A Promotores Approach in the Management of Parkinson's Disease Interactive Session
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The document outlines a Promotores approach in managing Parkinson's disease through community outreach by the Muhammad Ali Parkinson Center, focusing on education, cultural awareness, and support for Hispanic families. It highlights the challenges Latinos face in accessing care, misconceptions about the disease, and the importance of active participation in treatment. The Promotores program aims to empower families by providing tailored education and resources while addressing barriers to healthcare access.
A Promotores Approach in the Management of Parkinson's Disease Interactive Session
- 1. A PROMOTORES APPROACH IN THE MANAGEMENT OF PARKINSON’S DISEASE Presented by: Claudia Martinez Hispanic Outreach Coordinator
- 2. The Muhammad Ali Parkinson Center (MAPC) Non for Profit Organization at the Barrow Neurological Institute Mission Services Largest Hispanic Outreach Program in the country Contact us! (602) 406-2453 www.maprc.com claudia.martinez001@dignityhealth.org
- 3. Parkinson’s Disease Second most common degenerative disorder of the brain 60.000 new cases diagnosed/year Chronic and progressive Malfunction and death of vital nerve cells in the brain – Dopamine Movement disorder, but also much more! Sleep and mood disturbances, fatigue, etc.
- 4. Many Unanswered Questions Unknown cause Unspecific symptoms Lack of a diagnostic test Many treatments but not a cure Latinos and whites have nearly double the rate of developing the condition over Asians and African Americans
- 5. Challenges to be Faced By the time the 1st motor symptoms appear, 70-80% of dopamine loss 2-5 years between symptoms’ onset and diagnosis For each person diagnosed, there are at least 2 other who have PD $14.4 billion economic burden
- 6. Challenges faced by Latinos Misconception of normal aging Misconception of PD / chronic disease Acceptance-Share the Dx with family Active participation-not only Dr. visits and medications Find the a provider able to understand the culture and address non halopathic healing methods (curanderismo, santeria, etc)
- 7. Challenges faced by Latinos Barriers to access services: Language Service Delivery Group/Community vs Family & Friends Transportation Fear Poverty - Latino elders Access to health care and medications Impacts nutrition Lower literacy levels
- 8. Program Development at the Muhammad Ali Parkinson Center Response to the needs of the population we serve Understanding and listening Identifying barriers Transportation Mobility issues/Fatigue Cultural beliefs Fear Creating alternative options Using successful models and personal background with a creative approach
- 9. Promotores Program Development Summer 2010 Group of families at need - Isolation Group of committed volunteers Opportunity for program development Program design Volunteer training Development of educational tools Evaluation tools Continuing education
- 10. Promotores Program Development Successful model to educate minorities on chronic diseases (HWO) Lay members of the community sharing language and culture Empathy and trust Build a bridge Empower families to participate in their care
- 11. Promotores Program Development Unique Self-recruitment process Family or paid caregivers Participated and valued our programs Convinced of the benefits that education, socialization and self-management can have when living with PD
- 12. Promotores Training College Classes at SMCC CHW class Intr. Human Relations Promotores Hope Network Volunteer training at SJHMC PD specific training provided by the MAPC Vision y Compromiso conference in LA
- 13. Program’s Layout and Educational Tools Pioneer Promotores Program for PD Flipchart and Educational manual 12 chosen topics Family and personal experiences Simple language, everyday expressions, participative. Images over text
- 14. Program’s Layout and Educational Tools Let’s think in terms of Quality of Life What topics will you include? Let’s think about the recipients What about program delivery? What about measuring tools? What are your thoughts?
- 15. Our Promotores Program “El Parkinson y Mi Familia” 12 topics include: Emphasis on active participation Life style changes/modifications (Exercise/Nutrition) Learning to get the most out of your doctor’s visits Socialization Family involvement and Team Building
- 16. Our Promotores Program “El Parkinson y Mi Familia” Home Visits Flexible delivery to meet family needs Time Location Dynamics Reciprocal learning experience Identify needs, connect them with valuable services and empowerment
- 17. Promotores Program Evaluation Tools Promotores Weekly Agenda – hours Visit Report Follow up form Families Pre and Post Questionnaires PDQ 39 (patient) Stanford self-efficacy questionnaire (patient) Zarit Burden Interview (caregiver) PD Questionnaire (both) Post program evaluation questionnaire (both)
- 18. Partial Results of our Promotores Program Pre & Post Evaluations – 27 Families Compartive Study with Mexicans with PD living in Mexico City Similar total scores PDQ 39 and Zarit Statistically significant difference in Social Support Abstract for the WPC 2013 (An outreach model to educate Hispanics with PD in Phoenix, AZ) Statistically significant improvement in social support and communication
- 19. Opportunities Awareness and Education M.D.S. International Congress in Dublin 2012 Vision y Compromiso Annual Conference L.A. 2012 & 2013 World Parkinson Congress in Montreal 2013 PDF news online MAPC Newsletter Univision and Canal 44 Advocacy: Aware in Care NPF Campaign Visit our table to receive a free Kit!
- 20. Invitation Raise awareness about PD in your community and/or organization Strive to deliver patient-centered care services Value and welcome Promotores role in your community Empower your community Keep thinking outside the box!
- 21. Questions?