Iraida V. Carrion

Knowledge About Hospice Exploring Misconceptions, Attitudes, and Preferences for Care

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.

Communicating terminal diagnoses to Hispanic patients

OBJECTIVE This study addressed factors physicians employ in their communication of a terminal diagnosis and a hospice referral to Hispanic patients. METHOD The research method used was an exploratory qualitative in-depth semi-structured interview with thematic analysis. The interviews were with ten physicians in Central Florida. The interviews were conducted in Spanish and/or English with physicians who serve terminally ill Hispanic patients. RESULTS The findings provide vital information on factors that impact communication of diagnosis and hospice referral. Themes emerged relating to role of family members and end-of-life decision-making. Language barriers and limited knowledge of cultural factors and beliefs impacted communication related to end-of-life decisions. Gaps in training and education for physicians were also identified. SIGNIFICANCE OF RESULTS These results suggest that discussing end-of-life issues with the diverse category of Hispanic patients and families will be enhanced by eliminating language barriers, increased understanding of the role of family members, and knowledge of cultural factors and beliefs related to end-of-life decisions.

Navigating the advanced cancer experience of underserved Latinas

ObjectivePrevious cancer research does not adequately inform us about the experiences of managing a more serious, life-threatening cancer condition, especially for underserved Latinas. This study was designed to explore the ways in which Latinas navigate through and deal with advanced cancers.MethodsA purposive sample of 24 underserved Latina women was selected from a randomized controlled trial. Data were analyzed using a phenomenological approach to explore navigation of the advanced cancer experience.ResultsThis study outlines a conceptual framework which denotes the interconnectedness of multiple factors that influence the cancer experience for Latina women. Experiences with advanced cancer were embedded within a social, cultural, and systemic framework described as 1) intrapersonal experiences; 2) interpersonal experiences; 3) provider interactions; and 4) medical system factors.ConclusionsThis study indicates that underserved Latinas face complex circumstances that interfere with the diagnosis and treatment of cancer. However, women expressed positive attitudes and held beliefs about survival which helped them through their experience with cancer. The implication of these findings is that Latinas have protective attitudes and beliefs that help them to overcome “tragic” circumstances. Providers need to become aware of the complexity of these issues in order to achieve competent, effective, and efficient practice in medical settings with Latinas.

Hospice Use Among African Americans, Asians, Hispanics, and Whites: Implications for Practice

Objective: This study examined the characteristics of individuals in hospice care by racial/ethnic groups. Methods: A total of 22,936 patients served by a hospice in Central Florida during a four-year period, from 2002 to 2006, were included. Of these, 80.6% were White, 9.6% were Black/African-American, 9.3% were Hispanic and 0.5% were Asian American/Pacific Islander. We examined the associations between the characteristics of hospice users and race/ethnicity, and change of hospice user characteristics over time using chi-square and ANOVA tests. Results: More females than males were represented. Spouse caregivers were most common for Whites (35%) and Asian/Pacific Islanders (36%). However, “other” (41%) caregivers were most frequent for African Americans and daughters (33%) were most often caregivers for Hispanics. Cancer was the primary diagnosis across the four groups. Racial/ethnic minorities were more likely to rely on Medicaid than Whites (10-70% vs. 4%) and African Americans were most likely to be transferred from hospital (57%), whereas Whites were referred from assisted living/nursing homes more frequently than others(16% vs. 7-10%). Conclusion: As the hospice settings become more racially/ethnically diverse, it is essential to attend to the different circumstances and needs of the various groups in providing optimal care.

Knowledge About Hospice Care and Beliefs About Pain Management: Exploring Differences Between Hispanics and Non-Hispanics

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.

Caregiving for older Latinos at end of life: perspectives from paid and family (unpaid) caregivers.

This study examined the various settings in which caregiving occurred for terminally ill older Latinos. Qualitative data were collected in Central Florida through in-depth, semi-structured, open-ended interviews. 20 Latinos caring for terminally ill Latinos participated in the study. N = 9 Latino family (unpaid) caregivers provided care in the terminally ill persons home, while N = 4 provided care to a family member in the caregivers home. N = 4 paid caregivers provided care to terminally ill Latinos who reside in the caregivers private home and N = 3 in an assisted-living facility. The themes indicate that family (unpaid) caregivers experienced changes in their financial status; they both encountered English language barriers. Geographical distance made caregiving more challenging. Paid caregivers adapted to cultural expectations and their higher income enabled them to hire assistance.

More Similar than Different? Exploring Cultural Models of Depression among Latino Immigrants in Florida

The Surgeon Generals report, “Culture, Race, and Ethnicity: A Supplement to Mental Health,” points to the need for subgroup specific mental health research that explores the cultural variation and heterogeneity of the Latino population. Guided by cognitive anthropological theories of culture, we utilized ethnographic interviewing techniques to explore cultural models of depression among foreign-born Mexican (n = 30), Cuban (n = 30), Columbian (n = 30), and island-born Puerto Ricans (n = 30), who represent the largest Latino groups in Florida. Results indicate that Colombian, Cuban, Mexican, and Puerto Rican immigrants showed strong intragroup consensus in their models of depression causality, symptoms, and treatment. We found more agreement than disagreement among all four groups regarding core descriptions of depression, which was largely unexpected but can potentially be explained by their common immigrant experiences. Findings expand our understanding about Latino subgroup similarities and differences in their conceptualization of depression and can be used to inform the adaptation of culturally relevant interventions in order to better serve Latino immigrant communities.

Exploring Health Care Providers’ Views About Initiating End-of-Life Care Communication:

Numerous factors impede effective and timely end-of-life (EOL) care communication. These factors include delays in communication until patients are seriously ill and/or close to death. Gaps in patient–provider communication negatively affect advance care planning and limit referrals to palliative and hospice care. Confusion about the roles of various health care providers also limits communication, especially when providers do not coordinate care with other health care providers in various disciplines. Although providers receive education regarding EOL communication and care coordination, little is known about the roles of all health care providers, including nonphysician support staff working with physicians to discuss the possibility of dying and help patients prepare for death. This study explores the perspectives of physicians, nurses, social workers, and chaplains on engaging seriously ill patients and families in EOL care communication. Qualitative data were from 79 (medical and nonmedical) providers practicing at 2 medical centers in Central Los Angeles. Three themes that describe providers’ perceptions of their roles and responsibility in talking with seriously ill patients emerged: (1) providers’ roles for engaging in EOL discussions, (2) responsibility of physicians for initiating and leading discussions, and (3) need for team co-management patient care. Providers highlighted the importance of beginning discussions early by having physicians lead them, specifically due to their medical training and need to clarify medical information regarding patients’ prognosis. Although physicians are a vital part of leading EOL communication, and are at the center of communication of medical information, an interdisciplinary approach that involves nurses, social workers, and chaplains could significantly improve patient care.

Assessing Challenges in End-of-Life Conversations With Patients Utilizing a Public Safety-Net Health Care System:

Multiple factors influence end-of-life (EOL) care discussions that occur in health care systems, within organizations, among individuals working within these systems and in patients and family/friend support networks. This study examined barriers to EOL care discussions as experienced by health care providers working in a public safety-net health care system where the majority of their patients were low-income and immigrant Latinos seeking medical treatment. Qualitative data were collected in South Central Los Angeles through semistructured interviews with 46 health care providers from different disciplines in medicine, nursing, social work, and chaplaincy. The themes indicated communication barriers in the public sector health care setting and sociocultural patient- and family-level factors. All providers made valuable contributions to clarify the complexity of the problems. Universal strategies are needed to improve communication.

“I Told Myself to Stay Positive” Perceptions of Coping Among Latinos With a Cancer Diagnosis Living in the United States

Purpose: This study contributes to the sparse body of literature examining perceptions of coping among Latino men and women with a cancer diagnosis living in the United States. There are currently 50 million Latinos in the United States and, by 2050, projected to grow to 128 million. Although some research indicates that Latinos have unique sociocultural beliefs that influence their cancer care, very little is known about their perceptions of coping after being diagnosed with cancer. We examined Latino men and women’s perceptions of coping to understand the meaning of their experience with cancer Method: Using criterion sampling technique, 60 immigrant and migrant Latino men and women diagnosed with cancer within the past 5 years were recruited from community-based organizations, clinics, and churches. The study consisted of 60- to 90-minute semistructured interviews asking open-ended questions pertaining to coping. The qualitative design facilitated an understanding of coping within the participants’ social and cultural contexts. Results: Median age of the participants was 55 years. Among the women, 80% had breast cancer; 12% had ovarian cancer; and 8% had throat, thyroid, stomach, or skin cancers. Among the men, 94% had prostate cancer and 6% had brain, colorectal, or lung cancers. Emerging themes associated with the development of coping strategies involved positive reframing, family support, religion and spirituality, and support from health care providers. The term “positive reframing” relates to finding meaning and positive emotions that help sustain the coping process, despite having a cancer diagnosis. In addition, when medical and helping professionals provided tangible support, participants engaged in meaning-based coping. Conclusion: This study provides insights regarding the existing coping strategies which Latinos utilize and provides clinician-tangible information pertaining to participant’s engagement in meaning-based coping. Family support facilitated coping among the Latino men and women. The role of religion and spirituality in the lives of the participants enabled them to cope with the cancer diagnosis. Future research is necessary to examine coping strategies regarding specific cancers at end of life.