I’m following up my last webinar/blog on strengths-based interviewing with a focus on informed consent. The YouTube video of the talk is on my channel in case you would rather listen than read. Although it doesn’t sound like an exciting topic it is one of the most important components of trauma informed interviewing and is foundational in establishing safety in a practitioner/patient relationship. 

Many of us probably think of informed consent as that paper you sign before undergoing a medical procedure or when you are allowing access to your data. Most of us don’t think much about it, but probably we ought to more than we do. However, informed consent to a survivor is not only foundational, it can also be empowering.

The basic needs of a trauma-survivor are SAFETY ACCEPTANCE & CONTROL. When you think about it, these are everyone’s basic needs, although it doesn’t register on a conscious level for most of us. A lot what we do through a trauma-informed lens addresses these things in the person in front of us and the whole process of informed consent, when done properly, adequately meets these needs on several levels. There are several aspects to informed consent but the simple act of asking permission addresses:
1) safety by acknowledging that some of the questions may be difficult to answer, giving the interviewee time to prepare and time to answer.
2) acceptance by including them in the process it affords them dignity. We are accepting their active participation in the interview.
3) control by allowing the interviewee to ask their own questions, request a break, or refuse to answer a question without shame or penalty.

How often, or when was the last time they have been asked permission for something to be done to them?

Even before we get to the “nitty-gritty” of the information or stories, we are already establishing dignity and respect, which leads to empowerment and healing. Consent seems like a no-brainer. Of course, we ask permission – we ask them to agree to participate in our programs or research project, to use their stories (even if anonymized) and take the photos (even if we can’t see their faces). But the key word is INFORMED. Does the person know to what exactly they are agreeing? Do they understand the implications of refusal? Is the person terminating the interview because they are triggered, angry, do they need a break, or do they not understand and are too embarrassed to bring it up?

Consider HIV pre-test counseling. When I was doing clinical work in Thailand, we offered voluntary HIV testing with a process of informed consent with pre-test counseling. Nearly everyone agreed, but there were a few who didn’t. With those that refused (and even on some who did consent), I followed up on why. Sometimes they would say, “I’m afraid of needles”. So, then I was able to show them the tiny needle with which I pricked their finger. Perhaps in their mind, they thought I was going to use a foot-long needle and extract a half liter of blood. Others had different misconceptions about the test or the results. Most simply had a completely different idea about what the test entailed and how we would deal with the results. I’m not entirely blaming the pre-test counselors because I think that some of these cases would happen anyway, but I do discuss these potential pitfalls when training them. It is important to be very concrete when explaining and checking back in to make sure they truly understand.

Paying attention to informed consent – ensuring that consent or rejection is truly informed – is a way to avoid traumatization of the individual. Sometimes during a long interview, it may be helpful to check in with the person to make sure they are still OK with the questions. Misunderstanding and misinformation are correctable problems and we might have to take some extra time to make sure that people get the care that they need.

As social workers, case managers, nurses, or doctors, or other, we can sometimes forget the power dynamics at play. We breeze through consent; we assume that what is routine language and a routine process may not be so routine for someone who has been used and abused for a long time. This makes it even more important. It is sometimes easy for the beneficiary to simply agree to whatever is being proposed because the people doing the asking have some kind of “perceived power” over the survivor – they are providing some kind of benefit and the survivor may not feel like he/she can refuse. On another note, there have been times in my experience when the beneficiary was a bit confused by all the questions and assurances in the process of informed consent because it’s not something anyone cared about before. I have also seen instances where informed consent was not honored by the organization and the information was abused.

A Story about How NOT to do informed consent
In Thailand there was a time when I was helping a very ill hospitalized African trafficked woman, and a nurse came in with an informed consent form for surgery and asked me to get the patient to sign it. The nurse told me I could do it because I am a doctor who speaks English. But I didn’t know what surgery they were going to do or why. I refused and told her that the doctor should return and explain the procedure to the patient. The junior doctor returned, quite frustrated that I wouldn’t do it. I lectured him on medical ethics and told him that he was lousy and unethical and forced him to go through the consent. I offered to translate, even though technically they needed to get an independent translator instead of using the convenient bedside caregiver. However, I knew that would be near impossible in that place, so I didn’t press the issue. He was angry, and rushed through the process, skipping many important points, on which I pressed him. I was making him do his job and take time with a person that he considered not worth his time. I’m sorry this happened, but I’m glad that I was the caregiver on duty at the time.

Components of Informed Consent

  • Introduce yourself and who you work for. (when applicable) Introduce the interpreter and anyone else in the room
  • Explain the purpose of the interview and what will generally be covered
  • Emphasize that the interview is completely voluntary
  • Eliminate potential for coercion or any pressure that the beneficiary must participate. Such as being afraid that benefits will be denied.
  • State that refusal to answer any question or terminate the interview at any time is accepted and that there is no penalty.
  • Give a warning that some questions may be upsetting
  • Ensure confidentiality: explain what you will do with the information and who has access to it
  • Ask if the interviewee has any questions
  • Clarify understanding by having the interviewee repeat back some key points
  • Establish competency. This is usually not an issue, but we do not want to interview someone who is under the influence of a substance or has dissociated and is inhabiting one of their alters.
  • When serving children, it is important to follow your governmental guideline regarding who is considered a minor and in what circumstances can a minor independently consent or participate. When does a parent or guardian need to be involved?

Examples of Statements
“Thank you for helping us help you. As much information as you can provide to the best of your knowledge, this is helpful.”
“What are you expecting out of this meeting/interview?”
“You can also ask me any question at any time.”
You can also follow up directly with, “Do you have any questions?”
“There are no right or wrong answers.”
“You have the right to refuse to answer any question you don’t want to answer. We’ll just move on to the next one.”
“Naturally, you may change your mind and answer a previous question”
“I’m going to be taking notes, but these are going into your confidential file…”

Informed consent also has a role beyond the initial interview. Although we are not always revisiting a formal informed consent in every encounter, it can helpful to check in with the beneficiary at different times in various meetings to make sure that he/she agrees and understands the plan of the day. This a way to encourage participation not only in the interview but sets the stage for participation in the care-giving journey. As I’ve said, every encounter with someone is an opportunity towards healing. Getting started in the right space helps to lay a foundation of trust that will continue to be built throughout the clinician/patient/beneficiary relationship.

Specific to health professionals, it is important to not retraumatize a patient during the history and physical exam. We can do this by taking extra care and extra time to walk the patient through what you are going to do during an exam, explaining why and where, being as concrete as you can about your plan. For example, “Now I’m going to put my stethoscope on your chest – would you please lift your shirt for me?” “Now I’m going to listen to your back.” “I’m sorry if the stethoscope is too cold.” This is especially important when examining parts of the body that the patient can’t see, such as during a pelvic exam.

Cultural and Language considerations
Informed consent should be obtained in the individual’s preferred language (which may or may not be their mother tongue) AND make sure the language used is easy to understand. You are not translating for a government official. Be prepared to have translated documents and a trained interpreter when necessary. How will you handle a situation if the interviewee is illiterate? Ensure that you have a good interpreter – ideally someone who has also had trauma training. Side note: I plan on discussing more about working with interpreters in general in a future webinar.

Regarding cultural and language considerations, it would be impossible to go through all the specific pearls or pitfalls to consider for every culture or background. When you know your target group or likely demographic population is (for example Bulgarian or Romanian women in prostitution in Berlin) you can do language and culture prep ahead of time. You simply need to do your own homework. This also goes for working with youth or people with LGBTQ background. Another thing to consider is that people who have been sexually exploited or worked in street prostitution or brothels probably come from a different background than you do (unless you are a survivor).

Remember that body language makes up at least 70% of communication! There can be very specific cultural necessary things to do (such as a proper greeting) as well as taboos to avoid (like what not to do with your feet in Thailand), but sometimes body language is universal and common sense, like smiling! You can take cues from the interviewee. While doing some clinical work with African women trafficked to Thailand, I often ended up sitting on the floor. There was a desk with chairs, but the women would come in and sit on the mat, so I got on the mat with them

In the last Q&A session, one of the participants asked about why an African doctor in Africa caring for sexually exploited women in a clinic didn’t seem to be sensitive or culturally attuned to the women. Why? There are layers of culture and expectations. The doctors were behaving like they thought is proper for a doctor and had ideas about how patients need to accept that. Caucasian docs in America who insensitively treat sexually exploited American women are guilty of the same – same problem, different country. Location or similar culture doesn’t assume cultural competence when dealing with a different demographic. I’ve seen evidence of this since my medical training days.

A lot of cultural bridges can be crossed with humility, compassion, common sense, and most of all love. Taking time, asking questions when you don’t understand or want to learn.

There are many more aspects of interviewing and assessments that I’d like to discuss but it is impossible to cover all of this in the brief time allotted. I hope that you’ll go back and see my previous session about strengths-based assessment and return here for more discussions in the future. To learn about how to join one of my live Q & A sessions please sign up for my newsletter or stay in touch by social media.