Trauma-Informed Engagement, Part 4: Bearing Witness

The Complexities of Bearing Witness in Public and Patient Engagement in Health Research

By Carolyn Shimmin

Previous posts on trauma-informed engagement have addressed what trauma is, its effects, and safety and trustworthiness in research partnerships. In this post, we discuss one often overlooked aspect of patient and public engagement — bearing witness to experiences and stories. We’ll also discuss the impact this has both on researchers and public and patient partners, and thoughtful ways for research teams to navigate this process together.

“Let’s face it. We’re undone by each other. And if we’re not, we’re missing something.” — Judith Butler

Anyone who knows me knows I love the above quote by Judith Butler ― I have it posted on my office wall as a reminder that as human beings we are all complex and, at the heart of it, quite messy at times. As Butler points out, we do not always stay intact. Despite our best efforts, we may, at some point of time, come undone. A tremendous loss may occur — a loss of a loved one, loss of a home, loss of employment, a loss of sense of self. The experience of illness may shake the very core of our own understanding and relationship with our bodies, minds and spirit.

As we’ve mentioned in previous posts, physical, emotional, verbal and sexual violence (including racism, colonialism, transphobia, homophobia, sexism, etc.) can create lasting effects that may remain imprinted on our bodies, our psyches, or our souls. Trauma can create (for the individual) a deep sense of loss — a loss of control over one’s body, one’s thoughts, one’s words. Trauma can bring about a sense of powerlessness, a loss of agency, a loss of self. One becomes undone.

People may respond to this undoing in myriad of ways in order to cope. In public and patient engagement in health research, there is an aspiration to open up spaces for people to have their stories heard — to have their pain acknowledged, and to have their experiential knowledge illuminate new ways of doing research.

The Act of Bearing Witness

What is Bearing Witness?

The foundation of public and patient involvement in health research is built upon partners’ ability to share their experiential knowledge with the research team. However, we rarely discuss the act of bearing witness in relation to engagement. The term “bearing witness” is used mostly in psychology as well as in some critical theory. It denotes the sharing of experiences with others, most notably the communication of traumatic experiences.

Creating a safe space for engagement means that public and patient partners may want to share their experiences not only to help inform research decision-making, but for other reasons that may include:

• Using it as a valuable way to process their experience;
• Obtaining empathy and support from the team;
• Lightening their emotional load via sharing it with a witness; and
• Asserting their own agency (i.e. a type of catharsis).

To act as a witness to a patient/public partner’s story is largely nonverbal. It is about being a compassionate observer, giving our attention to others without judgement, and providing a space for partners to speak their truth.

We Are All Witnesses

Though health researchers may feel ill-prepared at times to perform such an act, it is good to remind ourselves that many of us bear witness on a daily basis through our interactions with others, whether by way of conversation, writing, or art. We are all witnesses for one another, whether we choose to be or not. But in public and patient engagement in health research, the act of bearing witness is almost formalized by the roles and expectations placed upon both health researchers and public and patient partners.

Health researchers can play a supportive role by powerfully upholding patient partners’ right to take up space and have their story heard. It is not about fixing a patient or public partners’ pain, or sharing that we’ve had similar experiences. It’s about showing up, being present, and letting public and patient partners know that they are not alone, and that they are seen and heard. It’s about health researchers letting public and patient partners know that their experiences matter to them, and matter to the research.

Active Listening & Affirmations

Bearing witness requires active and reflective listening skills on the part of the health researcher, so that public and patient partners feel heard and valued. This means that researchers listen for the meaning of what they believe they have heard the patient partner say, and offer back a statement of understanding. For example, “Let me make sure I understand what you have told me so far…” and “What did I miss, if anything?” The important thing to remember is there is no wrong answer, and you will have immediate feedback in terms of what a patient partner says next.

From http://www.speaktosucceed.in/importance-active-listening-communication/

It is also important from a trauma-informed engagement perspective to include genuine, specific and relevant affirmations in order to help build self-efficacy and offer a compassionate mirror for self-reflection. Affirmations have a number of positive effects, including:

• Acknowledging effort and strength;
• Offering appreciation and understanding; and
• Recognizing success.

Examples might include:

• “You have been through so much in your life and through your engagement are doing everything you can to make sure that things are different for the next generation,”
• “No matter what, you don’t give up,” and
• “Your children are your first priority.”

The Impact of Bearing Witness

For researchers, being called to bear witness to the sharing of traumatic experiences can be triggering and emotionally draining at times. This is why it is so important that all research team members (i.e. all stakeholders involved) have self-care strategies in place before even beginning to engage.

As a patient engagement professional, I acutely remember having gone through a traumatic life-altering loss within the healthcare system and upon my return to work having to run a public and patient advisory group meeting. I so desperately wanted my pain and grief to be seen, to speak my truth, but I knew that I was being called to bear witness to our partners’ stories at the time. This example demonstrates the complexities entailed in bearing witness in public and patient engagement in health research ― though public and patient partners hold specific experiential knowledge around a health issue being researched; trauma, grief and loss do not preside solely with public and patient partners’ lives.

Trust requires a certain level of vulnerability (i.e. for researchers, having their academic expertise challenged; and for patient partners, being open to sharing their vast experiential knowledge in order to help improve the research project). If trust is the cornerstone of relationship-building between health researchers and public and patient partners, perhaps the universality of heartbreak and sorrow can be a point of connection between the two.

Grounding Strategies

I once had a supervisor who would remind me almost daily to “be gentle with yourself.” We all inevitably make mistakes, and it is part of the process of learning and growing. Just as health researchers need to support public and patient partners with whom they are working to stay present, grounded, and to take care of themselves, researchers too need to practice this approach.

Many grounding strategies, whether focusing on your breath or repeating an inspirational mantra, can help researchers to stay in the present, focus, and connect to what is happening around them. These strategies can be used throughout the course of the day, when preparing for an engagement activity, or getting ready to finish the day and shift from a professional role to a personal one. Whether the strategy is scanning the room and naming what you see, or imagining someone who gives you strength, grounding techniques are useful for both health researchers and public and patient partners.

Self-Care

Other suggestions for self-care might include:

• Having variety in your day and role (e.g. a mix of research, training, different types of conversations, working alone and in a group);
• Attending continuing education sessions that might include mindfulness-based stress reduction techniques;
• Taking scheduled breaks throughout the day for reflection, socializing, exercise, eating, or just to get away from work tasks;
• Developing a personal debriefing plan, with peers or a supervisor; and
• Setting realistic goals for yourself.

One of the greatest honours we can be asked to perform in life is to bear witness to another person’s story — to show up for someone and make them feel heard and valued. Despite our best efforts, we may, at some point of time, come undone. In those moments, we can only hope for people to bear witness to our stories with similar compassionate understanding.

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

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.

Resources

• British Columbia Centre of Excellence in Women’s Health: Trauma-Informed Practice Guide
• Centres for Addiction and Mental Health: Becoming Trauma-Informed
• Klinic Community Health Centre: The Trauma Toolkit
• Christopher Germer: The Mindful Path to Self-Compassion
• Kristin Neff & Christopher Germer: The Mindful Self-Compassion Workbook

About the Author

Carolyn Shimmin (@CarolynShimmin) is the Public and Patient 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.