Trauma-Informed Engagement Part 5: Empowerment

By Carolyn Shimmin

Previous posts on trauma-informed engagement have addressed what trauma is, its effects, and how to go about establishing safety and trustworthiness in health research partnerships. We continue the series with a post on how trauma-informed approaches to public and patient engagement mean creating opportunities for choice, collaboration and connection.

Trauma-informed public and patient engagement means understanding and addressing the role trauma plays in lived experience, and working to prevent retraumatization for members of research partnerships.

Experiences of trauma can leave people feeling powerless, having had little choice or control over what happened (e.g. domestic violence, natural disasters) and possibly, what they have done (e.g. war, political violence, car accidents). It is essential that trauma-informed engagement strategies make every effort to empower patient and public partners.

Offering choice, whenever possible, gives control and responsibility back to patient and public partners. Choice can relate to all aspects of the research work, for example:

• How patient and public partners prefer to be contacted;
• Who will be involved in certain research decisions;
• How the research budget should be allocated; and
• The priorities and goals of the research project.

Collaboration and meaningful engagement involves sharing expertise, and sharing power. Patient and public partners must actively participate and plan their own course of action (including how they would prefer to be involved, and at what level), guided by researchers’ experience and access to resources.

Ensuring public and patient partners have a sense of personal control in interactions with health researchers (who often hold the bulk of power in research relationships) is crucial to engagement, and in establishing and maintaining safety.

Strategies for Researchers to Support Choice & Collaboration

1. Brainstorming How to Address Barriers to Engagement and Attendance

This includes considerations about childcare, respite, transportation, lack of support at home, language needs, and other potential barriers to involvement in research. Researchers can ask public and patient partners:

• “What, if any, obstacles do you foresee in getting to the engagement activities or connecting back with your community?”;
• “You’ve mentioned other similar engagement events you have attended in the past. What needs to happen this time to make it worth your while?”;
• “How can we support you to feel safe in this engagement?”; and,
• Items that may seem more administrative in nature, but are equally important, such as “How would you prefer to be contacted?” (e.g. by phone, email, online forum, mail), or “Based on your work and life commitments, when are the most convenient meeting times for you?”

2. Eliciting Public and Patient Partners’ Priorities and Hopes for the Research Project

It’s important for researchers to understand what is most pressing for public and patient partners, including what their hopes, expectations and concerns are about the research process. For example, researchers may want to ask “What do you need to get out of this engagement to make it worth your time?”. Researchers also need to clarify whether patient partners understand why they are being engaged in the project, and how they were chosen to be engaged (i.e. recruitment process, valued perspective).

3. Inquiring About Others Who May be Helpful to Include in Some Aspects of Engagement

This might include a support person, one or more Elders, a family member, friend, caregiver, or someone else important to the patient or public partner. It’s important that public and patient partners clearly outline how they would like the other person to be involved, and that confidentiality be discussed with this individual as well. Before the engagement activity, it is important to once again speak with public and patient partners to confirm their decision to include others. Researchers should communicate directly with public and patient partners, especially when speaking through an interpreter or with someone who may be living with cognitive challenges.

4. Using Statements That Make Collaboration and Choice Explicit

These include phrases such as:

• “I’d like to understand your perspective.”
• “Let’s look at this together.”
• “Let’s figure out the plan that will work best for you.”
• “What is most important for you that we should start with?”
• “It’s important to have your feedback every step of the way.”
• “This may or may not work for you. You know yourself best.”
• “Please let me know at any time if you would like a break or if something feels uncomfortable for you. You can choose to pass on any question/activity/task.”

5. Purposefully Eliciting Public and Patient Partners’ Perspectives on Engagement Activities

Getting feedback on engagement activities should be done at the start of a research project to identify which participatory approaches would be best for all participants and the research team (e.g. if you are engaging youth around what outcome measures they would like to see in a study, it might be more appropriate to use a PhotoVoice or Digital Storytelling approach to engagement, instead of a traditional advisory group).

Gathering perspectives should also be done throughout the research process, using questions like: “How was this experience for you today?” and “Are there other things that you wish we would have addressed?”.

Behaviours That May Impact the Intended Level of Choice & Collaboration

There are a number of behaviours and beliefs which, as health researchers or community engagement professionals, we may unintentionally exhibit that can shut down partnership and co-building. These include:

1. Trying to Fix Things

For example, wanting to avoid uncomfortable conversations that must be had in order to move forward and address any power imbalances on the team, or wanting to be helpful to the point of inadvertently disempowering people and taking over the entire research process. Remember to always start from a strengths-based position. This means arming public and patient partners with the necessary resources, education and information, and providing support and facilitation of shared decision-making by choosing engagement activities and participatory approaches that allow for all voices to be equally heard.

2. Holding Steadfast to the Expert Role (to the Detriment of Collaboration)

This can happen when a research team is under pressure because of looming deadlines, or wrongly perceiving that public and patient partners need ALL of the information ALL at once in order to move forward quickly. Remember, if you are practicing reflexive listening with public and patient partners, you should be able to identify the pace at which everyone feels most comfortable.

3. Being Rigid About the Choice of Engagement Approach

It is important to ask public and patient partners how they would prefer to be engaged, and to be flexible around which engagement activities or participatory approaches will be used. Some people may prefer one-on-one conversations, while others may prefer to take part in a larger advisory group. The important thing is to meet people where they are at, instead of trying to force people to engage in ways that don’t make them feel comfortable (and consequently, minimize their potential contribution).

4. Being Critical or Blaming

Public and patient partners bring a whole wealth of experiential knowledge to the table, and a different lens to the evidence you present. This may mean shared decision-making goes in a different direction than originally planned (e.g. “I thought once I laid out all the information, we would agree that outcome measure X is most important”). Being flexible and adaptable, and understanding that things may not be perceived in the way you anticipate, will go a long way in collaboration with public and patient partners.

5. Losing Awareness of Body Language and Facial Expressions

This can lead to expressions of excessive sympathy or shock when someone is sharing their experiential knowledge, and have an unintended negative effect on the conversation. Check out our blogs on why bodies matter in patient and public engagement and incorporating embodied reflexivity for more on body language.

In being cognizant of the above, health researchers, community engagement specialists, and public and patient partners can work together to ensure that there is meaningful shared decision-making and opportunities for choice throughout the research process.

Previous Posts:

• Part 1: Understanding Trauma
• Part 2: The Effects of Trauma
• Part 3: Safety and Trustworthiness
• Part 4: Bearing Witness

Need Help?

• Please refer to the Canadian Association for Suicide Prevention’s list of crisis centres across Canada.
• First Nations and Inuit Hope for Wellness Help Line: 1–855–242–3310. It is toll-free and open 24 hours a day, 7 days a week.

About the Author

Carolyn Shimmin (@CarolynShimmin) is the Patient and Public Engagement Lead at the George & Fay Yee Centre for Healthcare Innovation (CHI). Her experience includes stakeholder engagement, research, writing and reporting on various health policy issues including mental health, addictions, trauma and the sexual exploitation of children and youth. Areas of interest include patient engagement, lived experience research, knowledge translation, trauma-informed approaches, intersectional analysis, and post-structuralist queer theory.