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Importance: The potential role of living alone in either facilitating or hampering access to and use of services for older adults with cognitive impairment is largely unknown. Specifically, it is critical to understand directly from health care and social services professionals how living alone creates barriers to the access and use of supportive health care and social services for racially and ethnically diverse patients with cognitive impairment. Objective: To identify the potential role of living alone in the access and use of health care and social services for diverse patients with cognitive impairment by investigating professionals' perceptions of caring for such patients who live alone in comparison with counterparts living with others. Design, Setting, and Participants: This qualitative study of 76 clinicians, social workers, and other professionals used semistructured interviews conducted between February 8, 2021, and June 8, 2022, with purposively sampled professionals providing services to diverse patients with cognitive impairment in Michigan, California, and Texas. Main Outcomes and Measures: Clinicians, social workers, and other professionals compared serving patients with cognitive impairment and living alone vs counterparts living with others. An inductive content analysis was used to analyze the interview transcripts. Results: A total of 76 professionals were interviewed (mean [SD] age, 49.3 [12.7] years); 59 were female (77.6%), 8 were Black or African American (11%), and 35 were White (46%). Participants included physicians, nurses, social workers, and home-care aides, for a total of 20 professions. Participants elucidated specific factors that made serving older adults living alone with cognitive impairment more challenging than serving counterparts living with others (eg, lacking an advocate, incomplete medical history, requiring difficult interventions), as well as factors associated with increased concerns when caring for older adults living alone with cognitive impairment, such as isolation and a crisis-dominated health care system. Participants also identified reasons for systematic unmet needs of older adults living alone with cognitive impairment for essential health care and social services, including policies limiting access and use to public home-care aides. Conclusions and Relevance: In this qualitative study of professionals' perspectives, findings suggest that living alone is a social determinant of health among patients with cognitive impairment owing to substantial barriers in access to services. Results raised considerable concerns about safety because the US health care system is not well equipped to address the unique needs of older adults living alone with cognitive impairment.
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Disfunción Cognitiva , Utilización de Instalaciones y Servicios , Accesibilidad a los Servicios de Salud , Ambiente en el Hogar , Anciano , Femenino , Humanos , Masculino , Persona de Mediana Edad , Población Negra , Disfunción Cognitiva/terapia , Servicio Social , Trabajadores Sociales , Atención a la Salud , Estados Unidos , Adulto , Actitud del Personal de Salud , BlancoRESUMEN
Background: Black/African Americans are receiving COVID-19 vaccines at much lower rates than whites. However, research is still evolving that explains why these vaccination rates are lower. The aim of this study was to examine the effects of the pandemic among older Black/African Americans, with an emphasis on trust and vaccine intention prior to vaccine development. Methods: Data were collected between July and September 2020 from 8 virtual focus groups in Detroit, MI and San Francisco Bay Area, CA with 33 older African Americans and 11 caregivers of older African Americans with cognitive impairment, supplemented by one virtual meeting with the project's Community Advisory Board. Inductive/deductive content analysis was used to identify themes. Results: Five major themes influenced the intention to be vaccinated: uncertainty, systemic abandonment, decrease in trust, resistance to vaccines, and opportunities for vaccination. The last theme, opportunities for vaccination, emerged as a result of interaction with our CAB while collecting project data after the vaccines were available which provided additional insights about potential opportunities that would promote the uptake of COVID-19 vaccination among older Black/African Americans. The results also include application of the themes to a multi-layer framework for understanding precarity and the development of an Integrated Logic Model for a Public Health Crisis. Conclusions: These findings suggest that trust and culturally relevant information need to be addressed immediately to accelerate vaccine uptake among older Black/African Americans. New initiatives are needed to foster trust and address systemic abandonment from all institutions. In addition, culturally relevant public health campaigns about vaccine uptake are needed. Thus, systemic issues need immediate attention to reduce health disparities associated with COVID-19.
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OBJECTIVE: To examine the effects of the COVID-19 pandemic among Latino communities, with an emphasis on understanding barriers and facilitators to vaccine intention prior to the development of the vaccine. METHODS: Qualitative data were collected between April and June 2020 from 3 focus groups with Latino adults (n = 21) and interviews with administrators of community-based organizations serving Latino communities (n = 12) in urban (Los Angeles) and rural (Fresno) California, supplemented by Community Advisory Board input in May 2021to elucidate the findings. Data were analyzed with deductive content analysis. RESULTS: We have identified four main themes that are barriers to vaccinating against COVID-19: 1) concerns about accessing appropriate healthcare services, 2) financial issues and 3) immigration matters, as well as 4) misinformation. CONCLUSIONS: Findings illustrate the pervasive role of addressable social determinants of health in the intention of rural and urban Latino communities in being vaccinated, which is a pressing public health issue. Policy implications: Findings provide evidence for a systemic shift to prioritize equitable access to COVID-19 vaccines to Latino communities.
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COVID-19 , Vacunas , Humanos , Vacunas contra la COVID-19 , Intención , Pandemias , COVID-19/epidemiología , COVID-19/prevención & control , Hispánicos o LatinosRESUMEN
Introduction: Despite evidence that Hispanic/Latino populations are 1.5 times more likely than non-Latino Whites to develop Alzheimer's disease and related dementias (ADRD), Latinos are underrepresented in clinical trials testing treatments for ADRD. Data are needed on facilitators of ADRD clinical trial participation in Latinos. We leveraged in-depth qualitative methods to elucidate barriers and facilitators to participating in ADRD clinical trials in a large and diverse sample of Latinos; and to provide timely and actionable strategies to accelerate representation of Latinos in clinical trials on ADRD. Methods: Data were collected in California between January 2019 and June 2020 from 25 focus groups (FGs): eight with Latino adults ages 18 to 49 (n = 54), nine with Latino adults ages 50+ (n = 75), and eight with caregivers of Latino older adults with ADRD (n = 52). Twelve community-based organization administrators were also interviewed. Transcripts of FGs and interviews were entered into Atlas.ti software. Three independent team members analyzed the transcripts with inductive/deductive qualitative content analysis. We triangulated data from stakeholder groups across sites, we used collaborative coding, and used the Consolidated Criteria for Reporting Qualitative Research. Results: An overarching theme was a tension between wanting to learn more about ADRD and to participate in ADRD research but having limited awareness and opportunity. Five themes were identified: (1) remaining in limbo, (2) wanting information about ADRD, (3) wanting information on research about ADRD, (4) clearing researchers through trusted local organizations, and (5) practicing altruism through engagement in research opportunities. Discussion: To increase representation of Latino communities in clinical trials on ADRD, bilingual information and education on ADRD and clinical trials needs to be better disseminated. Also, working with trusted local, regional, and national organizations can increase participation. Importantly, Latino participation can increase when research teams demonstrate altruistic actions and inform participants of public health reasons requiring their involvement. HIGHLIGHTS: Participation in clinical trials on Alzheimer's disease and related dementias (ADRD) is limited among Latinos/Hispanics.Knowing the high prevalence of ADRD in Latinos increases willingness to participate.Observing altruism from researchers increases willingness to participate.Invitations from multiple organizations increases willingness to participate.Researchers should include public health reasons requiring Latinos' involvement.
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BACKGROUND AND OBJECTIVES: Even before the COVID-19 pandemic, older adults with cognitive impairment living alone (an estimated 4.3 million individuals in the United States) were at high risk for negative health outcomes. There is an urgent need to learn how this population is managing during the pandemic. RESEARCH DESIGN AND METHODS: This is a qualitative study of 24 adults aged 55 and older living alone with cognitive impairment from diverse racial/ethnic backgrounds. Participants' lived experiences during the pandemic were elicited via 59 ethnographic interviews conducted over the phone either in English, Spanish, or Cantonese. Using a qualitative content analysis approach, interview transcripts were analyzed to identify codes and themes. RESULTS: Qualitative analysis of transcripts revealed 5 themes: (a) fear generated by the pandemic, (b) distress stemming from feeling extremely isolated, (c) belief in misinformation, (d) strategies for coping during the pandemic, and (e) the importance of access to essential services. DISCUSSION AND IMPLICATIONS: This pandemic put a spotlight on the precarity and unmet needs of older adults living alone with cognitive impairment. Findings underscore the need to expand access to home care aides and mental health services for this population.
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COVID-19 , Disfunción Cognitiva , Adaptación Psicológica , Anciano , Disfunción Cognitiva/epidemiología , Humanos , Pandemias , SARS-CoV-2 , Estados Unidos/epidemiologíaRESUMEN
Black/African American populations are underrepresented as participants in dementia research. A major barrier to participation of African American older adults in dementia research is a tendency to distrust research institutions owing to both historical and contemporary racism. Building on the Ford framework, the objective of our study was to examine factors that influence participation in dementia research among African American older adults and caregivers, with an emphasis on understanding factors related to trust. Data were collected during January 2019 and March 2020 from 10 focus groups with African American older adults (n=91), 5 focus groups with caregivers (n=44), and interviews with administrators of community-based organizations (n=11), and meetings with our Community Advisory Board. Inductive/deductive content analysis was used to identify themes. The results identified an overall tension between distrust of researchers and a compelling desire to engage in dementia research. This overarching theme was supported by six themes that provided insights about the multiple layers of distrust, as well as expectations about the appropriate conduct of researchers and academic institutions. Strong commitment to the community was identified as a priority. The findings suggest that a paradigm shift is needed to increase the representation of African Americans in dementia research. In this new paradigm, earning the trust of African American communities becomes a systemic endeavor, with academic, state, and national institutions deeply committed to earning the trust of African American communities and guiding researchers in this endeavor. The findings also generated actionable recommendations to help improve representation of African American older adults in dementia research.