Date Presented 04/04/19
The purpose of this presentation is to educate OT practitioners about functional movement disorder (FMD) from the perspective of the people living with the condition. It will include data from five participants living with FMD about how the disorder has impacted their participation in major areas of life. It aims to raise awareness about the disorder and the opportunity for the OT profession to play a key role in improving the quality of life for people living with FMD.
Primary Author and Speaker: Stephanie Zuba-Bates
Contributing Authors: Perla Serrano, Peggy Pareti, Alma Lopez, Fatimah Chaudhary, Kassi Cambron, Erika Banks
PURPOSE: This qualitative research study explored the lived experience of people with functional movement disorder (FMD) including how it impacted their quality of life and participation in life activities. Functional movement disorder is characterized by abnormal motor movements including tremors, abnormal gait, paresis, and dystonia. There is currently no known underlying physiological cause for this disorder which has made the path to getting diagnosed with FMD frustrating and challenging for both the clients and medical professionals. In addition, many healthcare professionals including occupational therapy practitioners are unfamiliar with the disorder, which can further delay access to treatment interventions. An extensive literature review revealed a gap in the research investigating how having FMD impacts the daily functioning of individuals with this disorder as well as what interventions have been beneficial to them from their perspective. This study aimed to close this gap by answering the following questions: 1) What is the lived experience of individuals with FMD?; 2) How has FMD impacted their participation in major areas of life?; and, 3) What treatment(s) have people with FMD found to be effective in improving their quality of life? This presentation aims to educate occupational therapists about FMD from the perspective of those living with the disorder and how occupational therapists can have a major impact on the quality of life for these individuals.
DESIGN: A naturalistic, phenomenological approach was used to answer the research questions. Participants were recruited through social media support pages as well as and FMD informational resource websites. The criteria to participate in the study was individuals age 18 and older who reported being diagnosed with functional movement disorder by a medical professional.
METHOD: A semi-structured interview guide was developed by the researchers. The data was collected using the semi-structured interview guide through telephone or web video chat interviews. Five individuals living with FMD met the inclusion criteria and consented to participate in the study. The interviews were audio recorded and transcribed by the researchers. The transcriptions were coded by multiple researchers and the data was analyzed for common themes among the five participants.
RESULTS: Common themes including the variability of symptoms of the disorder; challenges to receiving a diagnosis; frustrations with and distrust of health care professionals; not being believed by health care professionals; the impact of FMD on the participant’s ability to perform daily activities in all major areas; and, strategies for living with the symptoms of FMD.
CONCLUSION: All of the participants in the study reported frustration with the medical community regarding the lack of awareness of the disorder and how they were treated by medical professionals. In addition, all of the participants reported having to modify their daily activities, roles and routines as a result of the disorder. This is an area where occupational therapy practitioners may intervene to improve the quality of life of these individuals. In order for OT practitioners to provide these services, they must be aware of the disorder and must advocate for clients to be referred to OT services. In addition, referring physicians and other health professionals need to understand how having FMD impacts the daily functioning of people living with the disorder and how OT services can intervene to improve their quality of life. This proposal aims to educate OT practitioners about FMD and how OT can play a role in advocating for these clients to receive OT services.
References
Bosworth, T. (2017). Rehabilitation Program Improves Symptoms of Functional Movement Disorders. Neurology Reviews, 25(4), 26-27.
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.
Edwards, M.J. & Bhatia, K.P. (2012). Functional (psychogenic) movement disorders: merging mind and brain. The Lancet Neurology. Vol 11(3), 250-260.
Hallett, M. (2017). The most promising advances in our understanding and treatment of functional (psychogenic) movement disorders. Parkinsonism & Related Disorders, 46.
