This week Live & Learn launched a research study on the experience of people labeled with mental disorders who have tried to stop taking psychiatric medications. This project — the Psychiatric Medication Discontinuation/Reduction (PMDR) Study — aims to understand the process of coming off psychiatric medications in order to better support those who choose to do so. The study seeks to answer the question: What helps people stop their psychiatric medications? What gets in the way of stopping?
All of the people working on this project have personal experience with psychiatric treatment and coming off psychiatric medications. In addition to myself (Laysha Ostrow, PhD), the team includes Vanessa Krasinski, MSN, RN, and Lauren Donahue, MSN, RN. The PMDR study received pilot funding from the Foundation for Excellence in Mental Health Care, and administrative support and technical support from Lauren Jessell of NYU’s Silver School of Social Work, and Bevin Croft and Human Services Research Institute. Dina Tyler and Will Hall act in an advisory role.
The PMDR study is not about whether people should take psychiatric medications or not. Sometimes people who take psychiatric medications choose to stop, but may struggle to find the information or support they need. Providers who want to help often lack evidence to guide people. The study is about understanding the options for stopping psychiatric medications when people choose to stop, or when they must. My personal experience was that when I stopped taking psychiatric medications, I didn’t feel that I had any options because I didn’t know what my options were. Even though my psychiatrist was supportive of my plan, he knew next to nothing about stopping psychiatric medications. That is because there is no research on how to support people undergoing this process. That is why this research project is important. We need to take steps to create guidance on helpful options when people stop taking psychiatric medications — whatever their reason for stopping.
Our team created this survey based on what existing work in the field we could find that was relevant, as well our own experiences as people who had gone through the process of stopping psychiatric medications, and supported others in doing so. We hope this pilot study will foster more in-depth and robust research in the future. This survey is the first step in what we hope will be an expanding subject that builds evidence-based recommendations for supporting people coming off medications.
If you would like to participate in this study, you will first complete a screening questionnaire. If you are eligible, you will continue to the survey. It will take you about 20 to 30 minutes to complete the survey. Your answers will be anonymous. Your answers will be combined with others’ when we report results.
WHO CAN PARTICIPATE?
Adults ages 18+ in the United States who meet the following criteria:
● Labeled with a psychiatric diagnosis, such as schizophrenia, schizoaffective disorder, schizophreniform disorder, psychosis NOS, bipolar disorder I, bipolar disorder II, bipolar disorder NOS, major depressive disorder.
● In the last five years, took prescribed psychiatric medications for at least nine months before trying to come off them.
● Had a goal to completely stop taking one or two medications in the past five years.
We are particularly interested in hearing from people of color
and people who have experienced poverty.
Your answers will be anonymous.
The survey will ask you about:
- Your motivation for stopping medications.
- Supports you used.
- How you feel about stopping medication.
Your responses to this survey will help better support people coming off psychiatric medications.
PLEASE SHARE THIS ANNOUNCEMENT WIDELY!
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For questions about the survey, contact:
Laysha Ostrow, PhD