Improving Care through Trauma-Informed Practices in Hemophilia Clinics with Amy Wilson

Today on Beyond the Bleeds, Heather and I welcome Amy Wilson, clinical social worker at the Center for Bleeding and Clotting Disorders at M Health Fairview in Minneapolis, Minnesota. We discuss the prevalence and impact of PTSD in the bleeding disorder community, the unique forms of trauma patients experience, and actionable strategies for providing trauma-informed care. Amy shares insights from her groundbreaking multicenter study, explains how trauma manifests for those with chronic conditions, and emphasizes the essential role of comprehensive support systems.

Amy Wilson brings over 20 years of experience as a medical social worker, specializing in critical care, hospice, rare diseases, and, for the past decade, bleeding disorders. She is a published researcher, co-leading a 2023 study on post-traumatic stress disorder and post-traumatic stress symptoms among adults with hemophilia A and B, conducted alongside teams from Mount Sinai Hospital and the Boston Hemophilia Treatment Center. Amy is passionate about integrating mental health advocacy with clinical care, ensuring patients’ emotional and psychological needs are recognized and met.

“Trauma isn’t just about what happened, it’s about how you as an individual, your body and mind, react to what happened.” ~Amy Wilson

This week on Beyond the Bleeds

• PTSD and trauma are prevalent in the bleeding disorder community, with 11-14% screening positive, and more than half reported experiencing trauma connected to their condition.
• Trauma can stem from non-infectious medical events (frequent bleeds, joint damage), chronic pain, psychosocial experiences (bullying and isolation), and infectious complications from prior treatments (HIV, hepatitis).
• Hospital stays, medical procedures, and negative encounters with providers are significant contributors to PTSD in this population.
• Trauma doesn’t only present as emotional distress; it can manifest as appointment avoidance, skipping treatments, or even panic when approaching healthcare settings.
• Signs of PTSD in bleeding disorder patients include intrusion (flashbacks, nightmares), avoidance, negative thoughts and feelings, and hyperarousal (feeling on edge).
• Younger adults and those with less education face a higher risk for PTSD, especially if they have other medical or mental health conditions.
• Trauma-informed care, which includes clear communication, informed consent, and a calm provider presence, can significantly enhance patients’ experiences.
• Social workers play a vital role in assessing emotional needs, providing counseling, crisis intervention, education, and connecting patients to additional support.

Guest Contact Information:

Amy WilsonM Health Fairview Center for Bleeding and Clotting DisordersMinneapolis, MN

LinkedInResources Mentioned:

• Published study:“Posttraumatic stress disorder and posttraumatic stress symptoms in adults with hemophilia A and B Read the full article here
• Recommended reading:The Body Keeps Score by Dr. Bessel van der KolkWhat Happened to You? by Dr. Bruce Perry
• PTSD Checklist for DSM-5 (screening tool)Information on trauma-informed care training.

Looking for practical tips, expert advice, and a sense of community while living with or supporting someone with a bleeding disorder?

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