RESUMEN
Racial disparities in hospice use are a longstanding concern in the U.S. Asian Americans are among the least likely to receive hospice care and to be included in studies on this topic. This study examined the knowledge, attitudes, and preferences related to hospice care among older Chinese immigrants and associated factors. A sample of 262 Chinese immigrants age 60+ was recruited from six older adult centers in NYC. In-person interviews were conducted in Mandarin and Cantonese. Non-English-speaking older Chinese immigrants had very limited knowledge about hospice care. Only 26% of respondents had heard of hospice, and a few could correctly define any components. After receiving a comprehensive definition of hospice care, study participants expressed a positive attitude and a strong willingness to use hospice if near the end of life. Notably, some respondents still held misconceptions about hospice and were less positive in their attitude and preference for hospice care. These findings underscore the necessity for clear and accessible information about hospice among this population throughout the trajectory from good health to end of life. Further research is needed to identify the range of factors that influence the attitudes and preferences of older Chinese immigrants toward hospice care.
Asunto(s)
Asiático , Emigrantes e Inmigrantes , Conocimientos, Actitudes y Práctica en Salud , Cuidados Paliativos al Final de la Vida , Humanos , Femenino , Masculino , Anciano , Emigrantes e Inmigrantes/psicología , Emigrantes e Inmigrantes/estadística & datos numéricos , Cuidados Paliativos al Final de la Vida/psicología , Conocimientos, Actitudes y Práctica en Salud/etnología , Asiático/psicología , Asiático/estadística & datos numéricos , Persona de Mediana Edad , Estados Unidos , Anciano de 80 o más Años , China/etnología , Prioridad del Paciente/etnología , Factores Socioeconómicos , Entrevistas como Asunto , Ciudad de Nueva York , Pueblos del Este de AsiaRESUMEN
BACKGROUND: Previous research has found racial differences in hospice knowledge and misconceptions about hospice care, which may hinder access to hospice care. Asian Indians are a rapidly growing population in the United States, yet limited research has focused on their beliefs toward end-of-life care. This project investigates Indian Americans' knowledge of and attitudes toward hospice care and advance care planning. PROCEDURES: A cross-sectional design was employed using surveys about participants' knowledge of and attitudes toward hospice care and advance care planning. Surveys were conducted among Indian Americans, age 60 and over, recruited from Indian cultural centers in Northern California. The participants were first asked questions about hospice care. They were then given a summary explanation of hospice care and later asked about their attitudes toward hospice care. Data were analyzed using descriptive and bivariate analyses. RESULTS: Surveys were completed by 82 participants. Findings revealed that 42.5% of respondents had an advance directive and 57.1% had named a health care proxy. Only 10% of respondents had known someone on hospice care and 10.4% correctly answered 4-5 of the knowledge questions. After being informed about hospice care, 69.6% of participants agreed that if a family member was extremely ill, they would consider enrolling him/her in hospice. CONCLUSIONS: This study's results present a need for greater education about hospice services among older Asian Indians. Health practitioners should remain cognizant of potential misconceptions of hospice and cultural barriers that Asian Indians may have toward hospice care, so they can tailor conversations accordingly.
Asunto(s)
Cuidados Paliativos al Final de la Vida , Directivas Anticipadas , Asiático , Actitud , Estudios Transversales , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Masculino , Persona de Mediana Edad , Estados UnidosRESUMEN
BACKGROUND: Patients with advanced cancer and their caregivers have substantial misperceptions regarding hospice, which contributes to its underuse. METHODS: The authors conducted a single-site randomized trial of a video educational tool versus a verbal description of hospice in 150 hospitalized patients with advanced cancer and their caregivers. Patients without a caregiver were eligible. Intervention participants (75 patients and 18 caregivers) viewed a 6-minute video depicting hospice. Control participants (75 patients and 26 caregivers) received a verbal description identical to the video narrative. The primary outcome was patient preference for hospice. Secondary outcomes included patient and/or caregiver knowledge and perceptions of hospice, and hospice use. RESULTS: Between February 2017 and January 2019, approximately 55.7% of eligible patients (150 of 269 eligible patients) and 44 caregivers were enrolled. After the intervention, there was no difference noted with regard to patients' preferences for hospice (86.7% vs 82.7%; P = .651). Patients in the video group reported greater knowledge regarding hospice (9.0 vs 8.4; P = .049) and were less likely to endorse that hospice is only about death (6.7% vs 21.6%; P = .010). Among deceased patients, those assigned to the intervention were more likely to have used hospice (85.2% vs 63.6%; P = .01) and to have had a longer hospice length of stay (median, 12 days vs 3 days; P < .001). After the intervention, caregivers assigned to view the video were more likely to prefer hospice for their loved ones (94.4% vs 65.4%; P = .031), reported greater knowledge concerning hospice (9.7% vs 8.0%; P = .001), and were less likely to endorse that hospice is only about death (0.0% vs 23.1%; P = .066). CONCLUSIONS: A hospice video did not significantly impact patients' preferences for hospice care. Patients with advanced cancer and their caregivers who were assigned to view the video were more informed regarding hospice and reported more favorable perceptions of hospice. Patients were more likely to use hospice and to have a longer hospice length of stay.
Asunto(s)
Cuidadores/psicología , Cuidados Paliativos al Final de la Vida , Neoplasias/terapia , Cuidado Terminal , Adulto , Anciano , Cuidadores/educación , Hospitales para Enfermos Terminales , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/psicología , Prioridad del PacienteRESUMEN
The nation faces a persistent issue of delayed access to hospice care. Even though hospice enrollment is considered to be one of the most difficult medical decisions, physician clinics and hospitals lack tools for helping patients/families faced with making decisions about enrollment. Health-care literature lacks discussion of development of decision-making aids in the context of hospice decisions for minority ethnic groups, even though those groups have decisional needs that may differ from those of non-Hispanic whites. To fill the gap, we developed a video of a Latino hospice patient with footages showing how the patient was being taken care of by her family with support from a hospice disciplinary team. A primary objective of this article is to describe how focus groups, existing decision aids, and individual interviews were used to develop and improve a Spanish-language hospice educational video targeting Latino subgroups with linguistic, cultural, and educational barriers. These steps may provide guidelines for developing and revising health-related videos targeting other minority ethnic groups.
Asunto(s)
Educación en Salud/métodos , Hispánicos o Latinos , Cuidados Paliativos al Final de la Vida/organización & administración , Lenguaje , Grabación de Cinta de Video , Competencia Cultural , Técnicas de Apoyo para la Decisión , Grupos Focales , Cuidados Paliativos al Final de la Vida/psicología , Humanos , Desarrollo de Programa , Investigación CualitativaRESUMEN
CONTEXT: Poor knowledge and misperceptions about hospice are believed to be common, but there is scant evidence about the public's understanding of hospice. OBJECTIVES: To examine hospice knowledge among geographically diverse adults; and describe linkages between knowledge, attitudes and beliefs about hospice care, and demographics. METHODS: A small cross-sectional telephone survey of adults living in the contiguous US was conducted using randomly selected numbers (cell phone and landline) and over-sampling of minorities. Measures assessed knowledge (23-item test), attitudes (8-item scale), experiences and preferences related to hospice. RESULTS: 123 participants completed surveys (response rate 46%). 106 (86%) had heard about hospice, 65 (54%) of whom had a personal experience with hospice. Participants had an average hospice knowledge test score of 18 (SD = 3.4) indicating moderate knowledge of hospice. A majority of respondents (62%) did not know that hospice cannot provide concurrent cure-oriented care. Misperceptions about eligibility, coverage of hospice, the provision of hospice in nursing homes or to persons who live alone were not uncommon (missed by >20%). Greater knowledge of hospice was associated with more favorable attitudes about the hospice philosophy of care (r = .22, p = .023) and a greater preference for hospice (p = .049). Respondents who were more educated, worked in the medical field, were non-Hispanic White, and had direct experience with hospice were also more likely to be more knowledgeable about hospice. CONCLUSION: Despite relatively high hospice awareness and favorability, myths and misperceptions about hospice still abound--and may drive ethnic disparities in end-of-life care. Educational interventions and future study are needed.
Asunto(s)
Conocimientos, Actitudes y Práctica en Salud , Cuidados Paliativos al Final de la Vida/psicología , Cuidados Paliativos/psicología , Prioridad del Paciente , Adulto , Actitud Frente a la Muerte , Estudios Transversales , Femenino , Encuestas Epidemiológicas , Humanos , Masculino , Manejo del Dolor , Estados UnidosRESUMEN
CONTEXT: Among Hispanics, incomplete knowledge about hospice care may explain low rates of utilization and culturally-specific beliefs about pain and pain treatments may contribute to disparities in pain management. OBJECTIVES: To compare (1) knowledge and attitudes regarding hospice, (2) and beliefs about pain and pain medication between Hispanics and non-Hispanics. METHODS: A cross-sectional phone-based survey of adults living in the contiguous United States was conducted using randomly selected phone numbers with over-sampling for diversity. Measures assessed knowledge (a 23-item test), attitudes (an 8-item scale), experiences, preferences related to hospice and beliefs regarding pain and pain management. RESULTS: 123 individuals participated in the survey, 13% of whom were Hispanic. Hispanics were less likely to have heard of hospice are (p <. 001) and, among those who had, more likely to have inaccurate information about it (p = .05). Specifically, Hispanics were more likely to report that only individuals over age 65 are eligible for hospice services, which is incorrect (44% vs. 93% of non-Hispanics; p=.001). Only 67% of Hispanics knew that hospice helps family members as well as the dying person. More Hispanics (43%) than non-Hispanics (9.3%) reported that admitting pain is a sign of weakness (p < .001). A greater proportion of Hispanic respondents agreed that a good patient does not talk about pain (p = .07): 38% vs. 18% from non-Hispanics. CONCLUSION: Despite the increasing knowledge of hospice care among Hispanics, specific information about the scope of services remains limited. Cultural beliefs about pain management, along with inadequate knowledge of the role of pain management at end of life, persist.