RESUMO
Purpose: African Americans with life-limiting illnesses experience significant health inequities. Lay health workers (LHWs) may help overcome existing challenges of communicating with African Americans about advance care planning (ACP) and end-of-life decision-making. Church-based LHWs have some advantages over other LHWs but no curriculum exists to fully prepare them. This article describes the development, content, format, and implementation of a curriculum designed to meet this need. Methods: We created a church-based curriculum to train African American, LHWs as communications-facilitators who can support persons with life-limiting illnesses, not only with ACP but also with issues that arise as illnesses progress. Learners are church members whom we call comfort care supporters. The curriculum organizes the LHW interactions with clients by the mnemonic LIGHT: Listening, Identifying, Guiding, Helping, and Translating. Results: The final curriculum consists of three parts: (1) a 26-h classroom component delivered in nine modules organized around eight themes: meaning and prognosis of a life-limiting illness, spirituality and the meaning of death, understanding the dying process, major decisions and choices, goals of care, end-of-life services, and resources, intrafamily communication, and role and activities of the LHW; (2) a visit component; and (3) experiential, case-based discussions during monthly meetings. Conclusions: LHWs may improve quality of care and thus reduce health inequities at the end-of-life. Preparing LHWs for conversations about ACP is necessary but insufficient. This curriculum also prepares LHWs to attend to the spiritual needs of clients and to support clients with their other needs as their illness progresses.
RESUMO
BACKGROUND: As the spiritual family for many African Americans, the church presents an opportunity to improve communication about palliative care and hospice (PCH). However, sustainable change in church-based, practices related to PCH requires a compreshensive, multilevel approach. OBJECTIVES: Our primary goal was to encourage churches to embrace palliative care and hospice as acceptable alternatives for end-of-life care by creating venues to improve communications about PCH. This paper compares our experience in 5 churches, revealing lessons learned and the challenges of engaging, implementing, and maintaining a multilevel approach in the churches, and our strategies in response to those challenges. DESIGN: Descriptive study Settings/Subjects: We partnered with 5 African American Churches in the Philadelphia Region. We targeted pastors, other church leaders, and congregants. METHODS: We created 1) a leadership-education program, 2) an intensive training program for church-based lay companions (health visitors), and 3) messages and materials to increase knowledge and influence attitudes about PCH. RESULTS: We impacted church structures and policies as shown by: integration of the project activities into existing church structures, new church-based programs dedicated to training lay companions and church leaders, new roles for church members (church liaisons) dedicated to this project, and new materials and messages focusing on PCH for the general congregation. CONCLUSIONS: We demonstrated the feasibility of engaging the African American church in a comprehensive, multilevel process designed to improve communication about palliative care and hospice (PCH). Our success demonstrates the potential of the African American church as a community resource for lay education about PCH.