and perspectives of interviewees). All data were analyzed using the
qualitative analysis software QDA Miner (For more information,
visit provalisresearch.com.)*
Results
Six major themes emerged from the initial results. Table 1
describes these themes in detail.
Discussion
Initial findings provide insight into the barriers that can be
addressed when engaging with individuals in the Hispanic PD
community. As with other diseases, limited knowledge and
awareness of clinical research opportunities for Hispanic people
with PD is a challenge. This is perpetuated by a lack of locally
available educational materials in Spanish, requiring individuals
in the Hispanic PD community to go to greater lengths to seek
information, such as from Spanish-speaking countries, like
Spain or Mexico, to learn more about Parkinson’s disease and
clinical research. Physicians underscored this finding, noting
they have limited materials in Spanish for communicating with
both patients and the larger community about Parkinson’s
disease and research.
such as family members, care partners and physicians are
a critical conduit of information, and should be involved in
any engagement or recruitment strategy. Family members in
particular play crucial roles in making decisions about care and
treatment, as well as research participation. Materials should
be tailored to enable discussion about research participation
among family members. A somewhat surprising finding, and
potential facilitator, is the number of individuals in the Hispanic
PD community who experience comorbidities, such as diabetes,
and are therefore familiar with clinical research because of these
comorbidities. Collaborating with disease-focused advocacy
groups that already engage individuals in the Hispanic community
might serve as a point of entry for involving the Hispanic
community in PD research.
Future Directions
The UCSD study findings will be finalized and incorporated into
an educational material toolkit. These materials will be available in
English, Spanish and a combination of English and Spanish, and will
be offered on The Michael J. Fox Foundation website in Fall 2018.
(For additional information on this toolkit and how you can use it
in your research, contact [email protected].)
The research also pointed to a few facilitators for engaging with
individuals in the Hispanic PD community. Certain stakeholders,
Table 1
Theme Overview
Pre-diagnosis and
Diagnosis Explores the initial physical and emotional journey that a patient undergoes when recognizing PD
symptoms and seeking a diagnosis
PD Care Looks at the second leg of the patient journey with PD, specifically the learning curve with
medications (adherence and optimization)
Living with PD Examines changes that have occurred in individuals’ lives after a PD diagnosis and how they talk
about living with PD
Role of Family and
Care Partner Provides insight into the ways in which family and care partners are gatekeepers of information
and play a large role in decisions about care and treatment, including research participation
PD Knowledge Highlights various resources that individuals use to learn more about PD, different information-
seeking behaviors and barriers that individuals experience when trying to learn more about
research; attitudes, values and motivations around research participation
Research Engagement Dives deeper into specific barriers and facilitators to research participation
*https://provalisresearch.com/products/qualitative-data-analysis-software/freeware/
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https://www.capilanou.ca/psychology/student-resources/research-guidelines/Phenomenological-Research-Guidelines/
Chapter 3 — Building a Recruitment Strategy and Toolkit
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