trauma-informed practice.
- hearing about trauma experienced by others can impact your own health and well-being
- it is important that you are supported to practice good self-care and have access to formal and informal support/supervision
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What you can do:
- appreciate that a person might feel distressed or even re-traumatised in certain situations if they remind them in some way of past trauma.
- identify aspects of your research that may be negatively experienced by those affected by trauma
- adapt your research practice and procedures to reduce risk of trauma related distress by maximising:
- a person's feelings of choice (for example over the gender of the person collecting the data, or location of the encounter)
- collaboration (for example, asking at the outset what the person needs to happen through the procedure or meeting)
- trust (for example being clear about what will happen and when)
- empowerment (for example enabling the person to make active decisions with regards their participation)
- safety (for example ensuring the meeting location is sufficiently private, without unnecessary interruptions)
- prioritise good self-care
- make use of support/supervision for yourself.
Ethics applications
This section provides guidance on what to think about and include when planning your study and ethics application.
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Researchers should demonstrate or describe in their ethical application:
- The risks of the research
- The benefits of the research and how these are relevant to the participating population
- How the benefits of the research will outweigh the risks
- If and how participants will be involved in planning the research (i.e. co-designing, participatory methods)
- How they will ensure consent is voluntary and informed, considering
- language or cultural barriers
- dependent relationships or hierarchies
- if the participant would be disadvantaged by their participation or lack thereof
- The context of the research i.e. within a UK organisation, refugee camp
- is there immediate risk of danger to the participant or the researcher.?
- is there infrastructure in place to support both the researcher and the participant?
- will the act of participating in the research put the participant at risk i.e. stigma, abuse, government surveillance?
- Where the research encounter will take place
- will confidentiality be maintained?
- will the physical environment remind the participant of traumatic settings?
- will the researcher be safe?
- Appropriate support
- for themselves i.e. supervisor, peers, local organisations/services, mentors, UK support services?
- for participants i.e. family, local organisations/services, UK support services?
- Distress protocols and/or screening for high-risk individuals
- will the researcher try to determine pre-interview if the participant is at increased risk i.e. recent thoughts of self-harm, extreme distress?
- what will they do if a participant becomes distressed?
- what signs will they watch for?
- will they give the participant opportunity to stop the interview, pause or continue?
- if not, do they describe any training they will complete, mentoring or supervision
- Are their methods or procedures appropriate and sensitive to the participants, context and risks?
- Does the researcher have appropriate skills and experience?
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Participant documents are critical. You can find these on the University’s template documents page. These templates can be adjusted to meet the needs of your participants and research context.
Participant documents normally include:
- Participant Information Sheet – this should ensure participants understand the research and what to expect, including any possible risks, if they opt to participate.
- Consent – any consent methods used (such as a consent form) should ensure participants consent only once they are fully informed and happy to participate (see also the informed consent guidance).
- Debrief - this is useful in many research projects but is particularly important where there is a risk of distress or re-traumatisation. A carefully constructed debrief should ensure that participants have something to keep for themselves which:
- thanks them and acknowledges their contribution to the research
- emphasises that their participation and data are valued
- details support resources, processes or contact points
- lets participants know where they can find out about the results of the study
- fosters a sense of empowerment and closure.
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Do background reading on your topic, population and methodology. You may have done this already but, if not, try to establish the level of risk, any precedents or guidance.
Consider using participatory approaches – designing your research with the population in question can help ensure that it is done sensitively and may identify issues you had not considered.
Consider your own personal wellbeing and risk – do you have support from a supervisor, colleagues or peers? Do you need to complete a fieldwork risk assessment? If you will be ‘in the field’ how will you get support if you need it?
Think about the physical, geographic and cultural setting of your research. Is there anything you need to do to ensure the safety and confidentiality of your participants? For example, in some situations it might be best to meet somewhere public (to prevent perceived impropriety) or in others private might be better (to maintain confidentiality).
Plan for what to do if a participant becomes distressed. Check out other research in similar groups or topics and guidance online about distress protocols. Speak to other researchers, colleagues or supervisors about their experiences or advice.
Make sure you are familiar with local infrastructure and support services – make sure that both you and your participants have access to support. This might be from peers, local organisations or services, or national/general organisations or services.
Selecting support resources for participants – while well-known resources such as Student Services or the Samaritans can be both helpful and accessible, consider whether you can also provide details of organisations particular to your participants or area of research.
Think about your own experience, training and abilities – are you confident that you can do your research in a way that is safe for both you and your participants? Do you understand where your limits are and when it is appropriate to seek help or direct participants to another person or service?
Resources
External resources used in the development of this guidance.
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External resources used in the development of this guidance.
Trauma-related research - guidance for ethics committees
- American Psychological Association Trauma Division. Trauma research and the Institutional Review Board Executive Committee, Division 56, June 15, 2013.
- Medicine Sans Frontiers. ERB Research Ethics Framework Guidance document, v1 November 2013
- McCosker, Heather, Barnard, Alan, and Gerber, Rodney. Undertaking Sensitive Research: Issues and Strategies for Meeting the Safety Needs of All Participants. Forum Qualitative Sozialforschung, 2001: pp. 1-13. Also covers impact on participants and researchers.
Distress protocols
- Draucker et al. Developing Distress Protocols for Research on Sensitive Topics. Archives of Psychiatric Nursing, Vol. 23, No. 5 (October), 2009: pp 343–350.
- Wright N, Hadziosmanovic E, Dang M Lived Experience Research Advisory Board, et al. Mental health recovery for survivors of modern slavery: grounded theory study protocol. BMJ Open 2020;10:e038583. See supplementary documents for example protocols.
- Haigh, C. ‘distress protocols’. Slideshare, 2017.
Research - examples of, and researchers’ reflections on, trauma-informed research
- Abu-Rus, Ana et al. 2019. ‘Informed Consent Content in Research with Survivors of Psychological Trauma’. Ethics & Behavior 29(8): 595–606.
- Campbell, Rebecca, Rachael Goodman-Williams, and McKenzie Javorka. 2019. ‘A Trauma-Informed Approach to Sexual Violence Research Ethics and Open Science’. Journal of Interpersonal Violence 34(23–24): 4765–93.
- Elliott, Denise E. et al. 2005. ‘Trauma-Informed or Trauma-Denied: Principles and Implementation of Trauma-Informed Services for Women’. Journal of Community Psychology 33(4): 461–77.
- Isobel, Sophie. 2021. ‘Trauma‐informed Qualitative Research: Some Methodological and Practical Considerations’. International Journal of Mental Health Nursing 30(S1): 1456–69.
Research – impact on participants
- Brown, V. M., Strauss, J. L., LaBar, K. S., Gold, A. L., McCarthy, G., & Morey, R. A. (2014). Acute effects of trauma-focused research procedures on participant safety and distress. Psychiatry research, 215(1), 154–158.
- Decker, Suzanne & Naugle, Amy & Carter-Visscher, Robin & Bell, Kathryn & Blankenship, Abby. (2011). Ethical Issues in Research on Sensitive Topics: Participants’ Experiences of Distress and Benefit. Journal of empirical research on human research ethics : JERHRE. 6. 55-64. Requires sign-in for access via OpenAthens.
Research – impact on researchers
- McGarrol, S. (2017), The emotional challenges of conducting in-depth research into significant health issues in health geography: reflections on emotional labour, fieldwork and life course. Area, 49: 436-442.
- Moran RJ, Asquith NL. Understanding the vicarious trauma and emotional labour of criminological research. Methodological Innovations. May 2020.
Trauma-informed practice and guidance
These resources are aimed primarily at those in professions where workers are likely to encounter individuals who have experienced trauma, in their professional capacity. However, most resources suggest being generally ‘trauma-informed’ and so some of the principles and actions described may be transferable to a research context.
- NHS Education Scotland video ‘Opening Doors: Trauma Informed Practice for the Workforce’ (9 mins).
- NHS Education for Scotland. Transforming psychological trauma: a knowledge and skills framework for Scottish workers.
- UK Psychological Trauma Society Traumatic Stress Management Guidance for organisations whose staff work in high risk environments.
- International Society for Traumatic Stress Studies Briefing Papers. For example, Briefing Paper: Trauma and Mental Health in Forcibly Displaced Populations.