Exploring the Lived Experiences of Rural Hospice Social Workers in Navigating "Cracked" Systems.

Social workers often encounter health and resource disparities and caregiver challenges in support of hospice patients and families. Social workers also play a critical role in navigating systems and confronting systemic barriers. Their input regarding macro practice is invaluable, though there is not much literature pertaining to end-of-life disparities as experienced from the social worker point of view. There is also limited research from the hospice social worker perspective, with little pertaining to those providing care in rural areas. To address these gaps, this phenomenological study explored the lived experiences of rural hospice social workers to better understand their role in these matters. Data collection occurred through in-depth unstructured qualitative interviews. A total of 19 rural hospice workers participated in the study. There were four main themes identified: systemic issues in hospice settings, resource and geographic barriers, tensions and benefits of interprofessional collaboration, and hospice work environment. Based on these findings, recommendations for hospice social work practice, research, and policy include support of and elevation of the voice of hospice social workers on the interprofessional team, assessment of resource barriers to improve hospice social work interventions and improve quality of life for dying persons, education of hospice administrators to understand best ways to support hospice social, and implementation of policy change to expedite access to caregiver resources at end of life.

Top Ten Tips Palliative Care Clinicians Should Know About Caring for Filipino American and Korean American Patients.

As of 2019, there are 4.2 million Filipino Americans (FAs) and 1.9 million Korean Americans (KAs) in the United States, largely concentrated in New York, California, Texas, Illinois, and Washington. In both populations, similar to the broader U.S. culture, one can find health literacy gaps around understanding and utilizing palliative care. In this article, we provide 10 cultural pearls to guide clinicians on how to sensitively approach FA and KA groups when addressing palliative and end-of-life (EOL) discussions. We fully celebrate that every person is an individual and care should be tailored to each person's goals, values, and preference. In addition, there are several cultural norms that, when appreciated and celebrated, may help clinicians to improve serious illness care and EOL discussions for members of these populations.

Measure of perceived social support from family, friends, and healthcare providers for Korean adolescents and young adults with cancer.

Objective: Assessing the perceived social support (PSS) that adolescents and young adults (AYAs) with cancer receive from family, friends, and healthcare providers is critical to promoting their adjustment. This study developed a reliable and comprehensive self-report PSS assessment tool that measures various aspects of social support by translating existing measurements into Korean. Methods: The translation was completed in accordance with international guidelines. To focus on cultural adaptation, the main ideas associated with items were translated to reflect the differences between Western and Eastern culture. In total, 144 Korean AYAs with cancer (mean age: 17 years; 46% female) completed the translated version. A separate principal component analysis (PCA) with an orthogonal quartimax rotation, a minimum eigenvalue of 1.0, and minimum factor loadings of 0.50 was used for each subscale. Cronbach's alpha coefficients were calculated for each PCA-derived subscale. Results: Four subscales with 46 items were identified. Two subscales represented perceived emotional support within the family (PSS-ESF, 14 items) and the AYA's perceived helpfulness within the family (PSS-HWF, 3 items). The third scale represented the perceived support of friends (PSS-Friends, 14 items). The final scale represented the perceived support of healthcare providers (PSS-HCPs, 15 items). Excellent reliability per subscale was demonstrated (Cronbach's alpha: 0.93 for PSS-ESF, 0.73 for PSS-HWF, and 0.92 each for PSS-Friends and PSS-HCPs). Conclusions: A culturally adapted and reliable Korean version questionnaire with four independent subscales was developed. Further assessment of the Korean PSS is required and will contribute to the development of culturally adapted and tailored interventions.

The Impact of Online and Offline Social Support on the Mental Health of Carers of Persons with Cognitive Impairments.

The carers of persons with cognitive impairments, including Alzheimer's have migrated to online platforms to seek help, yet studies on the use of online social support within the context of caregiving are underdeveloped. Guided by the social support theory, we examined the association of online and offline social support with depression and anxiety in the United States. Using a subsample from the 2017 and 2018 Health Information National Trends Survey (n = 264), we conducted ordered logistic regression to test mediation and moderation effects, which revealed that only offline, not online social support had a direct association with carers' mental health. In the moderation model, online social support interacted with life stressors, while offline social support interacted with caregiving burden. Findings are supported using a hybrid model that combines online and offline social support to improve carers' mental health.

Ethnoracial Disparities in Posttraumatic Stress Disorder Symptoms during the COVID-19 Pandemic: A Brief Report.

Despite the well-identified vulnerability of older adults during the COVID-19 pandemic, it is unclear about their experiences with COVID-related posttraumatic stress disorder symptomology (COVID-PTSD). This study examined ethnoracial disparities in the level of, and factors associated with, COVID-PTSD using a national data set, including 1926 Whites and 488 ethnoracial minorities. Results showed that ethnoracial minorities reported a greater COVID-PTSD than Whites. COVID-related distress was the common risk factor of COVID-PTSD for the both groups. Being a female and greater social support were associated with COVID-PTSD only for Whites, whereas higher education, greater IADL and fewer ADL limitations were associated with COVID-PTSD for ethnoracial minorities. The findings provided preliminary, but generalizable understanding of ethnoracial disparities in COVID-PTSD, among the Medicare beneficiaries aged ≥65.

Alzheimer's disease (AD) knowledge in Korean Americans: identifying knowledge gaps and misconceptions and examining predictors of AD knowledge.

OBJECTIVES: This study examined Alzheimer's disease (AD) knowledge and its predictors among Korean Americans (KAs). DESIGN: Convenience sampling was used to recruit KAs in the Greater Washington metropolitan area. A total of 268 KAs participated in the study and completed a cross-sectional survey in 2014. Using the Alzheimer's Disease Knowledge Scale (ADKS), overall and domain knowledge was assessed. Multiple regression analyses were conducted for overall and domain knowledge with predictors including exposure to AD, social engagement, sources and frequency of health-related information, stigmatic beliefs (pity, antipathy, and social distance), English proficiency, and education. RESULTS: KAs reported a 59% accuracy in the overall AD knowledge. At the domain level, KAs were most knowledgeable about assessment and diagnosis and least knowledgeable about caregiving. Our regression analyses showed that having a college degree or higher is associated with a greater overall AD knowledge. Three domain models of life impact, risk factors, and caregiving turned out to be significant: Having a college degree or higher is a predictor of greater knowledge in all three domains. Having more pity stigmatic beliefs is related to greater knowledge in both life impact and caregiving domains while having less pity stigmatic beliefs is associated with more risk factor knowledge; having less social distance stigmatic beliefs is associated with greater life impact knowledge; and having less antipathy stigmatic beliefs is related to better caregiving knowledge. CONCLUSION: Our findings revealed areas of misconceptions and knowledge gaps in KAs which need to be addressed in educational interventions. Different knowledge status across the domains demonstrates a multi-dimensional nature of AD knowledge. Multivariate findings confirmed the robust role of education in overall and domain AD knowledge. The effect of different AD stigmatic beliefs on certain AD knowledge domains suggests ways of how stigma change can be efficient for the purpose of increasing AD domain knowledge in KAs.

"We Are All Just Walking Each Other Home": Exploring the Lived Experiences of Rural Hospice Social Workers in "Companioning" the Dying.

Social workers play a critical role on the hospice team including assessing risk and safety, advocacy, grief counseling, referral and connection to resources and providing guidance through advance care planning and advance directives. However, the voice of the rural hospice social worker is often absent from research. To address this gap in the literature, this study aimed to explore lived experiences of rural hospice social workers to better understand their role and challenges. Non-experimental qualitative research design was used for this study. Data was collected through in-depth qualitative interviews. A total of 19 rural hospice social workers participated in the study. We used a phenomenological approach focusing on the common lived experiences of rural hospice social workers and thus interviews were unstructured. Field notes and data were collected until data saturation was achieved. Five main themes were identified: (1) meaning of hospice social work, (2) role of hospice social workers, (3) vulnerability and realness, (4) self-care, and (5) rural culture. Based on these findings, we identified recommendations for hospice social work practice, research and policy, in general, as well as for rural hospice social work specifically. Future research could explore lived experiences of hospice professionals or of the dying and could also explore social worker experience of resource barriers.

A Qualitative Exploration of End-of-Life Care Planning With Korean Americans: Awareness, Attitudes, Barriers, and Preferences.

This study aimed to explore how Korean American older adults viewed and anticipated engaging in end-of-life (EOL) care planning. An exploratory qualitative research design was adopted for the study, and data were collected through 3 focus group interviews. A total of 30 Korean American older adults 65 years or older participated in the study. A total of 10 themes emerged and were organized into 5 categories: (1) awareness (varying experience in EOL care planning and insufficient understanding about advance directives), (2) attitudes (comfort with talking about EOL and favorable views toward EOL planning), (3) barriers (concerns about noncompliance and concerns about change of mind), (4) preference for natural dying (life-sustaining treatment as added pain and suffering and no meaning of life when relying on life-sustaining treatment), and (5) preference for EOL planning process (EOL planning initiated by physicians and involvement of close family members). This exploratory study provides crucial insights into awareness and concerns regarding EOL care planning among Korean American older adults, updating existing evidence about their EOL needs. These findings support a culturally grounded approach to promote EOL planning for ethnic/racial minority groups.

Advance care planning among ethnic/racial minority older adults: Prevalence of and factors associated with informal talks, durable power of attorney for health care, and living will.

OBJECTIVES: Given the ethnic/racial disparities in end-of-life care, this study aimed to describe and identify factors affecting engagement in three types of advance care planning including informal talk, living will, and durable power of attorney for health care among ethnic/racial minority older adults. Living will refers to any written instruction about medical treatments at the end-of-life while durable power of attorney for health care allows someone to make a health care decision when an individual is incapable of making a reasoned decision. DESIGN: We used a subset of racial/ethnic minority groups drawn from the second wave of the National Health Aging and Trends Survey (n = 543) collected in 2012. RESULTS: The descriptive result showed that informal talk (60%) happened most followed by durable power of attorney for health care (30%) and living will (26.5%) completion. Multivariate logistic regression analyses found that higher education and lower preference toward life-sustaining treatment were associated with engagement in all three types of advance care planning. Having multimorbidity and U.S. born were associated with having informal talk. Non-Hispanic others were more likely to have informal talk and complete durable power of attoreny for health care to compared to Blacks. Furthermore, married older adults were more likely to complete living wills compared to those separated/divorced or never married. CONCLUSIONS: Our findings about different factors affecting engagement in advance care planning indicate that we may need targeted approaches to promote each type of advance care planning for ethnic/racial minority older adults.

Examining public stigma of Alzheimer's disease and its correlates among Korean Americans.

This study examined public stigma associated with Alzheimer's disease (AD) among Korean Americans and identified factors affecting their public stigma. Data used in the study were collected using a cross-sectional survey with 268 Korean Americans. Guided by attribution theory, different domains of public stigma were assessed: pity, antipathy, and social distance. Hierarchical regression analyses were conducted to examine the effects of sociodemographic characteristics, exposure to AD, social networking, and AD knowledge on each stigma domain. The influence of emotional attributions (pity and antipathy) on behavioral attributions (social distance) in the stigma process suggested in attribution theory was also examined. Results show that pity is most prevalent followed by social distance and antipathy. Being more proficient in English, knowing fewer relatives/friends with AD, and knowing less about AD risk factors are associated with having more pity stigma. Being less socially engaged and knowing less about AD risk factors are related to having more antipathy stigma. Being younger and more proficient in English and having stronger antipathy stigma are associated with having more social distance stigma. Findings reveal multifaceted nature of public stigma associated with AD in Korean Americans and suggest that we need to work on both positive and negative sides of public stigma for stigma change. Findings of different factors associated with each public stigma domain can be considered when trying to foster and/or reduce certain stigmatic beliefs and behaviors associated with AD.

Family Caregiving Situations and Engagement in Advance Care Planning.

Background: Family members are involved in the decision-making process of advance care planning (ACP). However, there is limited evidence about how family caregiving situations affect engagement in ACP. Objective: To understand how agreement on caregiving situations and caregiving burdens are predictive of engagement in ACP of older adults. Design: Cross-sectional secondary data. Setting/Subjects: Subjects were nationally representative of adults ages 65 or older from the National Health and Aging Trends Study. Measurements: Informal engagement in ACP was measured based on whether respondents had discussed an end-of-life care option. The study involving formal engagement in ACP asked whether respondents have completed durable powers of attorney or living wills. Family members' agreement on caregiving situations and caregiving burdens were used to measure caregiving situations. We also include sociodemographic and health-related variables. Results: Higher levels of disagreement between family members concerning care for older adults were associated with engagement in formal ACP (odds ratio [OR] = 0.5); there were higher levels of caregiver burdens with engagement in formal ACP (OR = 1.1). The factors of being age 85 or older (OR = 2.2) and having fallen down in the previous year (OR = 1.9) were also related to formal engagement in ACP. Being white and having high school diplomas were associated with both informal and formal engagement in ACP. Conclusions: Caregiving situations may affect care recipients' decision-making regarding informal and formal engagement in ACP in different ways, suggesting different intervention strategies for different types of ACP.

The Intention to Discuss Advance Care Planning in the Context of Alzheimer's Disease Among Korean Americans.

BACKGROUND AND OBJECTIVES: Advance care planning (ACP) is crucial for quality end-of-life care for patients with Alzheimer's disease. However, limited evidence is available about ACP among ethnic minorities, particularly in the context of Alzheimer's disease. The purpose of this study was to examine intention to discuss ACP for a family member with Alzheimer's disease among Korean Americans. Guided by the theory of planned behavior and prior research, we examined the relationships between acculturation, attitudes, subjective norms, perceived control, and intention to discuss ACP for a family member with Alzheimer's disease. RESEARCH DESIGN AND METHODS: Path analyses were conducted on a cross-sectional convenience sample of 261 Korean Americans. Age, gender, education, and knowledge about Alzheimer's disease and ACP were included as covariates. RESULTS: Our descriptive findings showed positive attitudes, strong subjective norms, and a high level of perceived control toward ACP discussion among the participants. The path analyses revealed that attitudes and subjective norms were positively related to intention for ACP discussion. Perceived control was not related to intention for ACP discussion. Among the covariates, greater knowledge about Alzheimer's disease was the only factor shown to be associated with the intention for ACP discussion. DISCUSSION AND IMPLICATIONS: To promote ACP among this population, educational interventions designed to address positives attitudes and subjective norms toward ACP are suggested.

Death Attitudes Among Middle-Aged Koreans: Role of End-of-Life Care Planning and Death Experiences.

The purpose of this study was to examine factors affecting death attitudes among middle-aged Koreans. In addition, the study explored the interaction effect between knowledge about end-of-life care planning and the experience of death of family or friends on death attitudes. The sample was obtained from a national survey with middle-aged adults in South Korea ( n = 2,026). Multivariate regression analysis revealed significant main effects and an interaction effect between knowledge about end-of-life care planning and the experience of death on death attitudes. Greater knowledge of end-of-life care planning was associated with more positive attitudes toward death; however, the effect was stronger for those who had not experienced the death of family or friends. Being older and having greater life satisfaction were also associated with more positive attitudes toward death. This study suggests that end-of-life education can help middle-aged adults embrace the final stage of life and prepare for their own death.

Attitudes Toward Alzheimer's Care-Seeking Among Korean Americans: Effects of Knowledge, Stigma, and Subjective Norm.

PURPOSE: Early detection of Alzheimer's disease (AD) ensures that affected individuals and their caregivers can make appropriate plans for health care needs, yet many ethnic minorities delay seeking care for AD until the disease has progressed. This study examined attitudes toward care-seeking for AD among Korean Americans (KAs) and identified factors affecting their attitudes. METHODS: A cross-sectional survey was used to collect data from 234 KA adults. We conducted hierarchical regression analyses to examine the effects of sociocultural background (age, gender, education, cultural orientation), AD knowledge and exposure to AD, and beliefs about AD (stigma of pity, shame, and public avoidance) and AD care (subjective norm) on KAs' attitudes toward seeking AD care from primary care physicians (PCPs) and AD specialists. We also tested whether knowledge of AD moderated the impact of beliefs about AD and AD care on KAs' attitudes toward seeking AD care. RESULTS: For both PCPs and AD specialists, the subjective norm had the strongest effect on KAs' attitudes toward care seeking (ß = 0.557 for PCPs, ß = 0.360 for specialists). Effects of stigma beliefs disappeared in the presence of the subjective norm. AD knowledge moderated the impact of the subjective norm on the attitudes toward both PCPs (ß = -1.653) and specialists (ß = -1.742). IMPLICATIONS: The significance of the subjective norm in KAs' attitudes toward AD care-seeking underscores the importance of public education, and our study suggests that increasing AD knowledge could facilitate a change in public attitudes toward seeking AD care.

Exploring experience and perspectives of foreign-born direct care workers in dementia care: Accounts of Korean American personal care aides caring for older Korean Americans with dementia symptoms.

This focus group study explored experience of Korean American personal care aides caring for older Korean Americans with dementia symptoms. Personal care aides described dementia caregiving as challenging, demanding and stressful, yet they cared for their clients with love and affection, particularly with jeong (i.e., a Korean cultural concept of love, affection, sympathy, and bondage). They learned about dementia mostly through their caregiving experience and expressed their need and strong desire to learn more about dementia. They felt for family struggle and observed family conflict and filial obligation. They advocated the value of personal care aides' involvement in dementia care. This study revealed a pressing need for dementia training for personal care aides and called for an outreach effort to recruit and train direct care workers with potential of providing culturally competent care for traditionally underserved ethnic minorities.

Facilitators and Barriers for Advance Care Planning Among Ethnic and Racial Minorities in the U.S.: A Systematic Review of the Current Literature.

Growing evidence suggests a low engagement in advance care planning (ACP) among ethnic minorities in the U.S. The purpose of this study was to synthesize findings from prior research about ACP among ethnic minorities. An extensive literature search was conducted using multiple electronic databases. After applying inclusion criteria, 26 studies were included. Four categories of facilitators and barriers to ACP were identified: (1) Socio-demographic factors, (2) health status, literacy and experiences, (3) cultural values, and (4) spirituality. Socio-demographic factors showed inconsistent findings regarding their association with ACP engagement. Worse health status and knowledge about ACP are common facilitators across ethnic minority groups, whereas mistrust toward the health care system was a barrier only for Blacks. Collectivistic cultural values influenced ACP engagement among Latinos and Asian Americans; however, spirituality/religion played an important role among Blacks. The implications for culturally competent approaches to promote ACP and future research directions are discussed.

Psychometric evaluation of the Caregiver Self-Efficacy Scale with Korean Americans.

This study evaluated the psychometric properties of a Korean version of the Caregiver Self-Efficacy Scale (CSE-K). The sample included 145 Korean American caregivers. Confirmatory factor analyses (CFA) were conducted to examine the factor structure of the CSE-K. We tested convergent validity of the CSE-K by examining its relationships with caregiver depression and burden. Internal consistency reliability of the CSE-K was also tested. The initial model of CFA based upon the structure of the original CSE revealed the poor model fit; however, the revised model produced the excellent model fit. Convergent validity was established, and excellent internal consistency reliability was found in the CSE-K. The results of this study show that the CSE-K is a reliable and valid measurement to assess caregiver self-efficacy for Korean American caregivers.

Intention to Use Long-Term Care Facilities: Differences beween Korean Pre-elderly and Korean Baby-boomers.

With the rapidly increasing number of older adults, dealing with long-term care (LTC) needs becomes an emerging issue in South Korea. This study aims to examine factors affecting the intention to use longtermcare facilities with two groups of young-old adults: (1) Korean pre-elderly (KPE) and (2) Korean babyboomers (KBB). Guided by Andersen's behavioral model of health service use and prior research, predisposing characters, enabling resources, need factors, availabilities of informal care and self-care activities were used as predictors. In the final analyses, 803 KPE and 966 KBB were included. The results of logistic regression analyses showed different findings in two groups. Age, education, spouse's physicalhealth, and self-care activities for relationship with family and friends are significantly associated with intention to use LTC facilities among KPE. However, income, physical health of respondents, and relationship satisfaction with children are significantly related to intention of use LTC facilities in the group of KBB. This study suggests different LTC needs between KPE and KBB. Health care professionals and policy makers need to consider such differences to provide quality LTC care for them.

The Effects of Caregiving Resources on Perceived Health among Caregivers.

This study examined how various types of resources influence perceived health of caregivers. Guided by the conservation of resources theory, a caregiver health model was built and tested using structural equation modeling. The caregiver health model consisted of caregiving situations (functional limitations and cognitive impairments of older adults and caregiving time), resources (financial resources, mastery, social support, family harmony, and service utilization), caregiver burden, and perceived health of caregivers. The sample included 1,837 unpaid informal caregivers drawn from the 2004 National Long-Term Caregiver Survey. The model fit indices indicated that the first structural model did not fit well; however, the revised model yielded an excellent model fit. More stressful caregiving situations were associated with fewer resources and higher burden, whereas greater resources were associated with lower burden and better perceived health of caregivers. The results suggest explicit implications for social work research and practice on how to protect the health of caregivers.