Category: Education in Movement Disorders
Objective: To develop an interactive workshop in Spanish that provides basic information about brain health and its importance so that community members can identify risk factors and facilitate early recognition of Neurodegenerative diseases(NDD) including Parkinson’s Disease(PD) and Essential tremor(ET).
Background: NDD are associated with high rates of morbidity and stress.Early recognition of these disorders is critical for facilitating a timely diagnosis and treatment options to improve quality of life.Spanish-speaking communities face a multitude of barriers to early diagnosis of NDD including lack of awareness of NDD signs and symptoms, stigma and misperceptions about brain health disorders.Engagement in existing resources is impeded by stigmatizing language and inadequate awareness of cultural norms.
Method: We sought to develop a curriculum to create heightened awareness of brain health and symptoms of NDD.We conducted this project in 4 phases.First,a working group of 6 medical providers,one of them living with PD,convened with a community health educator and a graphic design expert living with PD to develop the framework and outline of content.Second, the team reviewed the scientific literature and became familiar with existing research on barriers to engagement with educational resources to inform content development.Third, the working group collaboratively developed,reviewed and edited the content in Spanish.Fourth,a panel of experts reviewed and provided feedback on the curriculum.Finally,the curriculum was modified and finalized along with supplementary materials,surveys and resources to share with participants.
Results: The kit contains a manual giving specific details of what to do and suggestions on what to say during the 60-minute workshop,didactic materials to make the workshop experiential and interactive,information to connect participants to local resources (such as community health clinics).The workshop will include an evaluation component via surveys at the in-person workshops to learn about the level of knowledge,healthcare needs and personal goals of the community to improve brain health.
Conclusion: Awareness-raising campaigns developed in Spanish in partnership with the community are vital to improve basic brain health knowledge,and to facilitate early diagnosis and treatment of NDD such as PD and ET in Spanish-speaking communities.We aim to empower the community to take better care of their brain health.
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To cite this abstract in AMA style:
M. Alosilla, C. Alvarez-Pizzillo, S. Avion-Martinez, J. Cabassa, B. Cavedoni Urbano, L. Crawford, M. de Leon, E. Fernandez Toledo, G. Moya-Gale, S. Perez, N. Walker-Pizarro, H. Shah. Beyond Memory:A Brain Health Awareness Kit for Spanish-speaking Communities [abstract]. Mov Disord. 2024; 39 (suppl 1). https://www.mdsabstracts.org/abstract/beyond-memorya-brain-health-awareness-kit-for-spanish-speaking-communities/. Accessed October 6, 2024.« Back to 2024 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/beyond-memorya-brain-health-awareness-kit-for-spanish-speaking-communities/