RESUMO
NIH has acknowledged and committed to ending structural racism. The framework for NIH's approach, summarized here, includes understanding barriers; developing robust health disparities/equity research; improving its internal culture; being transparent and accountable; and changing the extramural ecosystem so that diversity, equity, and inclusion are reflected in funded research and the biomedical workforce.
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Pesquisa Biomédica , National Institutes of Health (U.S.) , Racismo Sistêmico , Diversidade Cultural , Humanos , Apoio à Pesquisa como Assunto/economia , Estados UnidosRESUMO
BACKGROUND: The COVID-19 pandemic had a profound social and economic impact across the United States due to the lockdowns and consequent changes to everyday activities in social spaces. METHODS: The COVID-19's Unequal Racial Burden (CURB) survey was a nationally representative, online survey of 5,500 American Indian/Alaska Native, Asian, Black/African American, Latino (English- and Spanish-speaking), Native Hawaiian/Pacific Islander, White, and multiracial adults living in the U.S. For this analysis, we used data from the 1,931 participants who responded to the 6-month follow-up survey conducted between 8/16/2021-9/9/2021. As part of the follow-up survey, participants were asked "What was the worst thing about the pandemic that you experienced?" and "Was there anything positive in your life that resulted from the pandemic?" Verbatim responses were coded independently by two coders using open and axial coding techniques to identify salient themes, definitions of themes, and illustrative quotes, with reconciliation across coders. Chi-square tests were used to estimate the association between sociodemographics and salient themes. RESULTS: Commonly reported negative themes among participants reflected disrupted lifestyle/routine (27.4%), not seeing family and friends (9.8%), and negative economic impacts (10.0%). Positive themes included improved relationships (16.9%), improved financial situation (10.1%), and positive employment changes (9.8%). Differences in themes were seen across race-ethnicity, gender, and age; for example, adults ≥ 65 years old, compared to adults 18-64, were more likely to report disrupted routine/lifestyle (37.6% vs. 24.2%, p < 0.001) as a negative aspect of the pandemic, and Spanish-speaking Latino adults were much more likely to report improved relationships compared to other racial-ethnic groups (31.1% vs. 14.8-18.6%, p = 0.03). DISCUSSION: Positive and negative experiences during the COVID-19 pandemic varied widely and differed across race-ethnicity, gender, and age. Future public health interventions should work to mitigate negative social and economic impacts and facilitate posttraumatic growth associated with pandemics.
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COVID-19 , Adulto , Idoso , Humanos , Controle de Doenças Transmissíveis , COVID-19/epidemiologia , Etnicidade , Pandemias , Estados Unidos/epidemiologiaRESUMO
BACKGROUND: Delays in health care have been observed in the U.S. during the COVID-19 pandemic; however, the prevalence of inability to get needed care and potential disparities in health care access have yet to be assessed. METHODS: We conducted a nationally representative, online survey of 5,500 American Indian/Alaska Native, Asian, Black/African American, Latino (English- and Spanish-speaking), Native Hawaiian/Pacific Islander, White, and multiracial adults between 12/2020-2/2021 (baseline) and 8/16/2021-9/9/2021 (6-month follow-up). Participants were asked "Since the start of the pandemic, was there any time when you did not get medical care that you needed?" Those who responded "Yes" were asked about the type of care and the reason for not receiving care. Poisson regression was used to estimate the association between sociodemographics and inability to receive needed care; all analyses were stratified by chronic condition status. Chronic conditions included: chronic obstructive pulmonary disease (COPD), heart conditions, type 2 diabetes, chronic kidney disease or on dialysis, sickle cell disease, cancer, and immunocompromised state (weakened immune system). RESULTS: Overall, 20.0% of participants at baseline and 22.7% at follow-up reported not getting needed care. The most common reasons for being unable to get needed care included fear of COVID-19 (baseline: 44.1%; follow-up: 47.2%) and doctors canceled appointment (baseline: 25.3%; follow-up: 14.1%). Routine care (baseline: 59.9%; follow-up: 62.6%) and chronic care management (baseline: 31.5%; follow-up: 30.1%) were the most often reported types of delayed care. Fair/poor self-reported physical health was significantly associated with being unable to get needed care despite chronic condition status (≥ 1 chronic condition: aPR = 1.36, 95%CI = 1.04-1.78); no chronic conditions: aPR = 1.52, 95% CI = 1.28-1.80). The likelihood of inability to get needed care differed in some instances by race/ethnicity, age, and insurance status. For example, uninsured adults were more likely to not get needed care (≥ 1 chronic condition: aPR = 1.76, 95%CI = 1.17-2.66); no chronic conditions: aPR = 1.25, 95% CI = 1.00-1.56). CONCLUSIONS: Overall, about one fifth of participants reported being unable to receive needed care at baseline and follow-up. Delays in receiving needed medical care may exacerbate existing conditions and perpetuate existing health disparities among vulnerable populations who were more likely to have not received needed health care during the pandemic.
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COVID-19 , Diabetes Mellitus Tipo 2 , Adulto , Humanos , Pandemias , COVID-19/epidemiologia , Doença Crônica , Acessibilidade aos Serviços de SaúdeRESUMO
BACKGROUND: Despite evidence of the impact of breastfeeding information on breastfeeding rates, it is unknown if information sources and impact vary by race/ethnicity, thus this study assessed race/ethnicity-specific associations between breastfeeding information sources and breastfeeding. METHODS: We used data from the 2016-2019 Pregnancy Risk Assessment Monitoring System. Race/ethnicity-stratified multinomial logistic regression was used to estimate associations between information source (e.g., family/friends) and breastfeeding rates (0 weeks/none, < 10 weeks, or ≥ 10 weeks; < 10 weeks and ≥ 10 weeks = any breastfeeding). All analyses were weighted to be nationally representative. RESULTS: Among 5,945,018 women (weighted), 88% reported initiating breastfeeding (≥ 10 weeks = 70%). Information from family/friends (< 10 weeks: aORs = 1.58-2.14; ≥ 10 weeks: aORs = 1.63-2.64) and breastfeeding support groups (< 10 weeks: aORs = 1.31-1.76; ≥ 10 weeks: aORs = 1.42-2.77) were consistently associated with breastfeeding and duration across most racial/ethnic groups; effects were consistently smaller among Alaska Native, Black, and Hispanic women (vs White women). Over half of American Indian and one-quarter of Black women reported not breastfeeding/stopping breastfeeding due to return to school/work concerns. CONCLUSIONS: Associations between breastfeeding information source and breastfeeding rates vary across race/ethnicity. Culturally tailored breastfeeding information and support from family/friends and support groups could help reduce breastfeeding disparities. Additional measures are needed to address disparities related to concerns about return to work/school.
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Aleitamento Materno , Etnicidade , Fonte de Informação , Feminino , Humanos , Gravidez , Aleitamento Materno/etnologia , Cuidado Pós-Natal , Estados UnidosRESUMO
As the number of cancer survivors continues to increase and given the shortage of oncology clinicians in safety net health care settings, primary care providers (PCPs) in these settings will increasingly provide cancer survivorship care. In order to ensure equitable care for low-income and underserved breast and colon cancer survivors, it is essential to understand the safety-net PCPs' perspective. We conducted semi-structured, in-depth qualitative interviews with 11 PCPs working in a safety-net health care system to identify their needs in caring for cancer survivors. Interviews were audio-recorded and professionally transcribed. Two coders independently coded the interviews and conducted regular meetings until we reached consensus on the results. Analysis was based in grounded theory and performed using the constant comparative method. Thematic analysis identified six themes as follows: (1) Cancer survivorship care can be integrated with the whole person and chronic disease care management that occurs in primary care; (2) PCPs' perceptions regarding patients' survivorship care needs and their confidence in meeting those needs; (3) preference for a shared care model; (4) coordination of care; (5) PCPs' need for survivorship care education and training; and (6) unique issues involved in the care of older cancer survivors. PCPs in the safety-net believe that providing comprehensive survivorship care requires coordination of care through the cancer continuum. Tools like checklists, electronic health records-based communication, and convenient electronic consultations with cancer specialists would enhance the quality of survivorship care. Respondents advocate the inclusion of survivorship care education in medical education. The continuity of care with PCPs means that they play a particularly important role in the care of older cancer survivors.
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Sobreviventes de Câncer , Neoplasias do Colo , Médicos de Atenção Primária , Humanos , Neoplasias do Colo/terapia , Atenção Primária à SaúdeRESUMO
Objectives. To determine the prevalence of COVID-19-related discrimination among major US racial/ethnic groups and estimate associations between discrimination, race/ethnicity, and other sociodemographic characteristics. Methods. We conducted a nationally representative online survey of 5500 American Indian/Alaska Native, Asian, Black/African American, Hawaiian/Pacific Islander, Latino (English and Spanish speaking), White, and multiracial adults from December 2020 to February 2021. Associations between sociodemographic characteristics and COVID-19-related discrimination were estimated via multinomial logistic regression. Results. A total of 22.1% of the participants reported experiencing discriminatory behaviors, and 42.7% reported that people acted afraid of them. All racial/ethnic minorities were more likely than White adults to experience COVID-19-related discrimination, with Asian and American Indian/Alaska Native adults being most likely to experience such discrimination (discriminatory behaviors: adjusted odd ratio [AOR] = 2.59; 95% confidence interval [CI] = 1.73, 3.89; and AOR = 2.67; 95% CI = 1.76, 4.04; people acting afraid: AOR = 1.54; 95% CI = 1.15, 2.07; and AOR = 1.84; 95% CI = 1.34, 2.51). Limited English proficiency, lower education, lower income, and residing in a big city or the East South Central census division also increased the prevalence of discrimination. Conclusions. COVID-19-related discrimination is common, and it appears that the pandemic has exacerbated preexisting resentment against racial/ethnic minorities and marginalized communities. Efforts are needed to minimize and discredit racially driven language and discrimination around COVID-19 and future epidemics. (Am J Public Health. 2022;112(3):453-466. https://doi.org/10.2105/AJPH.2021.306594).
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COVID-19/etnologia , Minorias Étnicas e Raciais/psicologia , Fatores Sociodemográficos , Adolescente , Adulto , Idoso , Feminino , Humanos , Idioma , Masculino , Pessoa de Meia-Idade , Prevalência , Racismo/psicologia , SARS-CoV-2 , Adulto JovemRESUMO
BACKGROUND: In the United States (U.S.), several states have laws that allow individuals to obtain driver's licenses regardless of their immigration status. Possession of a driver's license can improve an individual's access to social programs, healthcare services, and employment opportunities, which could lead to improvements in perceived mental and physical health among Latinos living in the U.S. METHODS: Using Behavioral Risk Factor Surveillance System data (2011-2019) for Latinos living in the U.S. overall (immigration status was not available), we compared the average number of self-reported perceived poor mental and physical health days/month, and general health status (single-item measures) before (January 2011-June 2013) and after implementation (July 2015-December 2019) of immigrant-inclusive license policies using interrupted time-series analyses and segmented linear regression, and a control group of states in which such policies were not implemented. We also compared the average number of adults reporting any perceived poor mental or physical health days (≥ 1 day/month) using a similar approach. RESULTS: One hundred twenty-three thousand eight hundred seven Latino adults were included; 66,805 lived in states that adopted immigrant-inclusive license policies. After implementation, average number of perceived poor physical health days significantly decreased from 4.30 to 3.80 days/month (immediate change = -0.64, 95% CI = -1.10 to -0.19). The proportion reporting ≥ 1 perceived poor physical and mental health day significantly decreased from 41 to 34% (OR = 0.89, 95% CI = 0.80-1.00) and from 40 to 33% (OR = 0.84, 95% CI = 0.74-0.94), respectively. CONCLUSIONS: Among all Latinos living in the U.S., immigrant-inclusive license policies were associated with fewer perceived poor physical health days per month and fewer adults experiencing poor physical and mental health. Because anti-immigrant policies can harm Latino communities regardless of immigration status and further widen health inequities, implementing state policies that do not restrict access to driver licenses based on immigrant status documentation could help address upstream drivers of such inequities.
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Emigrantes e Imigrantes , Licenciamento , Nível de Saúde , Hispânico ou Latino , Humanos , Políticas , Estados UnidosRESUMO
Racial/ethnic minority communities are experiencing an undue burden from coronavirus disease 2019 (COVID-19), and the availability of Food and Drug Administration (FDA) authorized vaccines is critical for improving population health. National surveys assessing vaccination willingness and reports of vaccination administration by race/ethnicity indicate at least two areas that warrant attention: elevated vaccine hesitancy among African American and Latino adults, and the need to ensure equitable access to vaccination. COVID-19 vaccine hesitancy is not uniform within racial/ethnic minority populations; yet, given the disproportionate impact, understandable distrust, and widespread misinformation, there is an imperative to overcome challenges associated with vaccination willingness and uptake, as well as implementation and access. This Perspective discusses the complexity of drivers for each of these areas, which include individual, community, and structural factors. It also highlights two initiatives at the National Institutes of Health. One is focused on addressing misinformation and distrust through academic-community partnerships, and the other on community-engaged behavioral interventions to address the population-specific reasons for COVID-19 vaccine hesitancy, support informed decision-making, and promote equitable access among populations with health disparities. For the foreseeable future, proactive and persistent efforts around COVID-19 mitigation strategies, including vaccination, will remain of paramount importance for health equity.
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COVID-19 , Vacinas , Vacinas contra COVID-19 , Etnicidade , Humanos , Grupos Minoritários , SARS-CoV-2RESUMO
BACKGROUND: Compared to their white counterparts, Latina breast cancer survivors experience poorer quality of care and worse health-related quality of life. Limited English proficiency (LEP) and patient engagement in cancer care could help explain these disparities. We assessed associations between LEP status and difficulty engaging with physicians, with self-reported quality of breast cancer care and health-related quality of life (physical and emotional well-being) among rural and urban Latina breast cancer survivors. METHODS: Analyses used cross-sectional baseline survey data from two studies that tested a stress management program among rural and urban Latina breast cancer survivors in California. Medical information was collected through medical records review. Linear regression models examined bivariate and multivariable associations of LEP status (yes or no), difficulty engaging with doctors (asking questions and participating in treatment decisions) (1-4; higher score = greater difficulty), and rural versus urban site, with three outcomes: (1) quality of breast cancer care and information; (2) physical well-being; and (3) and emotional well-being, controlling for demographic and medical factors. RESULTS: The total sample included 304 women (151 from urban and 153 from rural sites). Mean age was 52.7 years (SD 10.9). Most were limited English proficient (84.5%) and had less than a high school education (67.8%). Difficulty engaging with doctors was inversely associated with patient ratings of quality of breast cancer care and information (B = - 0.190, p = 0.014), emotional well-being (B = - 1.866, p < 0.001), and physical well-being (B = - 1.272, p = 0.002), controlling for demographic and treatment factors. LEP (vs. not; B = 1.987, p = 0.040) was independently associated with physical well-being only. Rural/urban status was not related independently to any outcome. CONCLUSIONS: Rural and urban Latina breast cancer survivors who report greater difficulty engaging with physicians experienced worse quality of breast cancer care and health-related quality of life. Promoting greater engagement of Latina breast cancer survivors in cancer care and providing medical interpreters when needed could improve patient outcomes among this vulnerable group. TRIAL REGISTRATION: http://www.ClinicalTrials.gov identifier NCT02931552 and NCT01383174.
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Neoplasias da Mama , Sobreviventes de Câncer , Neoplasias da Mama/terapia , Estudos Transversais , Feminino , Hispânico ou Latino , Humanos , Pessoa de Meia-Idade , Participação do Paciente , Qualidade de VidaRESUMO
BACKGROUND: Among U.S. adults with physician-diagnosed arthritis, we examined the association of 1) participant race/ethnicity with meeting physical activity guidelines and arthritis symptoms, and 2) the association of receipt of a physician exercise recommendation with physical activity levels and arthritis symptoms, and whether race/ethnicity moderates these associations. METHODS: Retrospective, cross-sectional study of National Health Interview Survey pooled data from 2002, 2006, 2009, and 2014 from 27,887 U.S. adults aged ≥18 years with arthritis. Outcomes were meeting aerobic (yes/no) and strengthening guidelines (yes/no), arthritis-associated activity limitations (yes/no) and arthritis-related pain (0-10; higher score = more pain). Predictors were race/ethnicity (White, African American, Latino, and Asian) and receipt of physician recommendation for exercise (yes/no). Covariates included demographic and health characteristics. RESULTS: Adjusting for covariates, African Americans were more likely (AOR = 1.27; 95% CI 1.12, 1.43) and Asians were less likely (AOR = 0.75; 95% CI 0.61, 0.92) than Whites to meet muscle strengthening activity guidelines. Compared to Whites, African Americans (B = 0.48; 95% CI 0.24, 0.72) and Latinos (B = 0.44; 95% CI 0.15, 0.72) reported more severe, while Asians reported less severe (B = -0.68; 95% CI -1.22, - 0.14) joint pain. Controlling for covariates, physician exercise recommendation was associated with meeting aerobic (AOR = 1.20; 95% CI 1.11, 1.30) and strengthening (AOR = 1.21; 95% CI 1.11, 1.33) guidelines, regardless of race/ethnicity except for a weak negative association with meeting strengthening guidelines (AOR = 0.85; CI 0.74-0.99) among Latinos. CONCLUSIONS: Disparities in pain exist for African Americans and Latinos with arthritis. Physician exercise recommendation is critical among patients with arthritis to relieve symptom burden.
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Artrite , Médicos , Adolescente , Adulto , Artrite/epidemiologia , Artrite/terapia , Estudos Transversais , Etnicidade , Exercício Físico , Hispânico ou Latino , Humanos , Estudos RetrospectivosRESUMO
OBJECTIVE: We report results of a community-based multisite, randomized controlled trial of Nuevo Amanecer (NA-II), a 10-week stress management program for rural, low literacy Latina breast cancer survivors. METHODS: Trained peers delivered NA-II to Spanish-speaking Latinas with non-metastatic breast cancer in three rural communities. Women were randomized to receive the program immediately or wait 6 months. Assessments were conducted at baseline, 3 months, and 6 months. Primary outcomes were breast cancer-specific quality of life domains; secondary outcomes included general distress symptoms and stress management skills. Intention-to-treat analyses using repeated-measures linear regression models estimated changes in slope between groups. RESULTS: Of 153 participants (76 randomized to intervention, 77 to control group), 92% were retained at 6 months. Mean age was 54.8 years (SD = 10.5); 80% had less than high school education. There were no statistically significant treatment × time effects on quality of life. Compared to women in the control group, intervention group women reported greater improvements in anxiety at 6 months (-0.20 vs -0.02, P = .049; range 0-4) as well as three stress management skills: relaxation at 3 months (+0.98 vs -0.07, P < .0001; range 0-4) and 6 months (+0.82 vs +0.04, P < .001), awareness of tension at 3 months (+0.31 vs -0.19, P < .01; range 0-4) and 6 months (+0.29 vs -0.11, P < .05), and coping confidence at 3 months (+0.12 vs -0.23, P < .01; range 0-4). CONCLUSIONS: Stress management programs delivered by trained peers in rural community settings can reduce anxiety and improve stress management skills among Latina breast cancer survivors.
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Ansiedade/prevenção & controle , Sobreviventes de Câncer/psicologia , Terapia Cognitivo-Comportamental/métodos , Hispânico ou Latino/psicologia , Qualidade de Vida/psicologia , Estresse Psicológico/prevenção & controle , Adaptação Psicológica , Adulto , Ansiedade/psicologia , Neoplasias da Mama/psicologia , Neoplasias da Mama/terapia , Participação da Comunidade , Aconselhamento/métodos , Feminino , Humanos , Pessoa de Meia-Idade , Grupo Associado , População Rural/estatística & dados numéricos , Estresse Psicológico/psicologiaRESUMO
BACKGROUND: Primary care providers (PCPs) are critical to the provision of comprehensive care for cancer survivors, yet there is very little data on the practices and quality of survivorship care occurring in safety net primary care settings. This study aimed to assess the knowledge and attitudes of PCPs and preferences for care models for breast and colon cancer survivors in a safety net health network. METHODS: A modified National Cancer Institute Survey of Physician Attitudes Regarding the Care of Cancer Survivors was sent electronically to 220 PCPs in 12 primary care clinics in the San Francisco Health Network affiliated with Zuckerberg San Francisco General Hospital and Trauma Center. RESULTS: The response rate was 50% (110/220). About half of PCPs strongly/somewhat agreed (vs. strongly/somewhat disagreed) that PCPs have the knowledge needed to provide follow-up care related to breast (50%) and colon cancer (54%). Most providers (93%) correctly reported recommended frequency of mammography, however, frequency of blood tests and other imaging surveillance were not as well recognized for breast or colon cancer. Recognition of long-term side effects of chemotherapy drugs ranged from 12% for oxaliplatin to 44% for doxorubicin. Only 33% of providers reported receiving any survivorship training. The most preferred model for survivorship care was shared care model (40%). CONCLUSIONS: Safety net PCPs prefer a shared care model for care of cancer survivors but are limited by lack of training, poor communication, and poor delineation of roles. Patient-centered survivorship care can be improved through effective oncologist-PCP-patient partnerships and coordination.
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Neoplasias da Mama/reabilitação , Sobreviventes de Câncer , Neoplasias do Colo/reabilitação , Assistência ao Convalescente , Atitude do Pessoal de Saúde , Neoplasias da Mama/diagnóstico , Neoplasias do Colo/diagnóstico , Continuidade da Assistência ao Paciente , Feminino , Humanos , Conhecimento , Masculino , Pessoa de Meia-Idade , Médicos de Atenção Primária/psicologia , Médicos de Atenção Primária/normas , Médicos de Atenção Primária/estatística & dados numéricos , Atenção Primária à Saúde/métodos , Atenção Primária à Saúde/normas , Atenção Primária à Saúde/estatística & dados numéricos , São Francisco , Autoeficácia , Inquéritos e QuestionáriosRESUMO
PURPOSE: The role of mobile health (mHealth) technology in cancer care has evolved alongside the rapid development in digital technology. Its use can come with significant potential benefits; however, such use may also be associated with risks. This paper summarizes the latest developments around mHealth use in cancer care presented by a panel of experts at the 2019 Annual Meeting of the Multinational Association of Supportive Care in Cancer. METHODS: Through lectures, case studies, and panel discussions, speakers and participants (including cancer specialist doctors, nurses, and allied health professionals) evaluated current and emerging mHealth methods for supportive care in cancer survivorship. Focus areas and special considerations were agreed upon by consensus. RESULTS: Three focus areas for the use of mHealth in cancer care were identified: activation and support of self-management, exercise oncology, and enablement of survivorship care delivery. In addition to these focus areas, two special considerations were highlighted: technology-enhanced supportive cancer care for disparate populations, and ethical considerations relevant to the use of technology in supportive care. CONCLUSION: mHealth has the potential to revolutionize and transform cancer care delivery. Future research should guide further advances in the use of technology in supportive cancer care and carefully explore the safety, efficacy, cost-effectiveness, and implementation of interventions delivered through mHealth platforms.
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Atenção à Saúde/métodos , Neoplasias/terapia , Telemedicina/métodos , História do Século XXI , HumanosRESUMO
BACKGROUND: Although the family caregiver workforce is increasingly diverse, little is known about culturally and linguistically diverse caregivers and patients for whom they care. Caregiver roles include communicating with health care teams on behalf of patients with language barriers. OBJECTIVE: Our objective is to describe characteristics and experiences of caregivers for patients with limited English proficiency (LEP) immediately following hospital discharge. DESIGN: Cross-sectional. PARTICIPANTS: Primary informal caregivers for Chinese- and Spanish-speaking patients with LEP discharged from a large academic medical center's orthopedic surgery, general surgery, and cardiovascular inpatient floors from June 2012 to August 2013. MAIN MEASURES: Bilingual-bicultural research assistants conducted baseline structured interviews with patients or surrogates in the hospital, and 3 weeks after discharge, gathering demographic and health information. They then interviewed by phone informal caregivers, identified by patients, to determine caregiving experiences. KEY RESULTS: One hundred fifty-eight caregivers were interviewed post-discharge. Two-thirds (69.0%) were adults caring for parents or grandparents, and 20.9% were spouses or partners. Sixty-nine (43.7%) caregivers had LEP themselves, yet only 12% of patients reported having access to professional interpreters at the time discharge instructions were provided. Ninety percent reported performing three or more caregiving roles for the patient (helping at home, helping with medical decisions, helping with medical forms, helping communicate with medical staff, and talking with doctors about medical care). Forty percent reported moderate/high levels of perceived stress (some, most, or all of the time) caring for the patient. Multivariate regression revealed caregivers for Chinese-speaking patients, and those for patients discharged to another hospital were most likely to report moderate/high levels of perceived stress. CONCLUSION: Culturally and linguistically diverse caregivers perform multiple roles caring for patients with LEP, often have LEP themselves, and experience notable levels of stress. These results also demonstrate an opportunity to expand the use of professional interpreters at hospital discharge to avoid communication errors.
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Cuidadores/tendências , Serviços de Assistência Domiciliar/tendências , Hospitalização/tendências , Proficiência Limitada em Inglês , Multilinguismo , Transferência de Pacientes/tendências , Adulto , Assistência ao Convalescente/normas , Assistência ao Convalescente/tendências , Idoso , Idoso de 80 Anos ou mais , Cuidadores/psicologia , Cuidadores/normas , Estudos Transversais , Feminino , Seguimentos , Serviços de Assistência Domiciliar/normas , Humanos , Masculino , Pessoa de Meia-Idade , Alta do Paciente/normas , Alta do Paciente/tendências , Transferência de Pacientes/normas , Adulto JovemRESUMO
Many evidence-based interventions (EBIs) have been developed to prevent or treat major health conditions. However, many EBIs have exhibited limited adoption, reach, and sustainability when implemented in diverse community settings. This limitation is especially pronounced in low-resource settings that serve health disparity populations. Often, practitioners identify problems with existing EBIs originally developed and tested with populations different from their target population and introduce needed adaptations to make the intervention more suitable. Although some EBIs have been extensively adapted for diverse populations and evaluated, most local adaptations to improve fit for health disparity populations are not well documented or evaluated. As a result, empirical evidence is often lacking regarding the potential effectiveness of specific adaptations practitioners may be considering. We advocate an expansion in the emphasis of adaptation research from researcher-led interventions to research that informs practitioner-led adaptations. By presenting a research vision and strategies needed to build this area of science, we aim to inform research that facilitates successful adaptation and equitable implementation and delivery of EBIs that reduce health disparities.
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Prática Clínica Baseada em Evidências , Disparidades em Assistência à Saúde/etnologia , Médicos , Humanos , Saúde das Minorias , Projetos de PesquisaRESUMO
OBJECTIVE: Intrusive thoughts, defined as unwanted and recurrent thoughts about a stressful experience, are associated with psychological distress in women with breast cancer. This study assessed moderating effects of various social support dimensions on associations between intrusive thoughts and psychological distress among Latina breast cancer survivors. METHODS: We used baseline data from a randomized controlled trial of a stress management intervention delivered to 151 Spanish-speaking Latinas with nonmetastatic breast cancer within 1 year of diagnosis. Intrusive thoughts, four dimensions of social support (emotional/informational, tangible, affectionate, and positive social interaction), and symptoms of anxiety and depression were assessed through in-person interviews. Information on age, time since diagnosis, breast cancer variables, history of depression, and marital status served as covariates. Generalized linear models were used to investigate bivariate and multivariate associations and to explore moderation effects of the four dimensions of social support. RESULTS: In bivariate models, intrusive thoughts were associated positively with depression (ß = .024, .001) and anxiety (ß = .047, P < .001) symptoms. Adjusting for other factors, intrusive thoughts remained associated with depression symptoms (ß = .022, .008), regardless of level of social support (for all support dimensions). For anxiety, there were significant interactions of tangible (ß = -.013, .034) and affectionate (ß = -.022, .005) support with intrusive thoughts. Intrusive thoughts were associated more strongly with anxiety symptoms among women reporting less tangible and affectionate support than those with higher levels of these types of support. CONCLUSIONS: Tangible and affectionate support have protective effects on anxiety symptoms among Spanish-speaking Latina breast cancer survivors experiencing intrusive thoughts, but not depression symptoms.
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Ansiedade/etnologia , Neoplasias da Mama/etnologia , Sobreviventes de Câncer/psicologia , Hispânico ou Latino/psicologia , Apoio Social , Pensamento , Adulto , Idoso , Idoso de 80 Anos ou mais , Ansiedade/psicologia , Neoplasias da Mama/psicologia , Sobreviventes de Câncer/estatística & dados numéricos , Depressão/etnologia , Depressão/psicologia , Feminino , Hispânico ou Latino/estatística & dados numéricos , Humanos , Idioma , Pessoa de Meia-Idade , Fatores de ProteçãoRESUMO
In 2016, the UC Davis Latino Aging Research Resource Center and UC Davis Alzheimer's Disease Center brought together experts from across the country to consolidate current knowledge and identify future directions in aging and diversity research. This report disseminates the research priorities that emerged from this conference, building on an earlier Gerontological Society of America preconference. We review key racial/ethnic differences in cognitive aging and dementia and identify current knowledge gaps in the field. We advocate for a systems-level framework for future research whereby environmental, sociocultural, behavioral, neuropathological, genetic, and psychometric levels of analysis are examined together to identify pathways and mechanisms that influence disparities. We then discuss steps to increase the recruitment and retention of racial/ethnic minorities in aging studies, as none of the recommendations will be possible without strong collaboration between racial/ethnic minority communities and researchers. This approach is consistent with the National Institute on Aging Health Disparities Research Framework.
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Envelhecimento , Doença de Alzheimer , Pesquisa Biomédica , Grupos Minoritários , Grupos Raciais , Doença de Alzheimer/epidemiologia , Doença de Alzheimer/etnologia , Disparidades nos Níveis de Saúde , Hispânico ou Latino , Humanos , Seleção de Pacientes , Estados UnidosRESUMO
BACKGROUND: Methods for translating evidence-based behavioral interventions into real-world settings seldom account for the special issues in reaching health disparity populations. MAIN TEXT: The objective of this article is to describe an innovative "transcreational" framework for designing and delivering interventions in communities to reduce health disparities. We define transcreation as the process of planning, delivering, and evaluating interventions so that they resonate with the community experiencing health disparities, while achieving intended health outcomes. The Transcreation Framework for Community-engaged Behavioral Interventions to Reduce Health Disparities comprises seven steps: 1) identify community infrastructure and engage partners; 2) specify theory; 3) identify multiple inputs for new program; 4) design intervention prototype; 5) design study, methods, and measures for community setting; 6) build community capacity for delivery; and 7) deliver transcreated intervention and evaluate implementation processes. Communities are engaged from the start and interventions are delivered by community-based interventionists and tested in community settings. The framework applies rigorous scientific methods for evaluating program effectiveness and implementation processes. It incorporates training and ongoing technical assistance to assure treatment fidelity and build community capacity. CONCLUSIONS: This framework expands the types of scientific evidence used and balances fidelity to evidence and fit to the community setting. It can guide researchers and communities in developing and testing behavioral interventions to reduce health disparities that are likely to be sustained because infrastructure development is embedded in the research.
Assuntos
Serviços de Saúde Comunitária/organização & administração , Acessibilidade aos Serviços de Saúde/organização & administração , Disparidades nos Níveis de Saúde , Disparidades em Assistência à Saúde/estatística & dados numéricos , Prática Clínica Baseada em Evidências , Humanos , Avaliação de Programas e Projetos de SaúdeRESUMO
Health literacy is a dynamic construct that changes with specific health conditions; thus, new disease-specific health literacy tools are needed. Since cancer is the leading cause of death among Latinos, the largest and fastest-growing minority population in the nation, there is a need to develop tools to assess cancer health literacy (CHL) among the Spanish-speaking population. The Cancer Health Literacy Test, Spanish version (CHLT-30-DKspa) was applied to identify Spanish-speaking individuals with low CHL and ascertain which items in the tool best discriminate between CHL level groups. Cross-sectional field test of the CHLT-30-DKspa among Spanish-speaking Latinos. Latent class analysis (LCA) identified participants with varying CHL levels. Probability of correct answers, odds ratios, and standardized errors were used to identify the items that allow the classification of individuals among the latent classes. LCA resulted in a three-latent-class model predicting 39.4% of participants to be in the HIGH class, 43.3% in the MEDIUM class, and 17.3% in the LOW class. Eleven items (the CHLT-11-DKspa) meet the criteria to clearly separate participants with HIGH and LOW classes of CHL. Although the best model fit was a three-class solution, results showed a clear separation of individuals from HIGH versus LOW levels of CHL, but separation of those in the MEDIUM level was not as clear. The CHLT-11-DKspa is a shorter measure that may be relatively easy to use in a clinical encounter to identify Spanish-speaking patients with the poorest levels of CHL who may require additional support to understand medical instructions and care plans.
Assuntos
Avaliação Educacional , Conhecimentos, Atitudes e Prática em Saúde , Letramento em Saúde/estatística & dados numéricos , Hispânico ou Latino/educação , Neoplasias/prevenção & controle , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/diagnóstico , PobrezaRESUMO
Information is needed on implementation processes involved in translating evidence-based interventions (EBIs) into health disparity communities. In an RCT, Nuevo Amanecer, a cognitive-behavioral stress management (CBSM) program delivered by breast cancer survivors (compañeras) in community settings to Spanish-speaking Latina breast cancer survivors, was effective in improving quality of life and decreasing breast cancer concerns and depressive and bodily symptoms. Using mixed methods, we evaluated the processes of implementing Nuevo Amanecer. Program delivery was assessed by direct observation. Treatment receipt was assessed by participants' mastery and homework completion. Perceived benefits, quality, ease of use, usefulness of components, and suggested improvements were evaluated through participant surveys and semi-structured interviews of participants and compañeras. Eighty percent of women completed six or more of eight sessions. Observer ratings of program delivery indicated compañeras demonstrated fidelity 80-90% of the time for three components (e.g., following the manual), but only 10% for two components (e.g., modeling skills). Regarding treatment receipt, most participants completed all homework. Knowledge and skills mastery was high (mostly >85%). In program evaluations, 93% indicated the program helped them cope with breast cancer "quite a bit/extremely." Participants reported improved self-management skills and knowledge. Suggested improvements were to add more sessions to practice cognitive-behavioral coping skills and simplify exercises and homework. We conclude that CBSM programs can be delivered in community settings by trained peers with high fidelity, acceptability, and perceived usefulness. Results provided some areas where the program could be improved. Our rigorous evaluation illustrates methods for evaluating processes of translating EBIs for community implementation. TRIAL REGISTRATION: NCT01383174 (ClinicalTrials.gov).