By Kayla Zawislak, LSW, CADC, Director of Patient Engagement, Addiction Policy Forum
There is a common saying in the field of addiction science: “Nothing about us, without us.” An important reminder during Recovery Month and every month working in the addiction field. Yet there is still a pronounced absence of systematic feedback from patients in recovery and receiving treatment for substance use disorders (SUDs). Barriers to engaging individuals in recovery can include social stigma, confidentiality concerns, and fear of exposure or retribution. And yet patients have a wealth of information and guidance on treatment for SUDs and long-term recovery that can benefit the research community, clinicians, and providers, as well as other patients and families.
To help tell this story, our team at Addiction Policy Forum developed a Patient Journey Map for the substance use disorder treatment and recovery experience. Patient journey mapping is a process common in the healthcare field that helps visualize the process patients go through to receive care for a specific illness. It is meant to help identify and understand the details of all patient touch points within a specific treatment experience.
Our patient journey map underscores the obstacles and positive points patients encounter across seven distinct phases. The qualitative study included 60 individuals in recovery across 22 states and Canada.
We at the Addiction Policy Forum knew that each patient's journey to treatment and recovery is unique, and sharing diverse experiences across different types of substance use disorders, genders, races, ethnicities and ages was critical. We conducted one-on-one life course history interviews to empower patients with lived experience to tell their unique stories in a semi-structured interview process with time to reflect and describe their journeys.
To create a meaningful visualization, we created a layered map that spanned seven distinct phases from onset and progression, trigger events, getting help, care begins, treatment and recovery, lifestyle changes, and ongoing support. The map highlights bright spots that were helpful to the patients within each of these phases, as well as pain points or challenges those individuals faced. Our map also focused on reinforcing the finding through patient quotes – telling the story through their own words. These important testimonials were included in the map to center the data on the lived experience of persons in recovery. Each quote gives a face and experience to every data point that is shared, which gives the viewer a deeper understanding of the patient journey.
Key takeaways from the SUD patient journey map include:
Barriers include high levels of stigma; the complexity of navigating the substance use disorders care system; long wait times; the high costs of treatment; red tape payer policies such as fail first and prior authorization; and transportation difficulties.
One patient shared: “I think stigma is a really big one, though, just within myself, not with seeking help outside, but in having to confront that I have this thing that is frowned on in society.”
Bright spots, or positive moments early in treatment, included children and family, relief, hope for change, and encouragement from others. This is important because addiction is an isolating disease that can easily cloud one’s future. Therefore, it is imperative that individuals have connections with meaningful people within their lives, begin to see that their life can be different, and know that they are not alone.
On average, patients utilized four different services for treatment and recovery support, not a single treatment or intervention. Patient feedback shows the need for layered interventions across three critical domains: 1) physical health, 2) psychological, and 3) social interventions. Lifestyle changes are also cited by patients to be as critical to success as treatment and recovery services, such as changing friends, avoidance of high-risk people, places, and things, becoming honest and accountable, new hobbies, and developing self-care habits around exercise, nutrition, and sleep.
We believe this feedback from a diversity of patients is the key to advancing care and innovation for addiction. Our team even analyzed word usage in the patient journey interviews. The themes and most common words describing active addiction included homelessness, job loss, trauma, children and custody issues and health challenges. In contrast, common themes related to recovery include improved relationships, experiencing life, freedom, health and wellness and words like good, love and amazing.
One patient shared: “This feeling of worth and a feeling of accomplishment for what I've done... It makes you feel good about yourself.”
It is our hope that the patient journey map can help inform clinicians, families, individuals in recovery, and so many others about the key components of treatment and recovery and understand the barriers and pain points we face as a community. Above all, we hope this project celebrates the freedom and beauty of recovery from substance use disorders.
Author Bio: Kayla Zawislak, LSW, CADC has worked at APF for the last four years where she is the Director of Patient Engagement. She works closely with those with a substance use disorder and their loved ones through APF's helpline, smartphone application, virtual recovery meetings, and research projects. Connect with her on LinkedIn or via email at [email protected]