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.
BackgroundIn the United States, over 15 million informal caregivers provide unpaid care to people with Alzheimer disease (AD). Compared with others in their age group, AD caregivers have higher rates of stress, and medical and psychiatric illnesses. Psychosocial interventions improve the health of caregivers. However, constraints of time, distance, and availability inhibit the use of these services. Newer online technologies, such as social media, online groups, friendsourcing, and crowdsourcing, present alternative methods of delivering support. However, limited work has been done in this area with caregivers.ObjectiveThe primary aims of this study were to determine (1) the feasibility of innovating peer support group work delivered through social media with friendsourcing, (2) whether the intervention provides an acceptable method for AD caregivers to obtain support, and (3) whether caregiver outcomes were affected by the intervention. A Facebook app provided support to AD caregivers through collecting friendsourced answers to caregiver questions from participants’ social networks. The study’s secondary aim was to descriptively compare friendsourced answers versus crowdsourced answers.MethodsWe recruited AD caregivers online to participate in a 6-week-long asynchronous, online, closed group on Facebook, where caregivers received support through moderator prompts, group member interactions, and friendsourced answers to caregiver questions. We surveyed and interviewed participants before and after the online group to assess their needs, views on technology, and experience with the intervention. Caregiver questions were pushed automatically to the participants’ Facebook News Feed, allowing participants’ Facebook friends to see and post answers to the caregiver questions (Friendsourced answers). Of these caregiver questions, 2 were pushed to crowdsource workers through the Amazon Mechanical Turk platform. We descriptively compared characteristics of these crowdsourced answers with the friendsourced answers.ResultsIn total, 6 AD caregivers completed the initial online survey and semistructured telephone interview. Of these, 4 AD caregivers agreed to participate in the online Facebook closed group activity portion of the study. Friendsourcing and crowdsourcing answers to caregiver questions had similar rates of acceptability as rated by content experts: 90% (27/30) and 100% (45/45), respectively. Rates of emotional support and informational support for both groups of answers appeared to trend with the type of support emphasized in the caregiver question (emotional vs informational support question). Friendsourced answers included more shared experiences (20/30, 67%) than did crowdsourced answers (4/45, 9%).ConclusionsWe found an asynchronous, online, closed group on Facebook to be generally acceptable as a means to deliver support to caregivers of people with AD. This pilot is too small to make judgments on effectiveness; however, results trended toward an improvement in caregivers’ self-efficacy, sense of support, a...
This research piloted an e-health intervention that used social media to friendsource peer support for Alzheimer's disease (AD) caregivers. Friendsourcing is a variant of crowdsourcing. Crowdsourcing recruits online participants who share a characteristic that makes their volunteerism meaningful when they join to achieve an outcome. Friendsourcing recruits online participants who share membership in a social network that makes their volunteerism meaningful when they join to achieve an outcome. This paper introduces our friendsourcing intervention research and examines the effects on the psychological well-being of AD caregivers. After a sixweek intervention, caregivers were found to have significantly decreased burden (Z=-2.01, p<.05) and perceived stress (Z=-2.95, p<.01). Emotional and informational support scores were significantly increased (Z=-2.32, p<.05). Qualitative data analysis of the intervention identified positive effects in new caregiving knowledge acquisition and application and reduced stress in the acceptance of the caregiving role. Joining social networks in support groups through friendsourcing was feasible for AD caregivers who were familiar with social media, and can provide another means of guiding the development of their personal support networks.
Background and Objectives Advance care planning (ACP) is a critical component of health care affecting the quality of later life. Responding to the increase in the older immigrant population in the United States, this empirical study explored the racial/ethnic gaps in ACP behaviors among older immigrants and examined the end-of-life (EOL) care planning and preferences of foreign-born immigrant older adults focusing on race/ethnicity, acculturation, health need factors, and enabling social factors (financial capability, public assistance, and informal supports) after controlling predisposing factors (sociodemographic characteristics). Research Design and Methods Using a subsample from the National Health and Aging Trends Study 2011 and 2012, hierarchical logistic regression models of the EOL plan and preferences were examined with 50 multiple imputation data sets ( n = 232). Results Descriptive statistics reveal lower ACP engagement of immigrants from racial/ethnic minority groups. In logistic models, however, only Black immigrants were less likely than Whites to have EOL conversations. Among acculturation factors, age at immigration was only negatively associated with having a durable power of attorney for health, but not significantly associated with other ACP behaviors. Instead, health and social factors, primarily need in health and informal support (i.e., number of coresidents and receiving financial help from family members), were associated with different types of ACP components. Receiving public assistance (i.e., receiving Medicaid and SSI) were positively associated with EOL treatment preferences. Discussion and Implications Older foreign-born immigrants, in general, showed lower ACP engagement than the overall older population. Moreover, minority immigrants were lower on ACP engagement than both White immigrants. This study highlights the need for formal and informal assistance for enhancing EOL planning for older immigrants. Adding to the culturally competent approach, policy efforts should address social and health factors that accrued throughout individuals’ life spans and affect older immigrants’ EOL preparation and care.
A common assumption in public social service organizations is that workload may be positively associated with caseload. However, few empirical studies have examined what specific characteristics of caseload affect caseworkers' workloads in the child welfare system. This study attempts to address this gap by identifying specific individual and regional factors that influence both subjective and objective dimensions of workloads. Survey data were collected from 1,244 caseworkers at one public child welfare agency in a Midwestern state in the United States. The data indicated that both perceptions of unmanageable workloads and self‐reported overtime work were significantly higher when caseworkers had a greater number of cases than the state caseload standard for the investigations units and worked with at least two different types of cases simultaneously (e.g., working with both investigation and ongoing service cases). Additionally, sufficient staffing numbers to meet caseload demands at the regional level significantly decreased the odds ratio of having to do overtime work. The major findings suggest that the objective and subjective dimensions of workload vary by individual‐ and regional‐level variables. Practice implications are discussed for effective and efficient workload management in the public child welfare system.
The objective of this study was to analyze caregivers’ authentic perceptions of and experiences with the Affordable Care Act (ACA). This mixed-methods study identified and analyzed caregivers’ unsolicited posts on a national online forum. Data posted in 2011 to 2017 were collected. The text-mining thematic analysis method was used to code and analyze 514 caregiver posts. Although many caregiver posts about the ACA had a negative tone, perceptions became more positive over time. Three overall themes emerged: (a) concern about cost implications of placement decisions for care recipients, (b) skepticism about government and health care system support of their caregiving roles, and (c) caregivers’ own well-being and concerns about health insurance. Clear and effective communication between policymakers, health professionals, and caregivers is needed to enhance health system literacy. Policymakers, as well as health and social care professionals working with Alzheimer’s patients and their families, should be empowered to develop and support a family-centered service system.
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