Date Presented 03/27/20
The purpose of this research is to present findings on the lived experience of people living with FMD. It aims to educate OT practitioners and students about FMD from the voices of those living with it. It will include an analysis of data from qualitative interviews with nine people with FMD and a discussion of the major themes identified by the research participants, including what they would like healthcare professionals to know.
Primary Author and Speaker: Stephanie Zuba-Bates
Additional Authors and Speakers: Antonia Gustaitis, Zeba Khan, Lisa Musto
Contributing Authors: Jae Lim, Elizabeth Ramirez
PURPOSE: The purpose of this research project is to explore the lived experiences of people living with Functional Movement Disorder (FMD). Functional movement disorder is characterized by abnormal motor movements including tremors, abnormal gait, paresis, and dystonia with no known underlying pathophysiological cause. Current research estimates that FMD may account for 2-20% of clients seen by neurologists and is second behind headaches for referrals to neurologists worldwide. Emerging research has shown an interdisciplinary approach including occupational therapy (OT) may help people with FMD make functional gains. However, many health care professionals including occupational therapists are either not aware of the disorder or are unsure of how to treat clients with it. In addition, there is little literature on how FMD impacts the quality of life of those living with the disorder. This research aimed to bridge this gap by answering the following questions: 1) What is the lived experience of people living with FMD?; 2) What are specific areas of life that are challenging for people living with FMD?; and, 3) What interventions have people with FMD found effective?
DESIGN: This research study used a naturalistic approach to explore the lived experiences of people with FMD. Participants were recruited through Facebook and other social media support group sites for people with FMD. The inclusion criteria was adults over 18 years of age with a self-reported diagnosis of FMD. Obtain consent was obtained prior to beginning the phone interview.
METHOD: Participants participated in one semi-structured phone interview completed by student researchers that included questions about the diagnostic process; how FMD has impacted their participation in daily activities; and, experience with health care professionals including occupational therapists. Interviews were transcribed, and data was coded by 2 researchers, compared for consistency, and analyzed for common themes within the larger research group of 5 student researchers guided by their research mentor.
RESULTS: Nine individuals with FMD completed the interview. Although the participants experienced a variety of symptoms related to FMD, all reported that the disorder disrupted all major areas of life and participation including activities of daily living, instrumental activities of daily living, community mobility, work, and leisure participation. Participants reported using various strategies to cope with their symptoms that they found through a trial and error process. Additionally, the theme of not being believed by health care professionals also emerged. The majority of the individuals had not had OT or did not know all that OT could offer.
CONCLUSIONS: Results indicate the need for an increased awareness of FMD among healthcare providers, including occupational therapists. In addition, there is an opportunity for occupational therapists to have a major role in providing care to individuals with FMD to improve their quality of life. Many of the participants had come up with compensatory strategies on their own, but having access to OT services would likely make this more efficient and have a greater impact on those living with the disorder. Occupational therapists also need to increase their awareness of this disorder in order to advocate for people with FMD to be referred to OT services as well as to provide quality care.
References
Dahlhauser, S. E., Theuer, A., & Hollman, J. (2017). Satisfaction and Occupational Performance in Clients with Functional Movement Disorder. Open Journal Of Occupational Therapy (OJOT), 5(2), 1-7.
Gardiner, P., MacGregor, L., Carson, A., & Stone, J. (2017). Occupational therapy for functional neurological disorders: A scoping review and agenda for research. CNS Spectrums, 23(3), 205-212.
Hallett, M. (2018). The most promising advances in our understanding and treatment of functional (psychogenic) movement disorders. Parkinsonism & Related Disorders, 46, S80-S82.
Jacob, A. E., Kaelin, D. L., Roach, A. R., Ziegler, C. H., & LaFaver, K. (2018). Motor retraining (MoRe) for functional movement disorders: Outcomes from a 1-week multidisciplinary rehabilitation program. PM & R: The Journal of Injury, Function, and Rehabilitation, doi:10.1016/j.pmrj.2018.05.011.
