The goal of this translational research application is to establish the feasibility of implementing an innovative health care delivery program based in the African American (AA) Church, which incorporates aspects of culture and spirituality in the care of AAs with life limiting illnesses (LLIs). Health systems have been unsuccessful in engaging African Americans in palliative care and hospice (PCH) programs. Despite evidence that PCH programs are beneficial, only 9 percent of hospice enrollees are AA and much misinformation and distrust influences the response of AAs to discussions about PCH. For persons at the end of life (EOL), spiritual concerns may be intensified, making the AA Church an ideal venue to train community health workers who can bridge the communication gap about EOL care among health professionals, patients and their families. The proposed program consists of two components: 1) community health workers, whom we call comfort care supporters (CCSs), trained as peer advisors for adults with LLIs, and 2) education activities and materials targeting the leadership and congregants for purposes of inducing a supportive attitude about PCH within the church culture. We employ the RE-AIM evaluation framework to three specific aims:
Aim 1. To measure our capacity to recruit and train comfort care supporters (CCSs) and to establish a visit program with persons with LLIs. We will recruit and train 8-12 CCSs from each of four churches (n=40). The training consists of modular, thematic classroom sessions and home visits by the CCSs. We hypothesize that: 1) we will be able to train the specified number of CCSs, 2)CCSs will attain the targeted knowledge and skills as measured by instruments tailored to the training, 3) we will identify persons with LLI (n=73-110), and 4) persons with LLI and a family member, if present, will rate the CCS visits as helpful.
Aim 2. To assess the attitudes about PCH of pastors, other church leaders, and congregants and promote a receptive attitude by PCH through educational workshops and dissemination of materials. We target three groups influential to the attitude of the organization about PCH:1) the pastors (20), 2) other leaders of church groups(196), and 3) self -selected congregants (240) to participate in education workshops, and all church members receive a DVD and materials about EOL care. We hypothesize a change in attitudes among participants attending workshops as shown by attitude scales and that the pastors and church leaders will rate the CCS activities and the program as a whole as beneficial.
Aim 3. To identify organizational factors that influence adoption, implementation and maintenance of the training program, CCS visits, and the workshops and materials. We will interview all pastors of the churches and will elicit a description of the structure and policies of the churches to assess attitude and organizational factors that may account for variations in adoption and implementation of the program.
This translational research application represents the feasibility stage of an innovative health care delivery model designed to incorporate aspects of culture, spirituality, and the African American Church community in the care of African Americans with life limiting illnesses. Health professionals and health systems have been unsuccessful in engaging American Americans in hospice and other palliative care programs. This application responds to this gap in health care delivery by proposing a new health care model that has the potential to reduce this disparity in access and quality of care.