a promotores approach in the management of parkinson's disease interactive session
DESCRIPTION
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, 2013TRANSCRIPT
A PROMOTORES APPROACH IN THE MANAGEMENT OF PARKINSON’S DISEASE
Presented by:Claudia MartinezHispanic Outreach Coordinator
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 [email protected]
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.
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
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
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)
Challenges faced by Latinos
Barriers to access services: Language Service Delivery Group/Community vs Family & Friends Transportation Fear Poverty - Latino elders
Access to health careand medications
Impacts nutrition Lower literacy levels
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
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
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
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
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
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
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?
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
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
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)
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
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!
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!
Questions?