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
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
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DOI：
10.1089/heq.2019.0120
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发表时间：
2020-01-01
期刊：
影响因子：
2.7
通讯作者：
Levkoff, Sue
中科院分区：
文献类型：
--
作者：
Elk, Ronit;Emanuel, Linda;Levkoff, Sue
目的：缺乏对文化差异的认识可能会损害对重症少数民族患者的护理，但目前在美国还没有适合文化的姑息治疗模式。患有限制生命的疾病的农村患者不接受PC的风险很高。开发一个考虑农村非裔美国人（AAs）和白色（W）公民文化偏好的PC模型至关重要。本研究的目标是制定和确定实施一个基于文化的PC远程会诊计划的可行性，为农村南部AA和W老年人与严重的疾病和他们的家庭，并评估其可接受性的患者，他们的家庭成员，和clinics.Methods：这是一个三阶段的研究进行了农村博福特，南卡罗来纳州，从2013年1月至2016年2月。我们使用了基于社区的前瞻性研究方法，包括一个由AA和W成员组成的社区咨询小组（CAG）来指导这项研究。第一阶段：文化价值观和偏好是通过以种族为基础的焦点小组确定的，这些小组由过去一年内照顾过去世的亲人的家庭成员（15 W和16 AA）组成。我们对焦点小组的成绩单进行了主题分析，重点是文化价值观和偏好，这是研究方案的基础。第2阶段：方案制定：我们创建了一个由8名CAG成员、2名研究人员、2名医院工作人员和1名PC医生组成的方案团队。PC医生解释了进行PC咨询的标准临床指南，CAG成员为每个主题提出了适合其种族的文化方案建议。所有建议都纳入了一项针对族裔群体的议定书。第3阶段：基于文化的PC协议由PC医生通过远程医疗在当地医院实施。我们招募了年龄≥ 65岁的患者，他们患有限制生命的疾病，由住院医师推荐家庭护理人员接受PC咨询。为了评估方案实施的可行性，包括其对患者、照顾者和医院工作人员的可接受性，我们使用Donebedian的结构-过程-结果模型，使用FAMCARE-2的改编版测量了患者/照顾者对基于文化的咨询的满意度。结果：第一阶段：W和AA之间的主题是（1）等同的：例如，医院医生对患者和家属的不尊重;（2）相似但有差异：例如，虽然宗教和教会对两个族群都很重要，而且两个族群的牧师都帮助家庭面对生命终结的现实，但AA认为教会毫无保留地对生活的各个方面都很重要;（3）分歧，例如，AA坚信希望和奇迹总是一种可能性，上帝是决定者，这是W组中不存在的主题。第二阶段：我们将针对基于文化的PC咨询的特定种族群体建议纳入标准PC咨询中。第3阶段：我们在32例合格患者中的18例中测试了种族特异性PC咨询的可行性和可接受性。远程保健系统运作良好。PC MD实现保真度为98%。大多数病人是非语言的，不能评价满意度的咨询，但照顾者满意或非常满意。医院领导支持计划的实施，但住院医生只提到了18个28个符合条件的patients.Conclusions：在美国的第一个文化为基础的PC咨询程序开发的合作伙伴关系与AA和W南部农村社区成员。该方案在农村小医院实施是可行的，但住院医师转诊率低是主要障碍。该计划的有效性目前正在与医院合作，在三个南部农村州进行随机临床试验。这一方法可以作为一种模式，在其他环境和其他族裔群体中推广和调整。
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 W group. Phase 2: We incorporated ethnic group-specific recommendations for the culturally based PC consult into the standard PC consult. Phase 3: We tested feasibility and acceptability of the ethnically specific PC consult on 18 of 32 eligible patients. The telehealth system worked well. PC MD implementation fidelity was 98%. Most patients were non-verbal and could not rate satisfaction with consult; however, caregivers were satisfied or very satisfied. Hospital leadership supported program implementation, but hospitalists only referred 18 out of 28 eligible patients.Conclusions: The first culturally based PC consult program in the United States was developed in partnership with AA and W Southern rural community members. This program was feasible to implement in a small rural hospital but low referral by hospitalists was the major obstacle. Program effectiveness is currently being tested in a randomized clinical trial in three southern, rural states in partnership with hospitalists. This method can serve as a model that can be replicated and adapted to other settings and with other ethnic groups.