A Promotores Approach in the Management of Parkinson's Disease Interactive Session Claudia Martinez Hispanic Outreach Coordinator Muhammad Ali Parkinson Center Movement Disorders Clinic Mano y Corazón Binational Conference of Multicultural Health Care Solutions, El Paso, Texas, September 27-28, 2013

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?