Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2023 Aug;71(8):2601-2614.
doi: 10.1111/jgs.18236. Epub 2023 Jan 18.

"Advocating for what we need": A CBPR approach to advance care planning in the Latinx older adult community

Sarah Nouri  1 , Charissa H Tan  2 , Mirella Rangel  3 , Molly Wertz  4 , Adriana Sanchez  5 , Aurora Alvarado  6 , Erika Arreola  7 , Mara Quinn  1 , Steven Z Pantilat  1 , Courtney R Lyles  8 , Christine S Ritchie  9 , Rebecca L Sudore  10
Affiliations

"Advocating for what we need": A CBPR approach to advance care planning in the Latinx older adult community

Sarah Nouri et al. J Am Geriatr Soc. 2023 Aug.

Abstract

Background: Advance care planning (ACP) is low among Latinx older adults. We used community-based participatory research (CBPR) to identify ACP barriers/facilitators and design community-based ACP events.

Methods: In partnership with community-based organizations, clinicians, and local government, we formed a Latinx Community Committee (n = 13 community members). We then conducted 6 focus groups with Latinx-identifying, English or Spanish-speaking older adults (age ≥ 55), caregivers, and community leaders to assess ACP barriers/facilitators. We analyzed transcripts using thematic analysis and, based on these learnings, designed and implemented community-based ACP events. Using a validated survey, we assessed acceptability and pre-to-post-event ACP readiness (4-point scale; 4 = most ready; 0.2 change considered meaningful) with Wilcoxon signed-rank tests.

Results: Focus groups included 10 Spanish-speaking older adults, 8 caregivers, and 10 community leaders. Themes highlighted the importance of ACP (e.g., means of advocacy), barriers (e.g., how to start conversations), and facilitators (e.g., trusted community spaces) in the Latinx community. Ninety-seven people attended 5 events targeting 3 Latinx populations (LGBTQI+, intergenerational, and older adults broadly). Overall pre-to-post-event ACP readiness increased (2.62 (SD 0.97) to 2.95 (SD 0.93); p = 0.05). Readiness to document wishes increased significantly (2.44 (SD 1.0) to 2.98 (SD 0.95); p = 0.003). Most reported being comfortable attending events (85%) and would recommend them to others (90%).

Conclusions: This study describes a feasible, acceptable, and effective CBPR ACP intervention. Co-developed community events represent a promising approach to reducing disparities in ACP among the Latinx population.

Keywords: Latinx/Hispanic; advance care planning; community-based participatory research; health disparities; implementation science.

PubMed Disclaimer

Conflict of interest statement

Conflict of Interest: The authors have no conflicts.

Figures

Figure 1.
Figure 1.
Original art by Abner Recinos, commissioned by the Latinx Community Design Team, incorporating cultural imagery and advertising one of the community-based ACP events.
Figure 2.
Figure 2.
Original art by Abner Recinos, commissioned by the Latinx Community Design Team, incorporating cultural imagery and representing the diversity of the Latinx community.
See this image and copyright information in PMC

Comment in

References

    1. Sudore RL, Lum HD, You JJ, et al. Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel. J Pain Symptom Manage 2017;53(5):821–832.e1. doi: 10.1016/j.jpainsymman.2016.12.331 - DOI - PMC - PubMed
    1. Sudore RL, Hickman SE, Walling AM. Controversies About Advance Care Planning. JAMA 2022;327(7):685. doi: 10.1001/jama.2021.24727 - DOI - PubMed
    1. Harrison KL, Adrion ER, Ritchie CS, Sudore RL, Smith AK. Low Completion and Disparities in Advance Care Planning Activities Among Older Medicare Beneficiaries. JAMA Intern Med 2016;176(12):1872–1875. doi: 10.1001/jamainternmed.2016.6751 - DOI - PMC - PubMed
    1. Bazargan M, Cobb S, Assari S, Kibe LW. Awareness of Palliative Care, Hospice Care, and Advance Directives in a Racially and Ethnically Diverse Sample of California Adults. Am J Hosp Palliat Care 2021;38(6):601–609. doi: 10.1177/1049909121991522 - DOI - PubMed
    1. Shen MJ, Gonzalez C, Leach B, Maciejewski PK, Kozlov E, Prigerson HG. An examination of Latino advanced cancer patients’ and their informal caregivers’ preferences for communication about advance care planning: A qualitative study. Palliat Support Care 2020;18(3):277–284. doi: 10.1017/S1478951519000890 - DOI - PMC - PubMed

Publication types