Capturing the perspectives of African American informal dementia caregivers: a phenomenological study.

Dementia can be overwhelming to families and their caregivers. Informal caregiving is a widespread mode of providing dementia care in African American communities, yet impact of caregiving on informal or family caregivers in African American communities is burdensome. This study aimed to describe the lived experiences of informal caregivers of African American People Living with Dementia (PLWD) to understand their perceptions of dementia and dementia care, caregiver support needs, and service needs. Interpretive phenomenological qualitative inquiry guided this study to understand caregivers' experiences and needs. Ten family caregivers of African American PLWD in the community participated in this study. Data were collected through in-depth interviews and a diary study approach to document and interpret caregivers' experiences. The data analysis was based on procedures of content analysis. Four major themes emerged from the in-depth interviews: caregiver burden, familism, lack of information and community-based resources, and desire and need for culturally appropriate community-based resources. Triangulated diary entry data complemented the in-depth interviews with similar themes. This study highlights how African American informal caregivers of PLWD face various caregiving needs and challenges in dementia care including lack of culturally appropriate community resources and information. The study illustrates that African American cultural beliefs of familism are significant aspects of their caregiving experience and their coping strategies. These study results provide a useful foundation for various stakeholders to develop culturally targeted interventions and programs to support African American informal caregivers and their family members with dementia.

Pre-Pandemic Landscape of the Oklahoma Public Health Workforce: A Case Study From the Region 6 Training Needs Assessment Survey, 2019.

CONTEXT: The COVID-19 pandemic highlighted the need for a well-trained public health workforce prior to the public health crisis. Public health training centers regularly assess workforce needs and their pre-pandemic data play vital roles in guiding public health workforce development beyond the crisis. PROGRAM: In 2019, Oklahoma partners of the Region 6 South Central Public Health Training Center (R6SCPHTC) co-conducted an online survey of the public health workforce located in the Health Resources & Services Administration Region 6. IMPLEMENTATION: Between March and April, the R6SCPHTC collected 503 surveys, including 201 surveys from Oklahoma. Questions inquired about demographic and workforce characteristics, work contexts, training needs and interests, training access and logistics, and knowledge of R6SCPHTC online resources. EVALUATION: Key findings included that two-thirds of the pre-pandemic Oklahoma public health workforce consisted of employees age 40 or older with few holding public health or medical degrees. The majority of respondents worked for health departments and Tribes, and almost half were frontline workers. Although at least half of the participants interested in training on public health activities and topics were familiar with them, confidence in their abilities related to these activities and topics was expressed by less than half. Qualitative data provided details on training needs addressed quantitatively and described new training areas. Survey participants expressed interest in diverse training delivery methods and technological devices. Most respondents were not familiar with the free trainings available through the R6SCPHTC. DISCUSSION: Similar to the regional and national public health workforce, Oklahoma's workforce needed training and support already before COVID-19. Time and resources need to be invested into the current and future workforce. While addressing priority public health skills and topics remains important, training on current and emerging topics is needed. Providing accessible trainings with expanded content will prepare Oklahoma's public health workforce for the future.

Assessing Culturally Tailored Dementia Interventions to Support Informal Caregivers of People Living with Dementia (PLWD): A Scoping Review.

The review aimed to identify and describe dementia care interventions and programs that are culturally tailored to support racial and ethnic minority informal caregivers of community-dwelling people living with dementia (PLWD) to identify gaps in need. Culturally targeted interventions to support vulnerable minority informal caregivers are important in addressing the care needs of PLWD and eliminating racial and ethnic dementia disparities. Nevertheless, little is known about the existing interventions and programs that are culturally tailored to support racial and ethnic minority groups, in particular, African-American caregivers in the care of their family members. We conducted a Scoping review, searching eight databases including MEDLINE, EMBASE, APA PsycINFO, CINAHL, PUBMED, Scopus, and Web of Science between January 2012 and June 2022. Our search identified 2669 records, of which 17 articles were included in the analysis. The review addressed how these interventions have been developed to meet the needs and preferences of minority caregivers, particularly, African-American caregivers in culturally responsive ways. Findings show that culturally tailored interventions have the potential to improve the caregiving ability of informal caregivers. Supporting informal caregivers appears to be an effective strategy often improving the well-being of PLWD and reducing caregiver burden. The review demonstrates the paucity and diversity of research on culturally tailored dementia interventions to reduce racial and ethnic disparities. This scoping review identified gaps in the existing literature and aims for future work to develop and investigate cultural tailoring of interventions.

Describing providers' perspectives on the needs and challenges of family caregivers of African American people living with dementia.

The primary purpose of this study was to explore the needs and challenges of African American family caregivers of People living with dementia (PLWD) from the perspective of service providers including healthcare and social service providers. The study conducted three online semi-structured focus group interviews with service providers (n = 15). Data were analyzed using Braun & Clarke's guide to thematic analysis approach. Five themes emerged from the analysis of the focus group data: (i) Inadequate information about resources; (ii) Dementia education; (iii) Burden of dementia on families; (iv) Limited financial support and funding; and (v) Suggestions for needed resources. Service providers expressed the lack of community-based dementia service and support programs in African American communities. Findings from the study indicated the need to provide culturally appropriate information on dementia caregiving. This study adds to the scope of knowledge by exploring the processes of seeking help and using services.

Ethics of Resident Involvement in Surgical Training.

AbstractBackground: Attending surgeons must maintain balance between promoting education and assuring safe, transparent patient care. This investigation aimed to define ethics that guide surgical training. We hypothesized that resident autonomy in the operating room is influenced by attending approach to patients, specifically patients considered to be vulnerable. MATERIALS AND METHODS: After IRB approval, surgeons from three institutions were invited to participate in a pilot, survey, exploring how principles of patient autonomy, physician beneficence, nonmaleficence, and justice apply to participant opinions. Responses were transcribed and coded for quantitative and qualitative analysis. RESULTS: 51 attendings and 55 residents completed the survey. We identified that patient autonomy is upheld through transparent consent practices. Intraoperative supervision is a key practice that maintains the principles of physician beneficence and nonmaleficence and mitigates the risk of resident participation. Vulnerable patients were defined by respondents as those unable to participate in their own consent and those limited by social determinants of health and barriers to medical literacy. In contrast, resident participation is not limited in the care of vulnerable patients but is restricted in cases of higher complexity and those procedures deemed to have lower error margins. CONCLUSIONS: Although residents measure the success of their training based on their level of intraoperative independence, autonomy afforded to the resident does not only depend on objective skill. There are ethical considerations that the attending must navigate as they decide on effective teaching and safe surgical management, which is especially relevant in the care of complex cases.

Training Community Health Workers to Address Disparities in Dementia Care: A Case Study From Oklahoma With National Implications.

The projected increase of dementia in the diverse aging US population calls for a well-prepared public health workforce. Community health workers (CHWs) can address dementia in culturally appropriate ways. Collaborating with stakeholders, we developed a train-the-trainer curriculum for CHWs and used a virtual training platform to test its feasibility with 77 CHWs. Pre-/post-evaluation data demonstrated modestly increased dementia knowledge scores. Training participants valued the resources shared and interacting with peers. Disseminating this training could contribute to closing gaps in dementia care in diverse communities, along with policies supporting CHWs as a workforce that reduces age-related disparities and promotes health equity.

Public Health Training Centers' Support for Community Health Workers: Case Studies of Needs Assessment, Training, and Student Field Placement Initiatives.

CONTEXT: Community health workers (CHWs) are vital frontline public health workers. Given their trusted roles and connection to and understanding of the communities they serve, CHWs are able to link underserved communities to resources and public health agencies. With CHWs' increased prominence in the public health workforce, calls have been made for expanding and supporting CHW training and career development opportunities. PROGRAM: Public health training centers (PHTCs) are mandated to assess public health workforce needs, provide evidence-based professional development trainings, and increase students' aptitude for working with underserved and underresourced communities through applied practice experiences. Public health training centers can support CHWs in each of these areas. DESIGN: Case studies from 3 PHTCs are provided to exemplify how PHTCs are well positioned to support the critical CHW workforce via assessment, training, and student field placements. IMPLEMENTATION: A regional needs assessment survey with a designated section for CHWs, the provision of accessible and relevant CHW training, and CHW-focused student field placements were implemented in PHTC Regions 6/South Central, 1/New England, and 5/Great Lakes, respectively. EVALUATION: The Region 6 needs assessment found that CHWs in Oklahoma had multiple core roles and training interests. A crosswalk of needs and available training in the region guided the creation of tailored CHW trainings. Across 35 CHW-targeted trainings in Region 1, 88.5% of trainees were satisfied with the trainings and identified actions they could take to apply information they learned to their work. Significant improvements ( P < .001) in knowledge occurred across the 13 trainings that had pre-/posttests. In Region 5, students engaged with CHW-based organizations in Wisconsin to inform statewide CHW priority action items and deliverables and found the field placements meaningful for their academic experience. DISCUSSION: Public health training centers' strengths in workforce development can complement and extend existing efforts to support the CHW workforce.

This is Our Lane: A Pilot Study Examining the Surgeon's Role in Social Justice Advocacy.

BACKGROUND: Despite the importance of social justice advocacy, surgeon attitudes toward individual involvement vary. We hypothesized that the majority of surgeons in this study, regardless of gender or training level, believe that surgeons should be involved in social justice movements. METHODS: A survey was distributed to surgical faculty and trainees at three academic tertiary care centers. Participation was anonymous with 123 respondents. Chi-square and Fisher's exact test were used for analysis with significance accepted when p < 0.05. Thematic analysis was performed on free responses. RESULTS: The response rate was 46%. Compared to men, women were more likely to state that surgeons should be involved (86% vs 64%, p = 0.01) and were personally involved in social justice advocacy (86% vs 51%, p = 0.0002). Social justice issues reported as most important to surgeons differed significantly by gender (p = 0.008). Generated themes for why certain types of advocacy involvement were inappropriate were personal choices, professionalism and relationships. CONCLUSIONS: Social justice advocacy is important to most surgeons in this study, especially women. This emphasizes the need to incorporate advocacy into surgical practice.

Cultural Unintelligibility and Marital Pressure: A Grounded Theory of Minority Stigma Against Women with Same-Sex Attraction in Mainland China.

Minority stigma against sexual minority women and its contributions to these women's health disparities have been widely investigated in Western countries. By contrast, little has been known about minority stigma against women with same-sex attraction (WSSA) in mainland China. This study aimed at exploring the nature, genesis, and pathways of minority stigma among this rarely studied minority group in terms of China's unique social and cultural organization of gender and sexuality. A grounded theory approach was applied to 28 participants of Chinese WSSA through in-depth telephone interviews to elicit their views and perspectives anchored in their daily experiences with gender hierarchy and normative heterosexuality. Findings of this study identified marital pressure and cultural unintelligibility as two principal components of minority stigma against Chinese WSSA. A conceptual framework was developed to illustrate how minority stigma relies on the mutually reinforcing loop of martial pressure and culturally unintelligible status of female same-sex attraction to oppress Chinese WSSA within and across intrapersonal, interpersonal, and structural levels. The parent-daughter relationship, laden with the Confucian value of filial piety, was highlighted as the major pathway of minority stigma to force Chinese women with same-sex attraction into heterosexual marriage and make female same-sex attraction culturally unintelligible. These findings lay a foundation for conceptualizing and measuring minority stigma of Chinese WSSA caused by the stigmatization of their same-sex attraction. Moreover, these findings would contribute greatly to understanding how cultural particularities critically affect the local process of stigmatization through which power relations and social control are practiced.

A Snapshot of Oklahoma's CHR/CHW Workforce: Results from the Region 6 Training Needs Assessment Survey, 2019.

Background ­: The Region 6 South Central Public Health Training Center conducts needs assessments to inform the development of online trainings tailored to the HRSA Region 6 health and public health workforce. The purpose of this study was to assess Oklahoma's Community Health Representative (CHR) / Community Health Worker (CHW) workforce characteristics, current trainings, and training needs to guide the development of online trainings. Methods ­: This survey-based needs assessment for health and public health workforce training needs asked about alternative job titles, top three health issues addressed, roles played, skills used, current trainings, and training needs. Descriptive statistical analysis provided insights about CHRs/CHWs. The Fisher's exact test was used to compare frequency of responses between CHRs and CHWs, with p-values <0.05 considered significant. We analyzed qualitative data by using a modified content analysis. Results ­: Fifty-one self-identified CHRs/CHWs in Oklahoma participated in the 2019 regional health and public health training needs assessment. Most CHRs/CHWs were female and identified as "frontline public health workers." Respondents reported a range of educational attainment and diverse job titles. CHRs worked at tribal health or public health organizations primarily in rural areas. Most CHWs worked in urban areas and were employed by state and local health departments or community-based organizations. CHRs/CHWs had a broad spectrum of roles and skills, with required trainings reflecting various organizational needs. CHRs/CHWs expressed strong interest in receiving additional trainings via multiple delivery formats. Discussion and Conclusions ­: Oklahoma's CHRs/CHWs would benefit from and utilize workforce development, including trainings on a broad spectrum of roles and skills in multiple delivery formats. Potential employers and funders across the state would benefit from education on CHRs/CHWs as a workforce, team-integration, and sustainable funding.

Diabetes among Hispanics in Oklahoma: Assessing Disparities to Guide Basic and Applied Research.

Background ­: Diabetes, a leading cause of morbidity and mortality in the United States, disproportionally affects minority populations. In 2015, Hispanics, the largest minority in the country, had the third highest rate of diabetes prevalence and the third highest age-adjusted rate of diabetes-related mortality. Substantial progress in understanding diabetes disparities nationally and in many areas of the country has been made. However, little is known about diabetes and related mortality among Hispanics in Oklahoma, which is known as a Hispanic "new Settlement" state due to the relatively recent and substantial growth of this population. Methods ­: We used Oklahoma Behavioral and Risk Factor Surveillance Survey data (2011-2016) to calculate population estimates of diabetes prevalence and selected sociodemographic characteristics for Hispanic and Non-Hispanic adults in the state. We used Oklahoma Death Registry data to estimate diabetes-related mortality rates for Hispanic and Non-Hispanic adults for the same five-year period. We examined differences in diabetes prevalence and diabetes-related mortality across selected sociodemographic characteristics. Results ­: Hispanics are the largest minority group in Oklahoma. Spanish is the most common non-English language spoken in the state. Hispanics are younger, poorer, less educated and experience less access to health care compared to other populations in Oklahoma. While Hispanics had the fifth highest reported diabetes prevalence rate during the five-year period examined, they had the third highest diabetes-related mortality rate in the state. Discussion and Conclusions ­: There is a need for community engagement and basic and applied research to help identify and reduce diabetes disparities in the growing Hispanic population in Oklahoma.

Community-Clinical Linkages With Community Health Workers in the United States: A Scoping Review.

Despite the proliferation of community-clinical linkage (CCL) interventions with community health workers (CHWs), little is known about the components of these programs or how linkages are realized. In this scoping review, we synthesize evidence concerning the role of CHWs in creating and sustaining CCLs aimed at improving individual health outcomes. Our inclusion criteria included peer-reviewed articles that described a CHW intervention in the United States that used a CCL model. A total of 2,776 titles and/or abstracts were screened and 47 articles underwent full text review. Two independent reviewers rated the screened articles based on additional criteria including the CHW connection to community and evidence of linkage follow up rather than simple referral. For the 11 peer-reviewed articles included in the final review, we describe the CHW's relationship to the community, training, and role within the intervention, linkage, and outcomes. We used a standardized framework to determine commonalities in CHW roles across the interventions. CCLs with CHWs positively affect the delivery of both clinical care and community resources across a range of disease areas in a variety of contexts. To identify effective CCL models, additional information on CHW training, CCL follow-up methods, and the CHW role in CCLs is recommended.

Documenting Community Health Worker Roles in Primary Care: Contributions to Evidence-Based Integration Into Health Care Teams, 2015.

The Patient Protection and Affordable Care Act provided community health workers (CHWs) with new opportunities, and current efforts develop evidence-based guidelines for CHW integration into clinical teams. This qualitative study documents CHW roles and activities in 3 federally qualified health care centers in southern Arizona. Community health worker clinical roles, activities, and integration varied by health center and were in flux. Integration included complementary roles, scheduled and everyday communications with team members, and documentation in the electronic health records. These findings contribute to evidence-based guidelines for CHW integration into clinical teams that are critical to maximizing CHW contributions to patient health improvements.

Shaping a Stories of Resilience Model from urban American Indian elders' narratives of historical trauma and resilience.

American Indians (AIs) have experienced traumatizing events but practice remarkable resilience to large-scale and long-term adversities. Qualitative, community-based participatory research served to collect urban AI elders' life narratives on historical trauma and resilience strategies. A consensus group of 15 elders helped finalize open-ended questions that guided 13 elders in telling their stories. Elders shared multifaceted personal stories that revealed the interconnectedness between historical trauma and resilience, and between traditional perceptions connecting past and present, and individuals, families, and communities. Based on the elders' narratives, and supported by the literature, an explanatory Stories of Resilience Model was developed.

Flexible Roles for American Indian Elders in Community-Based Participatory Research.

Community-based participatory research builds partnerships between communities and academic researchers to engage in research design, decision making, data collection, and dissemination of health promotion initiatives. Community-based participatory projects often have formal agreements or defined roles for community and academic partners. Our project (November 2012-November 2014) was designed to document life narratives of urban American Indian elders as a foundation for developing a resilience-based health promotion curriculum for urban American Indian adolescents aged 12 to 18. We used a flexible method for engaging community partners that honored the individual strengths of elders, encouraged them to describe how they wanted to contribute to the project, and provided multiple ways for elders to engage with university partners. We invited elders to participate in one or more of the following roles: as members of consensus panels to develop interview questions, as members of a community advisory board, or as participants in individual qualitative interviews. The flexibility of roles gave elders the opportunity to serve as advisors, co-developers, interviewees, or reviewers during 2 years of curriculum development. Engaging American Indian elders in the research process acknowledged the multiple layers of expertise they had as traditional leaders in the community while promoting trust in and ownership of the project. This flexible technique can be used by other communities that may not be comfortable with structured processes of engagement.

The Impact of Integrating Community Advocacy Into Community Health Worker Roles on Health-Focused Organizations and Community Health Workers in Southern Arizona.

Organizational environments may encourage community health workers (CHWs) to engage community members in improving their communities. We conducted open-ended interviews and focus groups to explore how participation in the Acción intervention, which trained CHWs in community advocacy, affected organizational capacity to support their CHWs. Supervisors described improved organizational recognition and trust of CHWs. Organizational leaders reported organizational benefits and increased appreciation of CHW leadership. Both expressed increased interest in future advocacy trainings. Limiting factors included organizational mission, CHW position descriptions, and funding. Findings indicate that, with training and funding, CHW community advocacy can be integrated into organizations with congruent missions.

Taking a community-based participatory research approach in the development of methods to measure a community health worker community advocacy intervention.

BACKGROUND: Public health advocacy is by necessity responsive to shifting sociopolitical climates, and thus a challenge of advocacy research is that the intervention must by definition be adaptive. Moving beyond the classification of advocacy efforts to measurable indicators and outcomes of policy, therefore, requires a dynamic research approach. OBJECTIVES: The purposes of this article are to (1) describe use of the CBPR approach in the development and measurement of a community health worker (CHW) intervention designed to engage community members in public health advocacy and (2) provide a model for application of this approach in advocacy interventions addressing community-level systems and environmental change. METHODS: The Kingdon three streams model of policy change provided a theoretical framework for the intervention. Research and community partners collaboratively identified and documented intervention data. We describe five research methods used to monitor and measure CHW advocacy activities that both emerged from and influenced intervention activities. DISCUSSION: Encounter forms provided a longitudinal perspective of how CHWs engaged in advocacy activities in the three streams. Strategy maps defined desired advocacy outcomes and health benefits. Technical assistance notes identified and documented intermediate outcomes. Focus group and interview data reflected CHW efforts to engage community members in advocacy and the development of community leaders. APPLICATION OF LESSONS LEARNED: We provide a model for application of key principles of CPBR that are vital to effectively capturing the overarching and nuanced aspects of public health advocacy work in dynamic political and organizational environments.

A community health worker intervention to address the social determinants of health through policy change.

Public policy that seeks to achieve sustainable improvements in the social determinants of health, such as income, education, housing, food security and neighborhood conditions, can create positive and sustainable health effects. This paper describes preliminary results of Acción para la Salud, a public health intervention in which Community health workers (CHWs) from five health agencies engaged their community in the process of making positive systems and environmental changes. Academic-community partners trained Acción CHWs in community advocacy and provided ongoing technical assistance in developing strategic advocacy plans. The CHWs documented community advocacy activities through encounter forms in which they identified problems, formulated solutions, and described systems and policy change efforts. Strategy maps described the steps of the advocacy plans. Findings demonstrate that CHWs worked to initiate discussions about underlying social determinants and environment-related factors that impact health, and identified solutions to improve neighborhood conditions, create community opportunities, and increase access to services.

Evidence for long-term impact of Pasos Adelante: using a community-wide survey to evaluate chronic disease risk modification in prior program participants.

Effective community-level chronic disease prevention is critical to population health within developed and developing nations. Pasos Adelante is a preventive intervention that aims to reduce chronic disease risk with evidence of effectiveness in US-Mexico residing, Mexican origin, participants. This intervention and related ones also implemented with community health workers have been shown to improve clinical, behavioral and quality of life indicators; though most evidence is from shorter-term evaluations and/or lack comparison groups. The current study examines the impact of this program using secondary data collected in the community 3-6 years after all participants completed the program. A proportional household survey (N = 708) was used that included 48 respondents who indicated they had participated in Pasos. Using propensity score matching to account for differences in program participants versus other community residents (the program targeted those with diabetes and associated risk factors), 148 natural controls were identified for 37 matched Pasos participants. Testing a range of behavioral and clinical indicators of chronic disease risk, logistic regression models accounting for selection bias showed two significant findings; Pasos participants were more physically active and drank less whole milk. These findings add to the evidence of the effectiveness of Pasos Adalente and related interventions in reducing chronic disease risk in Mexican-origin populations, and illustrate the use of innovative techniques for using secondary, community-level data to complement prior evaluation research.

Predictors and a framework for fostering community advocacy as a community health worker core function to eliminate health disparities.

OBJECTIVES: Using a mixed-method, participatory research approach, we investigated factors related to community health worker (CHW) community advocacy that affect social determinants of health. METHODS: We used cross-sectional survey data for 371 CHWs to assess demographics, training, work environment, and leadership qualities on civic, political, and organizational advocacy. We present advocacy stories to further articulate CHW activities. The data reported are from the recently completed National Community Health Workers Advocacy Study. RESULTS: CHWs are involved in advocacy that is community-focused, although advocacy differs by intrinsic leadership, experience, training, and work environment. We propose a framework to conceptualize, support, and evaluate CHW advocacy and the iterative processes they engage in. These processes create opportunities for community voice and action to affect social and structural conditions that are known to have wide-ranging health effects on communities. CONCLUSIONS: The framework presented may have utility for CHWs, their training programs, and their employers as well as funders and policymakers aiming to promote health equity.