Abstract
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.
Highlights
Content and format of the curriculum We created a curriculum model that responds to the combination of distrust, misinformation, culture and faith-based beliefs, and family dynamics that lead to miscommunication with African Americans during the period in which they experience a life-limiting illness
We refer to our Lay health workers (LHWs) as comfort care supporters (CCSs) rather than as ‘‘navigators,’’ a term used to label some LHWs charged with facilitating advance care planning (ACP) or supporting persons with serious and life-limiting illnesses.[15,16,21,22]
In addition to preparing CCSs to engage in ACP, which is the most prevalent role of LHWs in other comparable programs, this curriculum prepares CCSs to support clients as needs arise in real time and to attend to the spiritual needs of clients
Summary
The care needs of persons with life-limiting illnesses has outpaced the ability of the health care workforce to provide care, and among those with life-limiting illnesses who are approaching the end-of-life, older African Americans experience significant health inequities.[1,2,3,4,5] Compared with whites, African Americans with lifelimiting illnesses are less likely to participate in advance care planning (ACP), or receive palliative care or hospice services, these services have been demonstrated to improve quality of care, and African. Americans who receive hospice care give it high-quality ratings.[5,6,7,8,9,10,11,12] African Americans are more likely to experience unmet needs for symptom management (pain and dyspnea), insufficient emotional support, absent or problematic physician communication, and lower overall satisfaction with care at the end of life.[6,7] Informal, community, or lay health workers a Jerry C.
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