Advance Care Planning for African American Caregivers of Relatives With Dementias: Cluster Randomized Controlled Trial

Abstract

Background and Objectives: African-American family caregivers may have insufficient knowledge to make informed end-of-life (EOL) decisions for relatives with dementias. Advance Care Treatment Plan (ACT-Plan) is a community-based education intervention to enhance knowledge of dementia and associated EOL medical treatments, self-efficacy, intentions, and behavior (written EOL care plan). This study evaluated efficacy of the intervention compared to attention control. Research Design and Methods: In a theoretically based, 2-group, cluster randomized controlled trial, 4 similar Midwestern urban megachurches were randomized to experimental or control conditions. Each church recruited African-American caregivers, enrolling concurrent waves of 5 to 9 participants in 4 weekly 1-hour sessions (358 total: ACT-Plan n = 173, control n = 185). Dementia, cardiopulmonary resuscitation (CPR), mechanical ventilation (MV), and tube feeding (TF) treatments were discussed in ACT-Plan classes. Participants completed assessments before the initial class, after the final class (week 4), and at week 20. Repeated measures models were used to test the intervention effect on changes in outcomes across time, adjusting for covariates as needed. Results: Knowledge of CPR, MV, TF, and self-efficacy to make EOL treatment decisions increased significantly more in the ACT-Plan group at weeks 4 and 20. Knowledge of dementia also increased more in the ACT-Plan group at both points, reaching statistical significance only at week 20. Intentions to make EOL treatment decisions and actually an advance care plan were similar between treatment arms. Discussion and Implications: Findings demonstrate promise for ACT-Plan to increase informed EOL treatment decisions for African American caregivers of individuals with dementias.

Disparities in Palliative and Hospice Care and Completion of Advance Care Planning and Directives Among Non-Hispanic Blacks: A Scoping Review of Recent Literature

“…26,63,71,78,92,121,219 Such initiatives deployed in faith-based settings would likely increase minority participation in end-of-life and advance care planning. 249,250 The finding that frequency of religious service attendance is positively associated with completion of an advance directive is exciting news for advocates promoting advance care planning in non-Hispanic Black communities. In order to promote advance directives among non-Hispanic Black communities, multifaceted church-based investigational interventions are needed that include 1) minority health care providers, 2) church leaders, 3) community advocates and leaders, 4) family members who have experienced losing loved ones with or without an advance directive, and 5) legal counselors.…”

Advance Care Planning and End of Life Care Literacy Initiatives in African American Faith Communities: A Systematic Integrative Review

“…A summary of the results of the integrative review is presented in Table 2. Of the 8 articles in this review, 2 were quantitative studies 22,23 and 6 were qualitative. [24][25][26][27][28][29] The studies drew participants from over 31 Christian (predominantly Baptist) AA churches in both urban (n ¼ 4) and rural (n ¼ 3) settings in the eastern part of the United States and Texas.…”

“…Other demographic data collected included education, religion, income, employment, health status, and marital status. 23,24,27,28 Recruitment and retention challenges were common to several studies. The survey by Hendricks Sloan et al (2016) yielded 930 responses out of 2500 parishioners present (30% response rate).…”

“…24,28,29 Of the 3 studies that conducted interventions, two were descriptive 24,26 and one was experimental. 23 Bullock's intervention involved a presentation-style educational program conducted in the church sanctuary to teach participants about ACP and ADs, and the outcome measure was AD completion. 24 Johnson et al (2019) general congregation.…”

“…26 The experimental study by Bonner et al consisted of educational sessions about EOL treatments and dementia compared with a health promotion educational intervention for the control group. 23 In order to build rapport with participating churches, most studies found it important to connect to church leadership prior to initiating the study. [22][23][24][25][26][27]29 Some investigators also developed community partnerships to connect with the participating churches.…”