Investigating Barriers to Advance Care Planning in Hispanic People with Parkinson’s Disease: A Qualitative Study
Monica Abou-Ezzi1, Taylor Peabody2, Alberto Cruz3, Lucila Hernandez3, Henry Moore4, Silvia Vargas Parra3, Danielle Shpiner5
1Boston University Chobanian & Avedisian School of Medicine, 2The University of Tennessee Medical Center, 3University of Miami, 4University of Miami - Miller School of Medicine, 5University of Miami Miller School of Medicine
Objective:

To investigate barriers to advance care planning (ACP) among Hispanic people with Parkinson’s Disease (PWP).

Background:

ACP is a tool for optimizing end-of-life care and is an important aspect of healthcare for PWP. However, ACP has historically been under-utilized within the Hispanic community. Given the unique challenges in Parkinson’s disease and lack of prior studies on this intersect, we aimed to identify barriers to ACP among Hispanic PWP at our center.

Design/Methods:

We recruited Hispanic PWP and care partners from a diverse academic Movement Disorders clinic for focus groups (in-person or virtual; 5-7 participants each) or one-on-one semi-structured interviews (virtual). Sessions were in English or Spanish. Qualitative data was transcribed and translated, then analyzed via an inductive approach with NVivo 15 software using 2 independent coders.

Results:

We conducted 5 focus groups (2 in-person, 3 virtual) and 15 semi-structured interviews with a total of 47 participants, at which point data saturation was reached. We identified themes relating to (1)prior ACP experience/familiarity, (2)Parkinson’s-specific considerations, (3)cultural differences, and (4)ACP learning preferences. The results highlight less ACP exposure for individuals originating from Latin America, especially those less acclimated to U.S. culture. Among those familiar with ACP, many reported prior discussions but had not written down or formalized their thoughts. Patients with milder symptoms or newer diagnosis of Parkinson’s disease were also less likely to pursue ACP due to feelings of denial and/or desire to live in the present. There was heavy emphasis on family regarding involvement in ACP discussions and expectation of care from family members mixed with fear of overburdening them. Preferences for ACP discussion included: desire for their neurologist to initiate the conversation when appropriate, more time during doctor visits, and written materials on the topic.

Conclusions:

These qualitative findings address an important gap in care for Hispanic PWP and identify potential avenues for intervention.

10.1212/WNL.0000000000216811
Disclaimer: Abstracts were not reviewed by Neurology® and do not reflect the views of Neurology® editors or staff.