Abstract
Background:
Latinos are the largest minority group in the United States and when compared with non-Latino whites suffer from higher rates of certain chronic diseases. Latino community health workers (promotores de salud) are successful in improving the health of their communities. However, evidence of their effectiveness in increasing awareness of palliative care (PC) is limited.
Objective:
To evaluate the feasibility of applying a promotores de salud model to improve PC awareness among Latinos within the context of chronic disease management.
Methods:
Bilingual promotores from Familias en Acción trained 76 southern California promotores on PC and chronic disease management. Promotores agreed to disseminate the information learned to 10+ Latino community members. The strengths of the curriculum and the community's needs were identified during phone interviews six months post-training.
Results:
In 406 diverse settings, 69 promotores trained 2734 community members. Interviews with promotores at follow-up established four themes: (1) holistic health in chronic disease management; (2) communication with doctors; (3) shared decision making, patients' rights, and control; and (4) need for PC information (awareness, access, and support groups).
Conclusion:
Promotores proved effective at disseminating information related to PC within chronic disease management to Latino community members. Future training should include information on support groups and where caregivers can seek help while caring for those with a terminal disease.
Introduction
Latinos are the largest minority group in the United States 1 and compared with non-Latino whites suffer from higher rates of certain chronic diseases,2–4 and are diagnosed with more advanced cancers. 5 In addition, Latinos may lack culturally sensitive health care services that could lead to lower quality of care. 5 Although palliative care (PC) improves care quality for seriously ill individuals,6,7 research suggests a lack of access to and understanding of PC among Latinos.8–11 When compared with non-Latinos, Latinos are less inclined to participate in advance care planning,12,13 are more likely to have their survival overestimated in advanced cancer, 14 and are less likely to receive hospice care. 10 There is increasing interest in applying public health principles of community engagement to promote awareness of PC. 15 The promotores de salud (community health worker [CHW]) model has successfully improved chronic disease management,16,17 lifestyle behaviors,18,19 and cancer prevention/management.20–22 Promotores deliver information in a culturally sensitive manner and are perceived as having similar values and experiences as their community. 23 Little is known about applying the promotores de salud model to improving PC awareness in the context of chronic disease management.
Methods
Participants and setting
The California State University (CSU) Institute for PC and the CSU Long Beach (CSULB) Center for Latino Community Health, Evaluation and Leadership Training, partnered with Familias en Acción 24 to implement a program to improve PC awareness among promotores and their communities. Eligibility criteria to participate included (1) promotor(a) de salud experience, (2) Spanish-speaking, and (3) ability to share the information with 10 Latino adults. Four workshops occurred over nine months during 2017–2018. Two promotores from Familias en Acción led each eight-hour session in Spanish using Empodérate: Empower Yourself! 24
Curriculum
The Empodérate: Empower Yourself! curriculum addresses six topics: understanding holistic health, defining chronic disease, patient-centered health care, interacting with providers, managing medications, and understanding PC. PC information was provided within the context of chronic disease management and did not focus on end-of-life care. Each promotor/a received ten 12-page booklets, Senderos hacia mi Salud [Pathways to my Health], to share with community members. The booklets track health information (e.g., provider information, medications), and questions to be asked during appointments.
Data collection
University Institutional Review Board approval was obtained. Study flyers were shared electronically through Facebook and sent to promotores de salud networks and health agencies. By telephone, CSULB Center for Latino Health promotores screened potential participants for eligibility. Six months post-training, follow-up telephone interviews assessed the number of community members reached and training locations. Promotores were asked: “What part of the presentation helped people the most?” and “Was there any additional information that participants wanted to know more about?”
Analysis
The open-ended responses were recorded verbatim in Spanish, then translated and transcribed into English. For consensus, transcriptions were reviewed by two bilingual researchers (M.N.B. and I.L.M.). Using a grounded theory approach, 25 two researchers (M.N.B. and J.R.G.) manually coded the transcription in Excel, identified emergent themes, grouped themes into related subcategories, and selected representative quotations. The third researcher (I.L.M.) reviewed the themes and selected representative quotations.
Results
Feasibility and reach
A total of 76 promotores attended the trainings (Table 1) and 69 completed the six-month follow-up interview (90.8% response rate). Curricular information was disseminated in 406 locations, including schools, homes, churches, hospitals, workplaces, and medical clinics. Two thousand seven hundred thirty-four Latino community members received information from Empodérate: Empower Yourself!
Demographics of the Promotores (N = 76)
SD, standard deviation.
Themes
Four main themes emerged from the interviews: (1) holistic health in chronic disease management; (2) communication with doctors; (3) shared decision making, and (4) palliative care. Themes, subthemes, and representative statements are presented in Table 2.
Themes, Subtheme(s), and Representative Statements
Holistic health within chronic disease management
Holistic health within chronic disease was identified as the most helpful aspect of the training. Promotores defined holistic health as physical, psychosocial, and spiritual well-being. “Balance” was another word used to describe the multiple needs participants faced during chronic disease management. In addition, promotores noted how a holistic approach was helpful in all types of life trials, not only during illness.
Communication
Promotores stated the training on communicating with one's doctor was valuable for community members. Preparing for the visit and communicating with the doctor was enhanced by the Senderos booklets that included places to record current medications, future medical appointments, and questions for the provider. The Sendero booklets were described as a key tool “from today forward” empowering them for doctor visits. The community members learned to communicate how their chronic condition was affecting them as well as how to voice “doubts” to their medical providers.
Shared decision making
The importance of shared decision making and patient rights was frequently mentioned by promotores. They reported community members who felt respected were empowered to request information and participate actively in decisions related to their care. A “train activity” revealed to participants that they were in control of their chronic condition. Shared decision making appeared to be new, as some promotores simply stated “patients have rights” as a key takeaway from the training.
Palliative care
Promotores reported a need for greater community awareness of what PC is, how to access it, how it is paid for, and what services are available. The term PC was largely unknown, with training sites requesting a definition before committing to a community event. However, when PC was explained, most sites immediately recognized its importance. Caregivers wanted to know about assistance with specific diseases, caring for those with a terminal disease, support groups, and self-care resources.
Discussion
This study demonstrated the feasibility of a promotores de salud model to reach an urban Latino community with information on PC and chronic disease management. Our findings reflect previous study that promotores are highly effective in educating their communities.19,21–23 Our outreach was enhanced by the collaborative efforts of the CSULB Center for Latino Health, the CSU Institute for PC, and Familias en Acción, which leveraged expertise and optimized limited funding.
During the follow-up phone interviews, promotores described the most helpful aspects of Empodérate: Empower Yourself! as enhancing holistic health within chronic disease management, improving communication with doctors, respecting patient rights/control and shared decision making, and understanding PC. The importance of addressing psychosocial spiritual needs in addition to physical needs (holistic health) is previously reported in the literature.6,26,27 The paradoxical health advantages experienced by Latinos for certain chronic conditions (e.g., cardiovascular disease) 3 may be related to the value they place on holistic health.
Community members greatly benefited from information on how to communicate with their doctors. Improving provider communication is critical as language barriers are common between non-native language individuals and providers, and miscommunications can lower the quality of care.28,29 The Senderos booklet was perceived as an excellent tool to plan, guide, and record communication between the provider and patient. Study outside the Latino population by Johnston et al. identified CHWs as serving as the “hub of the wheel” to facilitate communication between services, providers, and community members. 30
The curriculum's focus on shared decision making was highly valued by participants. Study by Pacheco et al. described malos tratos (poor treatment and disrespect) by providers as interfering with Latinos seeking health care. 31 To enhance the concepts of patients' rights, control, and shared decision making, the workshop included a Familias en Accion-led “train activity” that was a simulation for how patients can take control of their health, life, and decisions.
Finally, promotores identified a need for greater awareness of PC (what it is, how to access it, and what services are provided). Misunderstandings of the term PC are common as both the public and health care professionals frequently mistake PC with end-of-life care. 32 Awareness of PC is important for caregiving Latinos because they are less likely to access supportive services and are more apt to experience significant caregiver burden. 33 Framing PC within chronic disease management reinforced that PC applies across disease trajectories, not only at end of life.
Several limitations are noted. The interviews were not audio-taped presenting a potential for bias. However, two bilingual research assistants received structured training by one researcher (M.N.B.). In addition, interviews identified similar themes. Finally, as our focus was primarily to examine the feasibility of applying a promotores de salud model to improving PC awareness, this research lacked a strong methodology and objective outcomes.
In conclusion, our research suggests that applying a CHW model (promotores de salud) is an efficient cost-effective approach to disseminate information on PC within Latino communities. CHWs, both within and outside the Latino population, bring new ideas to existing neighborhoods where people gather and share information. 23 Training promotores to be an integral part of allied health care may improve PC awareness, provider/patient communication, leading to enhanced respect and shared decision making.
Footnotes
Acknowledgments
The contributions of Ana Romo, Maria Becerra, Olga Gerberg, Pilar Alcantar Trujillo, Jacqueline Garay, Christina Ta, Eldy Martinez, Lorena Martinez, William Lucas, and Lorene Morris are greatly appreciated.
Disclaimer
The views expressed herein are those of the authors and not an official position of the mentioned institutions or funders.
Funding Information
Gary and Mary West Foundation and UniHealth Foundation provided funding.
Author Disclosure Statement
No competing financial interests exist for any author.