RESUMEN

OBJECTIVES: The study explores medical social workers' perceptions on the importance of and purpose for documenting Advance Directives (ADs) in the United States and their views of the benefits for engaging patients and families in dialogue about ADs and Advance Care Planning (ACP). METHODS: We conducted a qualitative study using free-text responses from a survey of 142 social workers who work in the medical field in various in-patient hospital and out-patient medical/healthcare settings. Participants were asked, "What is the purpose of documenting an advance directive?" and "Why do you think advance directives are important?" and "What benefits have you experienced in educating patients about advance directives?" Thematic analysis informed themes about the purpose, importance, and benefits of supporting patients in completing an AD. RESULTS: Four themes emerged: 1) The purpose of documenting an AD, 2) Facilitating communication, 3) Creating a plan involves relationship building, and 4) Having an AD reduces suffering and uncertainty. CONCLUSION: Social workers have expertise in relationship building which is an essential element of the partnering process with patients and their support systems towards AD completion. PRACTICE IMPLICATIONS: Social workers who work in medical settings provide ACP education for patients and families and create interprofessional linkages to support patient care. It is clear that social workers add value to care provision to improve communication and provide assistance towards AD completion.

Asunto(s)

RESUMEN

Social workers have a critical role on medical teams for facilitating effective conversations about advance care planning (ACP) in palliative and end-of-life care. Engaging patients in such conversations may be influenced by clinicians' attitudes. During the COVID19 pandemic, the need to examine barriers to serious illness care across healthcare settings and areas of specialty practice became abundantly clear. This study examines: (1) social workers' attitudes about ACP and (2) factors that influence the completion of advance directives (ADs). Using a cross-sectional study design, we surveyed 142 social workers on their knowledge, attitudes, and behaviors related to ADs. Using exploratory factor analyses, we identified 2 provider practice attitudes factors, 3 perceived barriers factors, and 2 perceived importance of AD factors. We then used logistic regression to estimate odds ratios (ORs) and 95% confidence intervals (CIs) for each of the factors in association with the frequency social workers reported educating patients about ADs. While various positive and negative attitudes and barriers toward educating patients are important factors to consider, social workers' perceptions of the importance of engaging patients in ACP education was the most important factor that influenced their behaviors. The odds of always/often (vs. sometimes/rarely/never) educating patients about ADs in their practice were greater for those social workers who reported they see the importance of AD decision-making (OR = 3.21, 95%CI = 1.83-5.62) and confirming goals-of-care (OR = 1.76, 95%CI = 1.03-3.01). Social worker's ACP knowledge and skills for educating patients are important in initiating conversations prior to a health crisis, especially important for developing a comprehensive care plan.

Asunto(s)

RESUMEN

BACKGROUND: Cancer risk increases with age. Despite breast cancer screening guidelines, older minorities are less likely to obtain screenings. Many factors influence cancer screening participation, though the literature rarely examines factors influencing cancer screening in older adult minority populations. METHODS: Using 2008 and 2012 waves of data from the Health and Retirement study, we examined and compared the relationships between psychosocial factors and breast screening participation among older African American, Hispanic and non-Hispanic White women. We utilized logistic regression to determine the influence of psychosocial factors (satisfaction with aging, religiosity, perceived control, emotions, purpose in life) in 2008 predicting breast cancer screening participation in 2012, given the increasing importance of understanding health behaviors as predicted by prior circumstances. While controlling for other variables, the major findings demonstrated that the odds of having a mammogram among Hispanics decreased as feelings that 'things were getting worse' with age intensified; and screening was more likely among Hispanic religious women. The odds of obtaining a mammogram increased with increasing purpose in life for Hispanics. CONCLUSIONS AND IMPLICATIONS: These findings suggest the need for comprehensive geriatric assessments to understand the perspectives of older minority women, and provides formative data to inform shared decision-making interventions.

Asunto(s)

RESUMEN

BACKGROUND: We examined the associations between dual impairments in visual and hearing acuity and aging-related cognitive decline. METHODS: This was a longitudinal study of adults who had visual and hearing acuity and cognitive function assessed in 1992-1996 and were followed for up to 24 years (mean = 7.3 years), with up to five additional cognitive assessments. Visual impairment was defined as vision worse than 20/40, hearing impairment as pure-tone average thresholds >25 dB. Associations were tested using linear mixed-effects regressions. RESULTS: Of 1,383 participants, 293 had visual impairment, 990 had a hearing impairment and 251 had both deficits. In fully adjusted models, low visual acuity was associated with poorer Mini-Mental State Examination (MMSE; ß = -0.29) and Trail-Making Test Part B (Trails B; ß = 13.22) performance, and with faster declines in MMSE (ß = -0.12) and Trails B (ß = 1.84). The combination of low visual and low hearing acuity was associated with poorer MMSE (ß = -0.44) and Trails B (ß = 11.20) scores, and with faster declines in MMSE (ß = -0.19), Trails B (ß = 3.50), and Verbal Fluency Test (VFT; ß = -0.14) performance. Associations were similar in men and women. CONCLUSION: Impairments in both vision and hearing are associated with a more rapid decline in cognitive function with aging.

Asunto(s)

RESUMEN

BACKGROUND: Financial hardship influences health-related quality of life (HRQoL) of older adults. However, little is known about the relationship between financial hardship and HRQoL among vulnerable populations. OBJECTIVE: We examined the associations between financial hardship and HRQoL among older Latinos living with chronic disease, including cancer. METHODS: This cross-sectional study included 68 Latinos (age range 50-87) with one or more chronic health conditions who participated in a pilot randomized clinical trial. Participants responded to 11 financial hardship questions. We used factor analysis to explore constructs of financial hardship. HRQoL was assessed using the 27-item Functional Assessment of Cancer Therapy-General (FACT-G). Multiple linear regression examined the associations between financial hardship and HRQoL subscales (physical, social/family, emotional, functional well-being). RESULTS: The factor analysis revealed 3 constructs of financial hardship: medical cost concerns, financial hardship treatment adherence, and financial worry. A 1-point increase in the factor score for financial hardship treatment adherence was associated with a 2.1-point (SE = 0.771) decrease in physical well-being and with a 1.71-point (SE = 0.761) decrease in functional well-being. A 1-point increase in the financial stress factor score was associated with a 2.0-point (SE = 0.833) decrease in social/family well-being, and with a 2.1-point (SE = 0.822) decrease in functional well-being. CONCLUSION: In this study of older Latinos with chronic diseases, financial hardship was associated with worse HRQoL across several domains. Healthcare providers should refer older Latinos living with chronic disease to appropriate support providers, such as care coordinators, social workers, or patient navigators, who can assist them with obtaining financial assistance and other resources.

Asunto(s)

RESUMEN

BACKGROUND: Early identification of psychosocial distress is important to address the needs of vulnerable populations and influence symptom management. Older veterans diagnosed with life-limiting cancers are particularly vulnerable because they often have unmet needs, experiencing psychological or emotional problems and gaps in healthcare communication, which extends suffering. Lack of emotional support, ongoing physical pain, and unresolved symptom control can further increase distress among older veterans, contributing to complexity of decision-making for end of life (EOL) care. OBJECTIVE: We explored older veterans' experiences and identification of psychosocial distress in cancer care to better understand how they describe distress while facing the end of life. METHODS: Guiding this study is a conceptual framework from psychosocial oncology with the multifactorial experience of distress indicated by NCCN guidelines for distress screening. We use a phenomenological approach to explore the experience of psychosocial distress among older veterans diagnosed with advanced cancers at risk for dying within a year. INCLUSION CRITERIA: Provider response of "no" to, "Would you be surprised if your patient died within a year?" and "yes", to the question, "Have you talked with your patient about the severity of their illness as being life-limiting, terminal?" RESULTS: Five themes emerged: (1) the meaning of distress: "It's hard to explain"; (2) severity of advanced cancer: "There's no stage five"; (3) distressing thoughts about the possibility of dying: "Either way, it's life limiting"; (4) coping: "Deal with it and hope for a better day"; and (5) personal factors: "I don't want to be anything but a man who can handle adversity." Findings suggest older veterans may have unique cancer experiences different from other populations. CONCLUSION: Older veterans in this study exhibited distressing symptoms which demonstrate they are at risk for declining health and in need of support for their distress. Healthcare providers are urged to understand the complexity of distress to provide the best possible treatment for older veterans.

Asunto(s)

RESUMEN

BACKGROUND: End-of-life (EOL) care for Latinos with chronic illness is a critically important problem. Latinos with chronic illness suffer worse health outcomes and poorer quality of care due to various issues occurring in care delivery systems. Latinos are less likely than non-Hispanic whites to prepare an advance directive (AD) for health-care decision-making that impacts treatment decisions for when EOL is near. Advance care planning (ACP) interventions tailored specifically for Latinos have rarely been implemented. OBJECTIVE: The primary aim examines whether a motivational interviewing (MI) intervention increased rates of AD documentation among older Latinos. The secondary aim was to examine whether MI improved communication with providers and family members. METHODS: We pilot tested a randomized controlled trial with older Latinos >50 years with one or more chronic illnesses, including cancer. Participants were randomly assigned to usual care (UC) receiving ACP education alone versus treatment (TX), which received ACP education, plus MI counseling including interactive decisional support, emotional support, and barrier navigation. RESULTS: Results of logistic regression indicate TX group participants were significantly more likely to document an AD than UC, however were less ready to talk with health-care providers or family members. Those reporting navigational barriers for talking about dying is difficult showed a significant negative relationship for AD completion even with significant intervention effects. CONCLUSION: When using MI to motivate individuals toward ACP EOL conversations other factors are important to consider. Further research is needed, especially among Latinos to understand best practices for ACP education and counseling for EOL care.

Asunto(s)

RESUMEN

BACKGROUND:: Advance care planning for end-of-life care emerged in the mid-1970's to address the need for tools, such as the advance directive (AD) legal document, to guide medical decision-making among seriously ill patients, their families, and healthcare providers. OBJECTIVE:: Study aims examine providers' perspectives on AD education that involve examining (1) a range of attitudes about educating patients, (2) whether prior knowledge was associated with practice behaviors in educating patients, and (3) specific factors among healthcare providers such as characteristics of work setting, knowledge, attitudes, and behaviors that may influence AD education and documentation. DESIGN:: To examine providers' views, we conducted a cross-sectional, online survey questionnaire of healthcare providers using social media outreach methods for recruitment. METHODS:: This study used a cross-sectional survey design to examine the proposed aims. Healthcare providers, recruited through a broad approach using snowball methods, were invited to participate in an online survey. Logistic regression analyses were used to examine providers' views toward AD education. RESULTS:: Of 520 participants, findings indicate that most healthcare providers said that they were knowledgeable about AD education. They also viewed providing education as beneficial to their practice. These findings suggest that having a positive attitude toward AD education and experiencing less organizational barriers indicate a higher likelihood that providers will educate patients regarding ADs. CONCLUSION:: Various disciplines are represented in this study, which indicates that attitudes and knowledge influence AD discussions. The importance of AD discussions initiated by healthcare providers is critical to providing optimal patient-centered care.

Asunto(s)

RESUMEN

Advance care planning (ACP) does not readily occur in medical settings and often gets missed. Older Latinos need ACP information to encourage advance directive (AD) completion indicating preferences for end-of-life (EOL) care. OBJECTIVE: To explore the experiences with counseling using motivational interviewing (MI) techniques and social workers to encourage ACP communication among older Latinos with advance chronic diseases. This study describes stages of readiness to plan for EOL care. DESIGN: We conducted a qualitative study with older Latinos who participated in a community-based intervention in Southern New Mexico. METHODS: Participants in the intervention were selected because they received ACP education plus counseling involving MI to address resistance to ACP. Motivational interviewing counseling involved the following: (1) engaging in structured dialogue about ACP, (2) using and completing AD documentation, (3) encouraging ACP communication with providers and families, and (4) applying AD information into actionable behavior. We utilized a constant comparative method and thematic analysis to explore the meaning of older Latinos' experiences with MI counseling and stages of change. RESULTS: Participants (n = 32) were mostly women (74.3%), half born in the United States and half from Mexico in the United States on average for 31.75 (standard deviation 16.22) years. Many had less than sixth grade education (31.3%) or had not completed high school (21.9%). Key themes indicate the following stages of change: (1) precontemplation, (2) contemplation, (3) preparation, (4) ACP action, and (5) maintenance. CONCLUSION: This study contributes to the literature by identifying areas for adaption to enhance understanding and increase information to ultimately achieve the completion of ACP among Latinos.

Asunto(s)

RESUMEN

PURPOSE: There is a paucity of information regarding health related quality of life (HRQoL) of young adults (YAs) with cancer and caregivers. Therefore, we characterize YA and caregiver perspectives on the impact of cancer and its treatment on HRQoL. METHODS: We conducted descriptive qualitative in-depth, semi-structured interviews with YAs receiving cancer care at an academic health center in Albuquerque, New Mexico (USA) and primary informal caregivers. The interviews, conducted from September through December 2015, focused on perspectives on the impact of the disease and its treatment in terms of physical and emotional effects, coping, and strategies to enhance HRQoL. We used an iterative thematic analysis approach to identify emergent themes and create a coding structure. RESULTS: We reached thematic saturation after interviewing 8 YAs and 8 caregivers. YAs and caregivers discussed cancer triggered challenges such as anxiety, depression, isolation, fear, and financial hardships. YAs and caregivers coped by maintaining positive perspectives, relying on friends and family, and prayer. Caregivers discussed how expectations for and experiences of a "good day" changed depending on their loved ones' stage of cancer treatment. YAs navigated challenges by focusing on activities and thoughts that provided meaning to their lives. YAs and caregivers suggested strategies to enhance HRQoL through patient/provider communication, support services, and decision making tools as potential mechanisms for grounding patient-centered interventions to improve cancer care. CONCLUSIONS: Implications include the development and evaluation of informational and behavioral interventions tailored and targeted to address the pragmatic needs of YAs undergoing cancer treatment and informal caregivers.

Asunto(s)

RESUMEN

Latinos/as, the fastest-growing ethnic group in the United States, experience high cancer rates. Factors contributing to treatment decisions among Latinos diagnosed with cancer must be studied. This paper aims to identify treatment decisions among Latinos with cancer and examine factors influencing these decisions. A qualitative exploratory study using semi-structured interviews of 60 Latino/as diagnosed with cancer was conducted. Close-ended responses were analyzed using percentages and frequency distributions, while open-ended responses were analyzed using open coding and thematic categorization. Surgery was the most commonly chosen treatment among participants because it was perceived as providing the highest chance of prolonging life. Only 57% of participants were provided with treatment options. Latinos/as typically prefer modest, paternalistic patient-physician relationships. Therefore, providing culturally appropriate information is valuable. This study underscores the need for health providers to present all available treatment options to enhance cancer treatment outcomes.

Asunto(s)

RESUMEN

BACKGROUND: Older Latinos with serious medical conditions such as cancer and other chronic diseases lack information about advance care planning (ACP). ACP Intervention (ACP-I Plan) was designed for informational and communication needs of older Latinos to improve communication and advance directives (ADs). OBJECTIVE: To determine the feasibility of implementing ACP-I Plan among seriously ill, older Latinos (≥50 years) in Southern New Mexico with one or more chronic diseases (e.g., cancer, heart disease, renal/liver failure, stroke, hypertension, diabetes, chronic obstructive pulmonary disease, and HIV/AIDS). DESIGN: We conducted a prospective, pretest/post-test, two-group, randomized, community-based pilot trial by using mixed data collection methods. SETTING/SUBJECTS: Older Latino/Hispanic participants were recruited from community-based settings in Southern New Mexico. METHODS: All participants received ACP education, whereas the intervention group added: (1) emotional support addressing psychological distress; and (2) systems navigation for resource access, all of which included interactive ACP treatment decisional support and involved motivational interview (MI) methods. Purposive sampling was guided by a sociocultural framework to recruit Latino participants from community-based settings in Southern New Mexico. Feasibility of sample recruitment, implementation, and retention was assessed by examining the following: recruitment strategies, trial enrollment, retention rates, duration of MI counseling, type of visit (home vs. telephone), and satisfaction with the program. RESULTS: We contacted 104 patients, enrolled 74 randomized to usual care 39 (UC) and treatment 35 (TX) groups. Six dropped out before the post-test survey, three from TX before the post-test survey because of sickness (n = 1) or could not be located (n = 2), and the same happened for UC. Completion rates were 91.4% UC and 92.3% TX groups. All participants were Latino/Hispanic, born in the United States (48%) or Mexico (51.4%) on average in the United States for 25 years; majority were female, 76.5%; 48.6% preferred Spanish; and 31.4% had less than sixth-grade education. Qualitative data indicate satisfaction with the ACP-I Plan intervention. CONCLUSIONS: Based on enrollment and intervention completion rates, time to completion tests, and feedback from qualitative post-study, follow-up interviews, the ACP-I Plan was demonstrated to be feasible and perceived as extremely helpful.

Asunto(s)

RESUMEN

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.

Asunto(s)

Asunto(s)

RESUMEN

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.

Asunto(s)

RESUMEN

ABSTRACT Background: Caregivers report early disturbances in social behavior among patients with behavioral variant frontotemporal dementia (bvFTD); however, there are few direct observational studies of these social behavioral disturbances. This study aimed to identify social behavioral themes in bvFTD by direct observation in naturalistic interactions. The identification of these themes can help caregivers and clinicians manage the social behavioral disturbances of this disease. Methods: Researchers observed 13 bvFTD patients in their homes and community-based settings and recorded field notes on their interpersonal interactions. A qualitative analysis of their social behavior was then conducted using ATLAS.ti application and a constant comparison method. Results: Qualitative analysis revealed the following themes: (1) diminished relational interest and initiation, indicating failure to seek social interactions; (2) lack of social synchrony/intersubjectivity, indicating an inability to establish and maintain interpersonal relationships; and (3) poor awareness and adherence to social boundaries and norms. These themes corresponded with changes from caregiver reports and behavioral scales. Conclusion: This analysis indicates that real-world observation validates the diagnostic criteria for bvFTD and increases understanding of social behavioral disturbances in this disorder. The results of this and future observational studies can highlight key areas for clinical assessment, caregiver education, and targeted interventions that enhance the management of social behavioral disturbances in bvFTD.

RESUMEN

Research has demonstrated that limited dialogue in end-of-life (EOL) care can negatively impact decision-making and place of death. Furthermore, when vulnerable populations are faced with EOL cancer care, they experience issues resulting from previous gaps in services attributed to sociocultural and economic issues that influence EOL care. These conditions place an additional burden on disadvantaged populations which can cause distress, especially as disparate conditions continue to persist. Little is known about Latinos' psychosocial concerns that lead to distress in EOL care. The objective of this study is to explore Latinas' experiences with life-limiting cancer conditions to identify the EOL care concerns that impact their dying experience. This study used a phenomenological approach to explore the EOL care concerns of 24 Latinas receiving treatment for metastatic cancers in a public sector healthcare system in Los Angeles, California. In-depth interviews were recorded and transcribed, and qualitative analysis was performed using Atlas.ti software.

Asunto(s)

RESUMEN

This research explores health care professionals' understanding of the problems that arise in managing a terminal condition impacting the Latino population and conceptualizes the components of patient advocacy that address gaps in end-of-life care for patients and their family members. Limited research exists regarding patient advocacy from the perspectives of health care providers working with vulnerable Latino populations utilizing a public sector health care system. Forty-six semi-structured interviews were conducted with providers from different disciplines including medicine, nursing, social work, and chaplaincy. Although roles and responsibilities vary among health providers, it is imperative that all providers become aware of the need for patient advocacy. Doing so is not only in the best interest of vulnerable Latino populations but also has overarching financial benefits and positive outcomes for patients, administrators, and public health care systems. Social workers are the ideal professionals to assume leadership roles and share their knowledge of how to advocate effectively for the most vulnerable populations.

Asunto(s)

RESUMEN

The objective of this study was to explore beliefs and treatment decisions of foreign-born Latino men from Cuba, Mexico, Colombia, and Venezuela, who have been diagnosed with cancer and who live in Central Florida, USA. Experiences related to knowledge of diagnosis, treatment decisions, communication with health providers, family involvement, and advance care planning (ACP) discussions following the diagnosis of cancer are central to this study. This study used qualitative in-depth semi-structured interviews and thematic analysis. The interviews were conducted with 15 Latino men who have been diagnosed with cancer within the past 5 years and who reside in the community. The interviews were conducted and transcribed in Spanish and then translated into English. The median age was 55.4 years. Nine Latino men had prostate cancer, two had brain cancer, two had colorectal cancer, and two had lung cancer. Emerging themes involved the suddenness of the diagnosis, fear of dying, expectations of diagnosis-related communication, reliance on physicians for treatment decisions, limited information pertaining to ACP, family support, and role changes. Latino men's limited knowledge of cancer diagnosis and treatment options coupled with their fear led them to immediately believe that they were going to die. Knowledge gaps regarding diagnosis-related communication, treatment decisions, and ACP varied among the men. The forthright diagnosis communication and the expectation to engage in decision making are contrary to Latinos men's beliefs of reliance on health providers decisions. The findings contribute to understanding Latino men's beliefs about a cancer diagnosis and treatment decisions.

Asunto(s)

RESUMEN

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 person's home, while N = 4 provided care to a family member in the caregiver's home. N = 4 paid caregivers provided care to terminally ill Latinos who reside in the caregiver's 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.

Asunto(s)