4.5 Article

Success of a Community-Based Delivery at Recruiting Individuals from Underserved Communities for an Observational Cohort Study of an Advance Care Planning Intervention

Journal

JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
Volume 63, Issue 2, Pages E149-E154

Publisher

ELSEVIER SCIENCE INC
DOI: 10.1016/j.jpainsymman.2021.09.021

Keywords

Advance care planning; cohort studies; terminal care; minority health; medically underserved areas; community-institutional relations; recruit-; ment activities

Funding

  1. National Institute of Health
  2. Canadian Institute of Health Research
  3. Society for Critical Care Medicine
  4. Francis Family Foundation
  5. Association for Clinical Pastoral Education
  6. Children's Miracle Network
  7. Penn State Clinical & Translational Research Institute, Pennsylvania State University CTSA
  8. NIH/NCATS [UL1 TR000127, UL1 TR002014]

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The use of a community-based delivery model successfully engaged underserved communities in research about advance care planning, overcoming skepticism and distrust among these populations.
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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