TY - JOUR
T1 - Success of a Community-Based Delivery at Recruiting Individuals from Underserved Communities for an Observational Cohort Study of an Advance Care Planning Intervention
AU - Van Scoy, Lauren Jodi
AU - Witt, Pamela D.
AU - Bramble, Cindy
AU - Richardson, Christopher
AU - Putzig, Irene
AU - Currin, Lindsey
AU - Wasserman, Emily
AU - Tucci, Amy
AU - Levi, Benjamin H.
AU - Green, Michael J.
N1 - Funding Information:
The John and Wauna Harman Foundation was involved in the design of the study, but was not involved in data collection, management, analysis, interpretation or any aspect of manuscript production. Dr. Van Scoy has received funding from the National Institute of Health, Canadian Institute of Health Research, Society for Critical Care Medicine, the Francis Family Foundation, and Association for Clinical Pastoral Education. Dr. Levi has received funding from the National Institute of Health and Children's Miracle Network. Dr. Green has received funding from the National Institute of Health. Some authors may have additional funding sources unrelated to the subject matter of this manuscript and is available upon request. The REDCap database used in this project was funded by The Penn State Clinical & Translational Research Institute, Pennsylvania State University CTSA, NIH/NCATS Grant Number UL1 TR000127 and UL1 TR002014.
Publisher Copyright:
© 2021 American Academy of Hospice and Palliative Medicine
PY - 2022/2
Y1 - 2022/2
N2 - Background: Underserved and minority populations are often reluctant to engage in advance care planning and/or research often due to distrust in healthcare and/or research institutions. Aim: To determine if use of a community-based delivery model can facilitate recruitment of individuals from underserved communities in research about advance care planning. Design: Recruitment data are presented from a prospective, mixed methods observational cohort study that examined the feasibility and preliminary efficacy of a community-based delivery model involving an end-of-life conversation game to motivate participants to complete advance care planning behaviors. Event attendance and research participation data are reported. Setting/Participants: Game events were held in community venues in 27 states across the US in 2018–2019. The model involved leveraging existing social networks to recruit attendees and research participants to community game day events. Attendees were eligible for research if they were adults who read/spoke English. Results: A total of 1,122 individuals attended events at 53 sites. Participants generally reported low income (48% reported $30,000 annual income). At sites with research assistants, there was a 90% consent rate (92% were Black). At community outreach sites, 45% agreed to a follow-up research phone call (49% were Black). Conclusions: Use of the community-based delivery model successfully engaged undeserved communities in a research-based advance care planning related community outreach event. This model may be useful for overcoming underserved and minority populations’ skepticism and distrust of healthcare and research that is a common barrier to progress in health agendas, especially advance care planning.
AB - Background: Underserved and minority populations are often reluctant to engage in advance care planning and/or research often due to distrust in healthcare and/or research institutions. Aim: To determine if use of a community-based delivery model can facilitate recruitment of individuals from underserved communities in research about advance care planning. Design: Recruitment data are presented from a prospective, mixed methods observational cohort study that examined the feasibility and preliminary efficacy of a community-based delivery model involving an end-of-life conversation game to motivate participants to complete advance care planning behaviors. Event attendance and research participation data are reported. Setting/Participants: Game events were held in community venues in 27 states across the US in 2018–2019. The model involved leveraging existing social networks to recruit attendees and research participants to community game day events. Attendees were eligible for research if they were adults who read/spoke English. Results: A total of 1,122 individuals attended events at 53 sites. Participants generally reported low income (48% reported $30,000 annual income). At sites with research assistants, there was a 90% consent rate (92% were Black). At community outreach sites, 45% agreed to a follow-up research phone call (49% were Black). Conclusions: Use of the community-based delivery model successfully engaged undeserved communities in a research-based advance care planning related community outreach event. This model may be useful for overcoming underserved and minority populations’ skepticism and distrust of healthcare and research that is a common barrier to progress in health agendas, especially advance care planning.
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U2 - 10.1016/j.jpainsymman.2021.09.021
DO - 10.1016/j.jpainsymman.2021.09.021
M3 - Article
C2 - 34662724
AN - SCOPUS:85120832441
VL - 63
SP - e149-e154
JO - Journal of Pain and Symptom Management
JF - Journal of Pain and Symptom Management
SN - 0885-3924
IS - 2
ER -