My name is Carolyn F. Fisher, Ph.D. and I’m a Research and Evaluation Scientist at the Institute for Community Health in Malden, MA. I’m a qualitative specialist and a long-time IRB member.
When I first began thinking about trauma-informed data collection a couple of years ago, I noticed that there are some contradictions between the IRB principles, focusing on paternalistically protecting research participants, and trauma-informed practices, focusing on, among other important things, empowering participants.
When a person experiences trauma, they feel out of control. Any trauma-informed approach to evaluation, therefore, must ensure that participants retain control by choosing to provide, or withhold, genuinely informed consent.
IRBs think about protecting participants by balancing risk and benefit. They (usually) require participants to complete a form documenting “informed consent”. These forms are often long and jargony. There are pressures on data collectors (limited time, patience of participants) to NOT carefully discuss the entire document.
Thinking of informed consent as a legal form to be signed can be a barrier to a conversation between data collectors and participants in which participants can make a well-informed, empowered decision whether to participate. Instead, here are a couple of suggestions.
Rad Resource:
I’ve spent a lot of time chewing on the article “Holding Harm: Narrative methods in mental health research on refugee trauma,” by Lucia De Haene, Hans Grietens, and Karine Verschuren. They argue that harm/benefit in research participation is not a question of either/or – it can be both/and. I might decide to participate in an interview about my traumatic experiences knowing that it might upset me or trigger my traumatic stress reactions AND hoping that my participation might help others. Making this empowered decision can be healing.
So how can we make the process of giving or withholding informed consent into an empowering, trauma-informed conversation throughout the data collection period?
Hot Tips:
Here are some practical techniques my colleagues and I have used.
- The initial consent conversation is NOT to persuade someone to participate — it’s to let them know what the study is about and figure out whether or not they want to participate. If they say no, don’t make it weird! Plan for over-recruitment in budgeting and timelines to reduce pressure.
- Before you start, offer to take anything “off the record” – to discuss how/whether to share anything sensitive. At the end or middle of the interview, remind them of this offer and discuss to share.
- When you anticipate some questions could be upsetting/triggering, warn a participant ahead of time. Ask their permission to ask the question. Offer to skip it.
- Talk about potential participant’s reactions, and what they want you to do. For example, “If you start to cry, do you want me to hug you? Sit with you in silence?”
We have received IRB approval for informed consent to be a conversation (that covers the legally mandated points, PLUS extra things), not just the signing of a form.
This week, AEA365 is hosting Trauma-informed Eval Week during which blog authors share lessons from and principles of trauma-informed evaluation. Do you have questions, concerns, kudos, or content to extend this aea365 contribution? Please add them in the comments section for this post on the aea365 webpage so that we may enrich our community of practice. Would you like to submit an aea365 Tip? Please send a note of interest to aea365@eval.org. aea365 is sponsored by the American Evaluation Association and provides a Tip-a-Day by and for evaluators.