Developing and Testing the Feasibility of a Culturally Based Tele-Palliative Care Consult Based on the Cultural Values and Preferences of Southern, Rural African American and White Community Members: A Program by and for the Community

Abstract

Purpose: Lack of appreciation of cultural differences may compromise care for seriously ill minority patients, yet culturally appropriate models of palliative care (PC) are not currently available in the United States. Rural patients with life-limiting illness are at high risk of not receiving PC. Developing a PC model that considers the cultural preferences of rural African Americans (AAs) and White (W) citizens is crucial. The goal of this study was to develop and determine the feasibility of implementing a culturally based PC tele-consult program for rural Southern AA and W elders with serious illness and their families, and assess its acceptability to patients, their family members, and clinicians. Methods: This was a three-phase study conducted in rural Beaufort, South Carolina, from January 2013 to February 2016. We used Community-Based Participatory Research methods, including a Community Advisory Group (CAG) with equal numbers of AA and W members, to guide the study. Phase 1: Cultural values and preferences were determined through ethnic-based focus groups comprising family members (15 W and 16 AA) who had cared for a loved one who died within the past year. We conducted a thematic analysis of focus group transcripts, focused on cultural values and preferences, which was used as the basis for the study protocol. Phase 2: Protocol Development: We created a protocol team of eight CAG members, two researchers, two hospital staff members, and a PC physician. The PC physician explained the standard clinical guidelines for conducting PC consults, and CAG members proposed culturally appropriate programmatic recommendations for their ethnic group for each theme. All recommendations were incorporated into an ethnic-group specific protocol. Phase 3: The culturally based PC protocol was implemented by the PC physician via telehealth in the local hospital. We enrolled patients age ‡ 65 with a life-limiting illness who had a family caregiver referred by a hospitalist to receive the PC consult. To assess feasibility of program delivery, including its acceptability to patients, caregivers, and hospital staff, using Donebedian's Structure-Process-Outcome model, we measured patient/caregiver satisfaction with the culturally based consult by using an adaptation of FAMCARE-2. Results: Phase 1: Themes between W and AA were (1) equivalent: for example, disrespectful treatment of patients and family by hospital physicians; (2) similar but with variation: for example, although religion and church were important to both groups, and pastors in both ethnic groups helped family face the reality of end of life, AA considered the church unreservedly central to every aspect of life; (3) divergent, for example, AAs strongly believed that hope and miracles were always a possibility and that God was the decider, a theme not present in the

Can you hear me now?: Improving palliative care access through telehealth

“…I would want a body there with me…”) and (2) dispelling fear or apprehension by associating telehealth with a personal experience (“yeah, if you coulda seen them [the doctor], it woulda been in‐person, face‐to‐face…. but that's the only difference… might as well jump in whole hog and, you know, like Skype‐ing or whatever… [we are] already doing it.”; Elk et al, 2020). Based on Phase 2 focus groups, the AA CAG members were instrumental in creating recommendations to help ease fear or apprehension around telehealth; which materialized in the protocol that the PC physician would follow.…”

“…A multiphase project, “Community‐generated PC telemedicine for Rural Black and White Elders,” initially funded by an R21 (the National Institutes of Health [NIH]; National Institute of Aging [NIA], (Elk et al, 2020) and currently being tested in an NINR‐funded randomized trial created a culturally tailored video‐consult for rural African American (AA) and White elders. The feasibility pilot was conducted in three phases in Beaufort, SC and used community‐based participatory research methods to develop and test the intervention and study procedures (Elk et al, 2020). In Phase 1, focus groups, comprised of family members who cared for a loved one with a chronic serious illness, were conducted to determine cultural values and preferences within the AA and White communities.…”

“…In Phase 1, focus groups, comprised of family members who cared for a loved one with a chronic serious illness, were conducted to determine cultural values and preferences within the AA and White communities. Thematic analysis of the focus groups became the basis for the study protocol (Elk et al, 2020). In Phase 2, a study team, comprised of community advisory group (CAG) members, researchers, hospital staff members, and a PC physician, was created.…”

Spiritual care practices in hospices in the Western Cape, South Africa: The challenge of diversity

“…The responses of our participants enable us to add to the discussions raised by the few studies in the global South [15,27,28]. The issue of diversity in spiritual care is now being discussed in diversifying countries like, for example, the USA [29,30,31] and in other African contexts (32,33,34]. There are similarities between our ndings and those in other diverse contexts; the particular South African history, though, does create a political context which is probably unique [35].…”

Responding to Healthcare Disparities and Challenges With Access to Care During COVID-19

“…Health Equity just published my article and in it we include a table with information about the differences in approach for how to talk to southern black and white patients. 8 And who determined that? The community members, both black and white.…”