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J Pain Symptom Manage · Feb 2022
Observational StudySuccess of a community-based delivery at recruiting individuals from underserved communities for an observational cohort study of an advance care planning intervention.
- Lauren Jodi Van Scoy, Pamela D Witt, Cindy Bramble, Christopher Richardson, Irene Putzig, Lindsey Currin, Emily Wasserman, Amy Tucci, Benjamin H Levi, and Michael J Green.
- Departments of Medicine (L.J.V.S., P.D.W, M.J.G.), Penn State College of Medicine, Hershey, Pennsylvania, USA; Department of Humanities (L.J.V.S., B.H.L., M.J.G.), Penn State College of Medicine, Hershey, Pennsylvania, USA; Department of Public Health Sciences (L.J.V.S., E.W.), Penn State College of Medicine, Hershey, Pennsylvania, USA. Electronic address: lvanscoy@pennstatehealth.psu.edu.
- J Pain Symptom Manage. 2022 Feb 1; 63 (2): e149-e154.
BackgroundUnderserved 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.AimTo determine if use of a community-based delivery model can facilitate recruitment of individuals from underserved communities in research about advance care planning.DesignRecruitment 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/ParticipantsGame 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.ResultsA 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).ConclusionsUse 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.Copyright © 2021 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
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