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.
References: [1] 2023 National Healthcare Quality and Disparities Report. (n.d.). Agency for Healthcare Research and Quality. Retrieved March 2, 2024, from https://www.ahrq.gov/sites/default/files/wysiwyg/research/findings/nhqrdr/2023-nhqdr-rev.pdf
[2] El temblor esencial: Más común que el Parkinson, pero a menudo mal diagnosticado. (n.d.). Baptist Health South Florida. Retrieved March 4, 2024, from https://baptisthealth.net/es/baptist-health-news/essential-tremor-more-prevalent-than-parkinsons-but-often-misdiagnosed
[3] Hernández-Sarmiento, J. M. (2020). La educación en salud como una importante estrategia de promoción y prevención. https://www.redalyc.org/journal/2738/273863770021/html/
[4] Baur, C., Martinez, L. M., Tchangalova, N., & Rubin, D. (2018, March 9). A review and report of Community-Based Health Literacy Interventions. NCBI Bookshelf. https://www.ncbi.nlm.nih.gov/sites/books/NBK500372/
[5] Ben-Joseph, A., Marshall, C. R., Lees, A. J., & Noyce, A. J. (2020). Ethnic Variation in the Manifestation of Parkinson’s Disease: A Narrative Review. Journal of Parkinson’s disease, 10(1), 31–45. https://doi.org/10.3233/JPD-191763
[6] Calvo, R. (2015). Health Literacy and Quality of Care among Latino Immigrants in the United States. Health & Social Work, 41(1), e44–e51. https://doi.org/10.1093/hsw/hlv076
[7] Cantrell, C. (n.d.). Health Literacy Program with Centene Foundation for Quality Healthcare. National Hispanic Health Foundation. Retrieved February 10, 2024, from https://www.nhmafoundation.org/health-literacy-program-with-centene
[8] Centers for Disease Control and Prevention. (2023, July 11). What is health literacy?. Centers for Disease Control and Prevention; U.S. Department of Health & Human Services. https://www.cdc.gov/healthliteracy/learn/index.html
[9] Cool, V. (2023, July 19). Hispanics: the powerhouse of the U.S. labor force. Cool Associates LLC. https://coolassociatesllc.com/hispanics-the-powerhouse-of-the-u-s-labor-force/
[10] Damron, L., Litvan, I., Bayram, E., Berk, S., Siddiqi, B., & Shill, H. (2021). Hispanic Perspectives on Parkinson’s Disease Care and Research Participation. Journal of Alzheimer’s disease: JAD, 81(2), 809–819. https://doi.org/10.3233/JAD-210231
[11] Key, W. (2019). Understanding health literacy in the Latino population. Perspectives on Social Work, 13(1), 2–11. https://www.uh.edu/socialwork/academics/phd/doctoral-journal/perspectives-on-social-worksummer2019rev.pdf
[12] Light, S. W., Tomasino, F., Wescott, A., Bernstein Sideman, A., Vela, A., Possin, K. L., Penedo, F. J., & Wolf, M. S. (2023). Perceptions, beliefs, attitudes, and knowledge of US Latino adults pertaining to dementia and brain health: a systematic review. Aging & mental health, 1–12. Advance online publication. https://doi.org/10.1080/13607863.2023.2268050
[13] Llibre-Guerra, J. J., Prina, M., Sosa, A. L., Acosta, D., Jimenez-Velazquez, I. Z., Guerra, M., Salas, A., Llibre-Guerra, J. C., Valvuerdi, A., Peeters, G., Ziegemeier, E., Acosta, I., Tanner, C., Juncos, J., & Llibre Rodriguez, J. J. (2022). Prevalence of parkinsonism and Parkinson disease in urban and rural populations from Latin America: A community-based study. Lancet regional health. Americas, 7, 100136. https://doi.org/10.1016/j.lana.2021.100136
[14] Lock, S. (2023). The benefits of brain health to our economies. Nature Aging, 3(1), 1–2. https://doi.org/10.1038/s43587-022-00302-z
[15] Matthew, R. A., Orpinas, P., Calva, A., Bermudez, J. M., & Darbisi, C. (2020). Lazos Hispanos: Promising Strategies and Lessons Learned in the Development of a Multisystem, Community-Based Promotoras Program. The journal of primary prevention, 41(3), 229–243. https://doi.org/10.1007/s10935-020-00587-z
[16] Better Brain Health through Equity: Addressing Health and Economic Disparities in Dementia for African Americans and Latinos. (2021, March 29). Milken Institute. https://milkeninstitute.org/reports/better-brain-health-equity
[17] Nania, R. (2023, November 10). 5 mitos sobre la salud cerebral y los adultos mayores. AARP. https://www.aarp.org/espanol/salud/salud-cerebral/info-2020/mitos-y-verdades-personas-mayores.html?cmp=KNC-DSO-ESPANOL-Espanol-Health-NonBrand-Phrase-40884-Bing-HEALTH-BrainHealth-Phrase-NonBrand-ESP&&msclkid=0e1d8de877e1189ba3fde87f47fa9597&gclid=0e1d8de877e1189ba3fde87f47fa9597&gclsrc=3p.ds
[18] Ortiz, Z. (n.d.). Hispanos y latinos notan pérdida de memoria a una edad más temprana. AARP. https://www.aarp.org/espanol/salud/salud-cerebral/info-2015/hispanos-latinos-perdida-memoria-temprana.html
[19] Paasche-Orlow, M. K., & Wolf, M. S. (2007). The causal pathways linking health literacy to health outcomes. American journal of health behavior, 31 Suppl 1, S19–S26. https://doi.org/10.5555/ajhb.2007.31.supp.S19
[20] Pérez, L., Sichel, B., Chui, M., & Calvo, A. P. (2021). The economic state of Latinos in America: The American dream deferred. In McKinsey & Company. https://www.mckinsey.com/featured-insights/sustainable-inclusive-growth/the-economic-state-of-latinos-in-america-the-american-dream-deferred
[21] Pleasant A. (2014). Advancing health literacy measurement: a pathway to better health and health system performance. Journal of health communication, 19(12), 1481–1496. https://doi.org/10.1080/10810730.2014.954083
[22] Quiroz, Y. T., Solis, M., Aranda, M. P., Arbaje, A. I., Arroyo‐Miranda, M. L., Cabrera, L. Y., Carrasquillo, M. M., Corrada, M. M., Crivelli, L., Diminich, E. D., Dorsman, K. A., Gonzales, M. M., González, H. M., Gonzalez‐Seda, A. L., Grinberg, L. T., Guerrero, L. R., Hill, C. V., Jiménez‐Velázquez, I. Z., Guerra, J. J. L., Sexton, C. E. (2022). Addressing the disparities in dementia risk, early detection and care in Latino populations: Highlights from the second Latinos & Alzheimer’s Symposium. Alzheimer’s & Dementia, 18(9), 1677–1686. https://doi.org/10.1002/alz.12589
[23] Rikard, R. V., Thompson, M. S., McKinney, J., & Beauchamp, A. (2016). Examining health literacy disparities in the United States: a third look at the National Assessment of Adult Literacy (NAAL). BMC Public Health, 16(1). https://doi.org/10.1186/s12889-016-3621-9
[24] Rivera, S. (2021, March 6). Nuevos datos de atención, discriminación y renuencia sobre el Alzheimer en los latinos arrojan un futuro oscuro – Los Angeles Times. Los Angeles Times En Español. https://www.latimes.com/espanol/california/articulo/2021-03-06/nuevos-datos-de-atencion-discriminacion-y-renuencia-sobre-el-alzheimer-en-los-latinos-arrojan-un-futuro-oscuro
[25] Vila-Castelar, C., Fox-Fuller, J. T., Guzmán-Vélez, E., Schoemaker, D., & Quiroz, Y. T. (2022). A cultural approach to dementia – insights from US Latino and other minoritized groups. Nature reviews. Neurology, 18(5), 307–314. https://doi.org/10.1038/s41582-022-00630-z
[26] Zong, J. (2022, October 26). A Mosaic, Not a Monolith: A Profile of the U.S. Latino Population, 2000-2020. Latino Policy & Politics Institute. https://latino.ucla.edu/research/latino-population-2000-2020/
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 November 21, 2024.« Back to 2024 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/beyond-memorya-brain-health-awareness-kit-for-spanish-speaking-communities/