Five Tools for Ethical Trauma-Focused Research
Traumatic StressPoints, August 2007
Kathryn Becker-Blease, PhD
Washington State University at Vancouver
Introduction: The following article is based on a presentation authored by Kathryn Becker-Blease, Jennifer Freyd, and Anne DePrince at the 2006 Conference on Innovations in Trauma Research Methods (CITRM). CITRM, a NIMH-funded conference, held annually and contiguous to the annual meeting of ISTSS, features seminars, poster presentations, and informal discussion opportunities focused on research design, sampling theory and techniques, statistics, and measurement, as well as research ethics and research career development.
Kathryn Becker-Blease also presented a symposium at the 2012 ISTSS Annual Meeting, Empirical Evaluation of Costs and Benefits in Trauma Research with Anne DePrince, PhD, Ann Chu, MA, Lisa DeMarni Cromer, PhD, Jennifer Freyd, PhD and Angela Binder, BA.
Can traumatized participants provide informed consent? Is trauma-focused research distressing? Must researchers report abuse? At the 2006 Conference on Innovations in Trauma Research Methods, my colleagues and I presented a workshop on the headway researchers have made in addressing some longstanding concerns about the ethics of trauma-focused research. Here are five tools from that talk that researchers can put to use right away:
- Consent quizzes
- Debriefing newsletters
- Participant reaction assessment
- Mandated reporting protocols
- Research Assistant (RA) training and support
1. Consent quizzes
Most consent forms contain language about participants’ ability to end their participation or decline to answer particular questions. It is crucial that participants understand this language both to avoid harm and to collect accurate data.
One way to help insure (and assess) participants’ understanding of consent materials is to administer a verbal “quiz”. Quiz questions can be designed to assess participants’ understanding of the central consent information, such as: “Do you have to answer every question?” and “If you become upset at any time during the experiment today, what can you do?” The “quiz” can be presented to participants as a check on the researchers’ performance. For example, “I’m going to ask you a few questions to make sure I covered everything.”
For some of our colleagues, the consent quiz is used to set criteria for evaluating “informed consent”. For example, when participants answer a quiz question incorrectly, corrective information is provided and the question is re-administered. If participants still cannot provide correct answers on the second try, this suggests problems understanding the consent information and therefore calls into question the participants’ ability to give informed consent. Thus, the researcher can set specific criteria about when “informed consent” is met and end sessions where these criteria are not met.
2. Debriefing newsletters
It is often challenging to provide participants with debriefing information about sensitive topics. Participants may not wish to discuss sensitive topics with the researcher or in front of family members. In the case of family violence, written information can put participants at risk. A solution is to embed resources and information about sensitive topics in a less threatening newsletter handed to all participants. This newsletter can thank participants, explain the goals of the study, and give contact information for the researcher. In addition, you may add short articles on relevant topics, such as parenting abused children, lists of recommended books available in the public library, and contact information for community mental health providers. A key to this approach is to provide choices respectfully so that participants can make their own choices about responding to challenges in their lives.
3. Participant reaction assessment
Systematic evaluation of both costs and benefits in research is crucial for accurate cost-benefit analyses. Such systematic evaluation will go a long way in educating IRBs about the true costs and benefits of trauma research as well as informing researchers about the impact of their procedures on participants.
Drs. Elana Newman, Danny Kaloupek and Nancy Kassam-Adams have pioneered empirical evaluation of participant reactions to trauma-focused research through the development of self-report measures that can be administered easily during debriefing. For example, the Reactions to Research Participation Questionnaire-Revised (Newman, Willard, Sinclair, and Kaloupek, 2001) asks participants to indicate how much they agree with statements like, “I gained something positive from participating.“ and “I found the questions too personal.” The child and parent versions ask similar questions (Kassam-Adams & Newman. (2002). You may also want to explicitly collect data on how distressing the research participation is compared to daily life, a key indicator of whether the study is consider “minimal” or “more than minimal” risk (DePrince and Freyd, 2004).
4. Mandated reporting protocols
Mandated reporting laws differ from state to state. It is best to locate the actual statutory language in your state to see if you are a mandated reporter. In some cases, researchers who are not mandated reporters may choose not to report suspected child abuse. Circumstances under which researchers plan to use alternative responses, such as follow-up contact, referral for counseling or other services, information on self-referral, or making a referral with the participant should be defined in writing prior to the beginning of the study, and approved by an IRB.
Regardless of the protocol for dealing with suspected abuse, all participants in studies where it is likely that information about abuse may come to light should be told how researchers will respond to suspected abuse. In fact, I would argue that most studies in which researchers interact with children should include information on child abuse reporting.
5. RA training and support: Importance for both RAs and participants
RAs may be apprehensive about interacting with people who have experienced trauma. Allay their fears by providing a training manual that includes written protocols for situations that can be foreseen, such as a safety plan when working with family violence and a mandated reporting protocol when working with children. Researchers, IRB members, and RAs usually feel more comfortable when an experienced clinician or researcher is on call should an unforeseen situation arise.
Learning self-care is an important skill for RAs working on trauma-focused research. Make alternative duties available that allow RAs to contribute to the project even if they step back from working directly with participants. Be aware that some jobs like transcribing interviews, coding videos, and entering survey data can make the amount of harm in the world seem overwhelming. Literature searches and preparing materials are good duties to give RAs who prefer less stressful work.
Many research labs have a weekly check-in about ongoing work. For trauma-focused work, communicate that feelings and concerns are important information to share. Depending on the setting, consider asking RAs to record their own subjective observations about the session using rating scales and/or open-ended questions. These observations may be used as data or kept private.
References
Becker-Blease, K. A. & Freyd, J. J. (2006). Participants telling the truth about their lives: The ethics of asking and not asking about abuse. American Psychologist, 6, 3, 218-226.
DePrince, A.P. & Freyd, J.J. (2004) Costs and benefits of being asked about trauma history. Journal of Trauma Practice, 4(3), 23-35.
Newman, E., Williard, T., Sinclair, R., and Kauoupek, D. (2001). Empirically supported ethical research practice: The costs and benefits of research from the participants’ view. Accountability in Research, 8, 309- 329.
Kassam-Adams, N. & Newman, E. (2002). The reactions to research participation questionnaires for children and for parents (RRPQ-C and RRPQ-P). General Hospital Psychiatry, 24, 336-342.