a promotores approach in the management of parkinson's disease interactive session

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 claudia.martinez001@dignityhealth.org

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?