Helping People with Parkinson’s Disease Overcome Barriers

 

People with PD who are from underserved communities — those who are low income, speak English as a second language, live in rural areas, or are members of minority groups often face unique barriers that affect their access to quality care.

Through a generous grant from Neurocrine Biosciences, APDA conducted focus groups in Hispanic and African American communities in New York, Chicago and Los Angeles. Our goal is to better understand the experiences of Hispanic and African American PD patients, their family members, and care partners; identify barriers to diagnosis and treatment; and explore unmet needs and gauge reactions to community outreach and service solutions.

We learned so much as we listened to patients and care partners discuss their experiences with diagnosis, finding the right neurologist and coping with the disease as a family, including:

• The road to diagnosis was not easy and many had to wait a long time before seeing a doctor. In addition, many expressed concern over lack of insurance and therefore, lack of access to medical care.
• Many wanted to find a “one stop shop” for resources that included medical care, community assistance and help for care partners.
• Finding a support group that felt comfortable and reflected the person’s culture and life experience was identified as an important need.

As a result of this research, a social group for African American men was started in one community; additional APDA publications were translated into Spanish, and the APDA Helpline 1-800-223-2732 has Spanish-speaking staff available to speak to patients and refer them to resources in their communities.

Research like this can help address unmet needs and improve access to health care for all people diagnosed with PD. APDA will continue to conduct focus groups online so we can learn of other important ways to meet the needs of patients who have barriers to care.