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1.
Eur Heart J ; 45(21): 1877-1886, 2024 Jun 01.
Artigo em Inglês | MEDLINE | ID: mdl-38190428

RESUMO

BACKGROUND AND AIMS: Severe aortic stenosis (AS) is the guideline-based indication for aortic valve replacement (AVR), which has markedly increased with transcatheter approaches, suggesting possible increasing AS incidence. However, reported secular trends of AS incidence remain contradictory and lack quantitative Doppler echocardiographic ascertainment. METHODS: All adults residents in Olmsted County (MN, USA) diagnosed over 20 years (1997-2016) with incident severe AS (first diagnosis) based on quantitatively defined measures (aortic valve area ≤ 1 cm2, aortic valve area index ≤ 0.6 cm2/m2, mean gradient ≥ 40 mmHg, peak velocity ≥ 4 m/s, Doppler velocity index ≤ 0.25) were counted to define trends in incidence, presentation, treatment, and outcome. RESULTS: Incident severe AS was diagnosed in 1069 community residents. The incidence rate was 52.5 [49.4-55.8] per 100 000 patient-year, slightly higher in males vs. females and was almost unchanged after age and sex adjustment for the US population 53.8 [50.6-57.0] per 100 000 residents/year. Over 20 years, severe AS incidence remained stable (P = .2) but absolute burden of incident cases markedly increased (P = .0004) due to population growth. Incidence trend differed by sex, stable in men (incidence rate ratio 0.99, P = .7) but declining in women (incidence rate ratio 0.93, P = .02). Over the study, AS clinical characteristics remained remarkably stable and AVR performance grew and was more prompt (from 1.3 [0.1-3.3] years in 1997-2000 to 0.5 [0.2-2.1] years in 2013-16, P = .001) but undertreatment remained prominent (>40%). Early AVR was associated with survival benefit (adjusted hazard ratio 0.55 [0.42-0.71], P < .0001). Despite these improvements, overall mortality (3-month 8% and 3-year 36%), was swift, considerable and unabated (all P ≥ .4) throughout the study. CONCLUSIONS: Over 20 years, the population incidence of severe AS remained stable with increased absolute case burden related to population growth. Despite stable severe AS presentation, AVR performance grew notably, but while declining, undertreatment remained substantial and disease lethality did not yet decline. These population-based findings have important implications for improving AS management pathways.


Assuntos
Estenose da Valva Aórtica , Humanos , Estenose da Valva Aórtica/epidemiologia , Masculino , Feminino , Incidência , Idoso , Pessoa de Meia-Idade , Minnesota/epidemiologia , Idoso de 80 Anos ou mais , Substituição da Valva Aórtica Transcateter/tendências , Substituição da Valva Aórtica Transcateter/estatística & dados numéricos , Ecocardiografia Doppler , Implante de Prótese de Valva Cardíaca/tendências , Implante de Prótese de Valva Cardíaca/estatística & dados numéricos , Índice de Gravidade de Doença , Resultado do Tratamento
2.
J Infect Dis ; 2024 Apr 24.
Artigo em Inglês | MEDLINE | ID: mdl-38656998

RESUMO

BACKGROUND: Understanding the association between the immune response and the risk of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection has implications for forthcoming prevention strategies. We evaluated the association between antibody titers and the risk of infection for the general population during the Omicron-dominant phase. METHODS: This was a prospective cohort study of residents or people affiliated with institutions in Bizen City, which included 1,899 participants. We measured the titers of antibodies against SARS-CoV-2 repeatedly every 2 months from June 2022 to March 2023. Infection status was obtained from self-reported questionnaires and the official registry. We estimated risk ratios (RRs) for infection within 2 months of the date of each antibody measurement with 95% confidence intervals (CIs) based on antibody titer categories and spline functions. RESULTS: Compared with the <2,500 arbitrary unit (AU)/mL category, the 2,500-5,000, 5,000-10,000, and ≥10,000 AU/mL categories had adjusted RRs (95% CI) of 0.81 (0.61-1.08), 0.51 (0.36-0.72), and 0.41 (0.31-0.54), respectively. The spline function showed a non-linear relationship between antibody titer and risk. CONCLUSIONS: Higher antibody titers were associated with a lower risk. We demonstrate the usefulness of measuring an antibody titers to determine the appropriate timing for future vaccination.

3.
Breast Cancer Res ; 26(1): 8, 2024 01 11.
Artigo em Inglês | MEDLINE | ID: mdl-38212792

RESUMO

BACKGROUND: To understand the dynamics that limit use of risk-management options by women at high risk of breast cancer, there is a critical need for research that focuses on patient perspectives. Prior research has left important gaps: exclusion of high-risk women not in risk-related clinical care, exclusion of non-white populations, and lack of attention to the decision-making processes that underlie risk-management choices. Our objective was to create a more inclusive dataset to facilitate research to address disparities related to decision making for breast cancer risk management. METHODS: The Daughter Sister Mother Project survey collects comprehensive information about the experiences of women at high risk of breast cancer. We collected novel measures of feelings about and reactions to cancer screenings; knowledge, barriers, and facilitators of risk-management options; beliefs related to cancer risk and risk management; and involvement with loved ones who had cancer. Eligible individuals were non-Hispanic white and non-Hispanic Black adult women who self-identified as having high risk of breast cancer and had no personal history of cancer. Between October 2018 and August 2019, 1053 respondents completed the online survey. Of these, 717 were confirmed through risk prediction modeling to have a lifetime breast cancer risk of ≥ 20%. Sociodemographic characteristics of this sample were compared to those of nationally representative samples of the US population: the 2019 Health Information National Trends Survey and the Pew Research Center report: Jewish Americans in 2020. RESULTS: The sample of 717 women at objectively high risk of breast cancer was largely (95%) recruited from non-clinical sources. Of these respondents, only 31% had seen a genetic counselor, 34% had had genetic testing specific to breast cancer risk, and 35% had seen at least one breast or cancer care specialist. The sample includes 35% Black respondents and 8% with Ashkenazi Jewish ancestry. Although encompassing a substantial range of ages, incomes, and education levels, respondents are overall somewhat younger, higher-income, and more educated than the US population as a whole. CONCLUSIONS: The DSM dataset offers comprehensive data from a community-based, diverse sample of women at high risk of breast cancer. The dataset includes substantial proportions of Black and Ashkenazi Jewish women and women who are not already in clinical care related to their breast cancer risk. This sample will facilitate future studies of risk-management behaviors among women who are and are not receiving high-risk care, and of variations in risk-management experiences across race and ethnicity.


Assuntos
Neoplasias da Mama , Adulto , Humanos , Feminino , Neoplasias da Mama/epidemiologia , Neoplasias da Mama/genética , Mães , Núcleo Familiar , Inquéritos e Questionários , Gestão de Riscos
4.
Oncologist ; 29(7): 629-637, 2024 Jul 05.
Artigo em Inglês | MEDLINE | ID: mdl-38652165

RESUMO

INTRODUCTION: The objective of this study was to comprehensively understand the burden experienced by caregivers (CGs) providing home-based, end-of-life care to patients with cancer. We examined the relationship between objective and subjective burden including whether and how burden changes over time. METHODS: A case series of terminal cancer patient-caregiver dyads (n = 223) were recruited from oncology clinics and followed for 12 months or until patient death. Data were collected every other week and in-person from CGs in their homes using quantitative surveys, diaries, and monthly structured observations. RESULTS: Bivariate correlations revealed a significant association between subjective burden and activities of daily living (ADLs), instrumental activities of daily living (IADL), high-intensity tasks, and time spent on ADLs; these correlations varied over time. Models examining the slope of subjective burden revealed little systematic change; spouse caregiver and patient functional limitations were positively, and Black caregiver was negatively associated with subjective burden. Generally, the slopes for measures of objective burden were significant and positive. Models showed subjective burden was positively associated with most measures of objective burden both within caregiver (concurrent measures were positively associated) and between CGs (those with higher subjective also had higher objective). CONCLUSIONS: Cancer caregiving is dynamic; CGs must adjust to the progression of the patient's disease. We found an association between subjective and objective burden both within and between CGs. Black CGs were more likely to report lower subjective burden compared to their White counterparts. More detailed investigation of the sociocultural components that affect caregiver experience of burden is needed to better understand how and where to best intervene with targeted supportive care services.


Assuntos
Atividades Cotidianas , Cuidadores , Neoplasias , Humanos , Neoplasias/psicologia , Masculino , Feminino , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , Pessoa de Meia-Idade , Idoso , Assistência Terminal/psicologia , Efeitos Psicossociais da Doença , Adulto , Sobrecarga do Cuidador/psicologia , Idoso de 80 Anos ou mais
5.
Annu Rev Public Health ; 45(1): 47-67, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38109515

RESUMO

Participatory approaches to implementation science (IS) offer an inclusive, collaborative, and iterative perspective on implementing and sustaining evidence-based interventions (EBIs) to advance health equity. This review provides guidance on the principles and practice of participatory IS, which enables academic researchers, community members, implementers, and other actors to collaboratively integrate practice-, community-, and research-based evidence into public health and health care services. With a foundational focus on supporting academics in coproducing knowledge and action, participatory IS seeks to improve health, reduce inequity, and create transformational change. The three main sections of this review provide (a) a rationale for participatory approaches to research in implementation science, (b) a framework for integrating participatory approaches in research utilizing IS theory and methods, and (c) critical considerations for optimizing the practice and impact of participatory IS. Ultimately, participatory approaches can move IS activities beyond efforts to make EBIs work within harmful systems toward transformative solutions that reshape these systems to center equity.


Assuntos
Pesquisa Participativa Baseada na Comunidade , Equidade em Saúde , Ciência da Implementação , Equidade em Saúde/organização & administração , Humanos , Pesquisa Participativa Baseada na Comunidade/organização & administração , Prática Clínica Baseada em Evidências/organização & administração
6.
Cancer Causes Control ; 35(3): 405-416, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37812335

RESUMO

PURPOSE: E-cigarettes are the most commonly used tobacco product among youth in the United States. Yet evidence-based prevention programming is limited due to the rapid onset of this threat. Community-based efforts to address vaping largely target youth in school settings. Although parents can play an important role in youth tobacco control efforts, messages about the dangers of vaping, use among adolescents, and strategies for intervening have not reached many Spanish-speaking parents in low-income Latinx communities. Our community-academic team developed e-cigarette prevention programming for use by promotor/as de salud to address this unmet need. METHODS: During the 1-year project, the team worked closely with a Project Advisory Committee to: review existing evidence-informed materials; conduct focus groups with parents, youth and promotor/as to guide program development; develop a curriculum to prepare promotor/as to educate low-literacy, Spanish-speaking parents about vaping; craft Spanish language resources for promotor/as to use in community education sessions; train 61 promotor/as to deliver the program; and support program delivery to 657 community members. RESULTS: Focus groups with promotor/as and community members, key-informant interviews, and brief surveys informed program development and assessment. Community member feedback was essential to development of appropriate materials. Promotor/as demonstrated significant pre- to post- training increases in e-cigarette knowledge and confidence in delivering vaping prevention education. Community members demonstrated a mastery of basic e-cigarette concepts and expressed intention to discuss vaping with their children. CONCLUSIONS: Promotor/a-led programming for parents represents a promising approach to vaping prevention and control in the Latinx community.


Assuntos
Sistemas Eletrônicos de Liberação de Nicotina , Produtos do Tabaco , Vaping , Adolescente , Criança , Humanos , Estados Unidos , Vaping/prevenção & controle , Hispânico ou Latino
7.
J Viral Hepat ; 31(2): 66-77, 2024 02.
Artigo em Inglês | MEDLINE | ID: mdl-38018328

RESUMO

Achieving hepatitic C virus (HCV) elimination requires linking people who use drugs (PWUD) into care. We report final direct-acting antivirals (DAAs)-based outcomes from the Integrated-Test-stage -Treat (ITTREAT) study. Project ITTREAT (2013-2021), based at an addiction centre, was a 'one-stop' service with innovative linkage to care strategies. Primary outcome was sustained virological response (SVR12) (intention to treat ITT) including whether individuals were recruited in first (period 1) versus last four (period 2 included the COVID-19 pandemic) years of the study. Number recruited were n = 765, mean age 40.9 ± 10.1 years, 78% males, history of current/past injecting drug use (IDU) and alcohol use being 77% and 90%, respectively. Prevalence of a positive HCV PCR was 84% with 19% having cirrhosis. Comparing those recruited in period 2 versus period 1, there was increasing prevalence of IDU, 90% versus 72% (p < .001); homelessness, 67% versus 50% (p < .001); psychiatric diagnosis, 84% versus 50% (p < .001); overdose history 71% versus 31% (p < .001), receiving opioid agonist treatment (OAT) 75% versus 52% (p < .001) and comorbidity 44% versus 25% (p < .001). Of those treated with DAAs (n = 272), ITT SVR rates were 86% (95% CI: 81%-90%), being similar in period 2 versus period 1. Predictors of non-SVR were receiving OAT (OR 0.33, 95% CI: 0.12-0.87, p = .025) and ≥80% adherence (OR 0.01, 95% CI: 0.003-0.041, p < .001). Reinfection rates period 2 versus period 1 (per 100 person-years) were 1.84 versus 1.70, respectively. In the treated cohort, mortality was 15%, being mostly drug-related. Despite increasing complexity of PWUD, high SVR12 rates are achievable with use of OAT and good adherence.


Assuntos
Hepatite C Crônica , Hepatite C , Abuso de Substâncias por Via Intravenosa , Masculino , Humanos , Adulto , Pessoa de Meia-Idade , Feminino , Hepacivirus/genética , Antivirais/uso terapêutico , Hepatite C Crônica/tratamento farmacológico , Hepatite C Crônica/epidemiologia , Pandemias , Hepatite C/tratamento farmacológico , Hepatite C/epidemiologia , Abuso de Substâncias por Via Intravenosa/epidemiologia
8.
Am J Med Genet A ; 194(8): e63564, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38528640

RESUMO

Turner syndrome (TS), caused by complete or partial loss of the second sex chromosome, is associated with complex medical manifestations. The TS community identifies anxiety as a major contributor to reduced quality of life. The study aimed to improve understanding of anxiety symptomatology, diagnosis, and care in individuals with TS. A mixed methods design integrated community engagement, including community leaders as co-investigators and a community advisory board, an online survey (N = 135), and in-depth interviews (N = 10). The majority of respondents reported that anxiety symptoms occur two or more days per week, with self-advocates reporting more frequent symptoms than caregivers (p = 0.03). Self-advocates reported feeling anxious more often at school/work; both rater groups reported anxiety-related behaviors were most likely to be expressed at home. Insomnia was the most common symptom of anxiety endorsed across age and rater groups (>70%). Anxiety symptoms and triggers changed with age and often were undiagnosed or untreated during childhood. Therapy and medication were reported as helpful by most respondents who had tried these strategies. Qualitative themes included: 'Triggers for anxiety are related to TS', 'Anxiety impacts the whole family', and 'Opportunities for early identification and intervention'.


Assuntos
Ansiedade , Qualidade de Vida , Síndrome de Turner , Humanos , Síndrome de Turner/psicologia , Síndrome de Turner/diagnóstico , Síndrome de Turner/terapia , Síndrome de Turner/genética , Síndrome de Turner/epidemiologia , Feminino , Ansiedade/diagnóstico , Ansiedade/psicologia , Adulto , Criança , Adolescente , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto Jovem , Masculino , Pré-Escolar , Cuidadores/psicologia , Idoso
9.
Cancer Control ; 31: 10732748241264711, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39095960

RESUMO

BACKGROUND: Breast cancer remains a leading cause of cancer morbidity and mortality worldwide. In the United States, Black women face significant disparities in screening mammograms, experience higher rates of breast cancer at advanced stages, and are more likely to die from the disease. AIMS: This study aimed to develop and beta-test a virtual health navigation program to enhance breast cancer care within the Black community. We identified barriers to utilizing virtual patient navigators and factors impacting the adoption of virtual navigation for breast cancer information among Black women. METHODS: The vCONET (Virtual Community Oncology Navigation and Engagement) intervention was delivered through the Second Life virtual platform. The informational content was collaboratively developed with community members. Participants engaged in an informational session on risk factors, mammography information, and preventive behaviors. Surveys (n = 18) and focus groups (n = 9) assessed knowledge and insights into perceptions. RESULTS: Findings revealed a positive impact of the intervention, with participants expressing increased knowledge and willingness to seek further information about breast cancer prevention, and highlighted the engaging nature of the virtual environment, while acknowledging potential technological challenges. CONCLUSION: Virtual health navigation shows promise in addressing breast cancer disparities by promoting awareness among Black women. Future efforts should optimize virtual navigation approaches through collaborative engagement for lasting impact, enhancing breast cancer care and equity in communities of color.


Assuntos
Negro ou Afro-Americano , Neoplasias da Mama , Navegação de Pacientes , Humanos , Feminino , Neoplasias da Mama/prevenção & controle , Navegação de Pacientes/organização & administração , Pessoa de Meia-Idade , Adulto , Estados Unidos , Idoso , Mamografia/métodos , Disparidades em Assistência à Saúde , Grupos Focais
10.
Am J Geriatr Psychiatry ; 32(5): 586-595, 2024 05.
Artigo em Inglês | MEDLINE | ID: mdl-38184422

RESUMO

OBJECTIVES: Collaborative care (CC) has demonstrated effectiveness for improving late-life depression in primary care, but clinics offering this service can find it challenging to address unmet social needs that may be contributing to their patients' depression. Clinics may benefit from better coordination and communication with community-based organizations (CBO) to strengthen depression treatment and to address unmet social needs. We evaluated the feasibility of adding a CBO to enhance standard collaborative care and the impact of such partnered care on older adults. DESIGN: Multisite, prepost evaluation. SETTING: Eight (n = 8) partnerships between primary care clinics and community-based organizations in California. PARTICIPANTS: A total of 707 depressed older adults (60 years or older) as evidenced by having a score of 10 or more on the Patient Health Questionnaire (PHQ-9) received care under the Care Partners project. INTERVENTION: A CBO partner was added to augment CC for late-life depression in primary care. MEASUREMENTS: The PHQ-9 was used to identify depressed older adults and to monitor depression symptom severity during a course of care. RESULTS: At baseline, the average PHQ-9 depression score across the partnerships was 15, indicating moderate depression severity. Participating patients saw an average 7-point reduction in their PHQ-9 score, baseline to last score assessed, with nearly half of all participants (48.4%) experiencing a 50% or greater improvement from their baseline score. CONCLUSIONS: Our findings suggest that partnering with a community-based organization is a feasible and effective way for primary care clinics to address late-life depression in their patients.


Assuntos
Depressão , Transtorno Depressivo , Humanos , Idoso , Depressão/terapia , Cuidadores , Melhoria de Qualidade , Transtorno Depressivo/terapia
11.
J Surg Oncol ; 129(8): 1507-1514, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38685712

RESUMO

Breast cancer remains a significant cause of death for women globally, despite advancements in detection and treatment, low- and middle-income countries face unique obstacles. Role of Research Working Group (RWG) can expedite research progress by fostering collaboration between scientists, clinicians, and stakeholders. Benefits of a Global RWG include pooling resources and expertise to develop new research ideas, addressing disparities, and building local research capacity, with the potential to improve breast cancer research and outcomes.


Assuntos
Pesquisa Biomédica , Neoplasias da Mama , Humanos , Neoplasias da Mama/terapia , Feminino , Saúde Global , Países em Desenvolvimento
12.
Prev Med ; 180: 107860, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38244932

RESUMO

OBJECTIVE: Exercise improves health, but illnesses can cause changes in exercise behavior, including starting or stopping. This study investigated the effects of chronic disease screening on inactive individuals' exercise behavior and analyzed the impact of age and chronic disease history on this relationship using stratified analysis. METHODS: Using a community-based prospective observational cohort design and data from the Changhua Community-Based Integrated Screening (CHCIS) dataset from 2005 to 2020, we examined 12,038 people who were screened at least twice and self-reported having never exercised at their first screening. Changes in exercise behavior were classified as "initiating exercise" and "remaining inactive." We obtained chronic disease screening results from CHCIS records, which included measurements of waist circumference, blood glucose, blood pressure, triglycerides, and high-density lipoproteins. SAS version 9.4 was used for COX proportional hazards regression. RESULTS: The findings indicated that abnormal waist circumference and blood pressure increased the likelihood of initiating exercise compared to normal results. Age stratification showed that those aged 40-49 with abnormal results were more likely to start exercising than normal participants, but not those under 40 or over 65. When stratified by chronic disease history, abnormal screening results correlated with exercise initiation only in groups without chronic disease history, except for those with a history of hyperlipidemia. CONCLUSIONS: This is the first study to demonstrate that abnormal screening results may influence exercise initiation in individuals who have never exercised, and this association varies by screening item, age, and disease history.


Assuntos
Comportamento Sedentário , Humanos , Estudos Prospectivos , Taiwan , Pressão Sanguínea/fisiologia , Doença Crônica
13.
Prev Med ; 185: 108050, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38906276

RESUMO

PURPOSE: Prevention efforts are critical to avoid the negative consequences of substance use in adolescents. This study aimed to examine national trends and sociodemographic differences in adolescents' participation in school-based substance use prevention (SUP) education, community-based SUP programs, as well as family conversations about substance use. METHODS: Publicly available data for adolescents aged 12-17 from the annual cross-sectional surveys of the National Survey on Drug Use and Health 2011-2019 were analyzed. RESULTS: Across the survey years, up to 74.9%, 12.2%, and 58.1% of adolescents reported having participated in school-based SUP education, community-based SUP programs, and family conversations about the danger of substance use in the past-year, respectively. From 2011 to 2019, statistically significant decreases were observed in adolescents' participation in school-based SUP education (OR = 0.97, 95% CI: 0.96, 0.98, p < 0.001) and community-based SUP programs (OR = 0.98, 95% CI: 0.97, 0.99, p < 0.001). Meanwhile, no significant changes were observed in adolescents' participation in family conversations about the dangers of substance use. Overall, lower levels of participation in school-based and community-based SUP programs were found in adolescents aged 16-17. Adolescents living in rural areas showed lower levels of participation in school-based SUP programs and family conversations about SUP. Racial/ethnic minority adolescents overall were less likely to participate in conversations with parents about SUP than Whites. CONCLUSIONS: Further development and implementation of developmentally appropriate, gender-specific, culturally sensitive, and contextually informed SUP programs at school, community, and family levels are needed.


Assuntos
Transtornos Relacionados ao Uso de Substâncias , Humanos , Adolescente , Masculino , Feminino , Transtornos Relacionados ao Uso de Substâncias/prevenção & controle , Estudos Transversais , Criança , Estados Unidos , Serviços de Saúde Escolar , Inquéritos e Questionários , Comportamento do Adolescente/psicologia
14.
Ann Fam Med ; 22(3): 215-222, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38806270

RESUMO

PURPOSE: The experience of ethnically diverse parents of children with serious illness in the US health care system has not been well studied. Listening to families from these communities about their experiences could identify modifiable barriers to quality pediatric serious illness care and facilitate the development of potential improvements. Our aim was to explore parents' perspectives of their children's health care for serious illness from Somali, Hmong, and Latin-American communities in Minnesota. METHODS: We conducted a qualitative study with focus groups and individual interviews using immersion-crystallization data analysis with a community-based participatory research approach. RESULTS: Twenty-six parents of children with serious illness participated (8 Somali, 10 Hmong, and 8 Latin-American). Parents desired 2-way trusting and respectful relationships with medical staff. Three themes supported this trust, based on parents' experiences with challenging and supportive health care: (1) Informed understanding allows parents to understand and be prepared for their child's medical care; (2) Compassionate interactions with staff allow parents to feel their children are cared for; (3) Respected parental advocacy allows parents to feel their wisdom is heard. Effective communication is 1 key to improving understanding, expressing compassion, and partnering with parents, including quality medical interpretation for low-English proficient parents. CONCLUSIONS: Parents of children with serious illness from Somali, Hmong, and Latin-American communities shared a desire for improved relationships with staff and improved health care processes. Processes that enhance communication, support, and connection, including individual and system-level interventions driven by community voices, hold the potential for reducing health disparities in pediatric serious illness.


Assuntos
Grupos Focais , Pais , Pesquisa Qualitativa , Humanos , Pais/psicologia , Feminino , Masculino , Somália/etnologia , Criança , Minnesota , Adulto , Adolescente , Pré-Escolar , Confiança , Pesquisa Participativa Baseada na Comunidade , Hispânico ou Latino/psicologia , Relações Profissional-Família , Pessoa de Meia-Idade , Asiático/psicologia , América Latina/etnologia , Lactente , Estado Terminal/psicologia , Estado Terminal/terapia
15.
Ann Fam Med ; 22(4): 333-335, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39038978

RESUMO

PURPOSE: This study marks the 50th anniversary of NAPCRG (formerly the North American Primary Care Research Group) by examining social connections among members. METHODS: This descriptive social network analysis was conducted via the Program to Analyze, Record, and Track Networks to Enhance Relationships (PARTNER) survey tool. RESULTS: Responses from 906 participants resulted in 1,721 individuals with 5,196 partner relationships. Most relationships (60%) were characterized as having an integrated level of collaboration. Many relationships led to a research paper (58%) or a grant (34%). CONCLUSIONS: This social network analysis of NAPCRG members' relationships described over 5,000 relationships, many producing publications, grants, and perceived advancements in primary care.


Assuntos
Atenção Primária à Saúde , Humanos , Apoio Social , Rede Social , Masculino , Feminino , Comportamento Cooperativo , Análise de Rede Social , Pesquisa sobre Serviços de Saúde , Inquéritos e Questionários
16.
AIDS Behav ; 28(1): 1-11, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37632605

RESUMO

This qualitative study reports on female sex workers' (FSWs) perceptions of the quality of antiretroviral therapy (ART) services they received as part of a community-based ART distribution intervention compared to services received by FSWs in the standard of care (SOC) arm. In-depth interviews were conducted with 24 participants to explore their perceptions of the quality of ART services. Data was analyzed using a quality-of-care framework that included but was not limited to, domains of accessibility, effective organization of care, package of services, and patient-centered care. Overall, FSWs in the intervention arm reported community-based ART services to be highly accessible, organized, and effective, and they highly valued the patient-centered care and high level of privacy. Community-based ART programs for FSWs can have high quality-of-care, which can have a positive effect on HIV treatment outcomes for FSWs.


Assuntos
Infecções por HIV , Profissionais do Sexo , Feminino , Humanos , Infecções por HIV/tratamento farmacológico , Tanzânia/epidemiologia , Ciência da Implementação , Serviços de Saúde Comunitária , Resultado do Tratamento
17.
Pediatr Blood Cancer ; 71(2): e30798, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38053230

RESUMO

BACKGROUND: Individual- and population-level socioeconomic disadvantages contribute to unequal outcomes among childhood cancer survivors. Reducing health disparities requires understanding experiences of survivors from historically marginalized communities, including those with non-English language preference. PROCEDURE: We partnered with a community-based organization (CBO) serving families of children with cancer in a rural region in California with low socioeconomic status and majority Hispanic/Latino (H/L) residents. We interviewed English- and Spanish-speaking adolescent/young adult (AYA) childhood cancer survivors (≥15 years old, ≥5 years from diagnosis), parents, and CBO staff to evaluate post-treatment needs and impact of CBO support. Data were analyzed qualitatively using applied thematic analysis. Themes were refined through team discussions with our community partners. RESULTS: Twelve AYAs (11 H/L, 11 bilingual), 11 parents (eight H/L, seven non-English preferred), and seven CBO staff (five H/L, five bilingual) participated. AYAs (five female, seven male) were of median (min-max) age 20 (16-32) and 9 (5-19) years post diagnosis; parents (nine female, two male) were age 48 (40-60) and 14 (6-23) years post child's diagnosis. Themes included challenges navigating healthcare, communication barriers among the parent-AYA-clinician triad, and lasting effects of childhood cancer on family dynamics and mental health. Subthemes illustrated that language and rurality may contribute to health disparities. CBO support impacted families by serving as a safety-net, fostering community, and facilitating H/L families' communication. CONCLUSIONS: Childhood cancer has long-lasting effects on families, and those with non-English language preference face additional burdens. Community-based support buffers some of the negative effects of childhood cancer and may reduce disparities.


Assuntos
Desigualdades de Saúde , Neoplasias , Adolescente , Adulto , Criança , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto Jovem , Família/psicologia , Hispânico ou Latino/psicologia , Neoplasias/terapia , Pais/psicologia , Pesquisa Qualitativa , Populações Vulneráveis , Fatores Socioeconômicos , Sobreviventes de Câncer
18.
AIDS Care ; 36(4): 508-516, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-37795685

RESUMO

Pre-exposure prophylaxis (PrEP) is an effective HIV prevention tool, recommended for persons at substantial risk for HIV, such as female sex workers (FSW) and men who have sex with men (MSM). We present Morocco's and the Middle East/North Africa's first PrEP demonstration project. Our pilot aimed to assess the feasibility and acceptability of a community-based PrEP program for FSW and MSM in Morocco's highest HIV prevalence cities: Agadir, Marrakech, and Casablanca. From May to December 2017, 373 eligible participants engaged in a 5-9 month program with daily oral TDF/FTC and clinic visits. Of these, 320 initiated PrEP, with 119 retained until the study's end. We report an 86% PrEP uptake, 37% overall retention, and 78% retention after 3 months. No seroconversions occurred during follow-up. These results underscore PrEP's need and acceptability among MSM and FSW and demonstrate the effectiveness of a community-based PrEP program in Morocco. These findings informed Morocco's current PrEP program and hold potential for the wider region with similar challenges.


Assuntos
Fármacos Anti-HIV , Infecções por HIV , Profilaxia Pré-Exposição , Profissionais do Sexo , Minorias Sexuais e de Gênero , Masculino , Humanos , Feminino , Homossexualidade Masculina , Infecções por HIV/tratamento farmacológico , Fármacos Anti-HIV/uso terapêutico , Marrocos , Profilaxia Pré-Exposição/métodos
19.
AIDS Care ; : 1-10, 2024 Jun 11.
Artigo em Inglês | MEDLINE | ID: mdl-38861653

RESUMO

We assessed the impact of community- versus clinic-based medication pick-up on rates of virologic suppression in an observational cohort of adults on ART enrolled in a decentralized antiretroviral therapy program (CCMDD) in South Africa. Participants either attended clinics where they were given the choice to pick up ART in community venues or traditional clinics, or clinics where this pathway was assigned. Among 1856 participants, 977 (53%) opted for community ART pick-up at enrollment, and 1201 (86%) were virologically suppressed at one year. Because of missing data on virologic suppression, primary results are based on a model incorporating multiple imputation. In addition to age and gender, distance from clinic and year of HIV diagnosis were included in the multivariable model. There was no difference in opting for clinic- vs. community-based pick-up with regard to achieving 12-month virologic suppression (aRR 1.02, 95% CI 0.98-1.05) in clinics offering choice. There was no impact of assigning all participants to an external pick-up point (aRR 1.00, 95% CI 0.95-1.06), but virologic suppression was reduced in the clinic that assigned participants to clinic pick-up (aRR 0.87, 95% CI 0.81-0.92). These results suggest that provision of community-based ART has not reduced continued virologic suppression in the population enrolled in the CCMDD program.

20.
Conserv Biol ; : e14249, 2024 Mar 15.
Artigo em Inglês | MEDLINE | ID: mdl-38488313

RESUMO

Conservationists increasingly position conservation that is mutually beneficial to people and biodiversity on the promise of empowerment of people through participatory discourse, metrics, processes, and outcomes. Empowerment represents multidimensional concepts and theories that permeate the interlinking levels of power, from the psychological to the political, and social scales in which conservation operates. The multifaceted nature of empowerment makes it challenging to understand, pursue, and evaluate as a central philosophical commitment and goal-oriented practice in conservation. Moreover, definitional and methodological uncertainty may disempower interested and affected groups because they can foster conceptual assumptions that reinforce institutionalized barriers to systemic changes. Despite these complexities, there are no targeted reviews of empowerment in conservation. We conducted a scoping review of the conservation literature to synthesize the meanings and uses of empowerment in the field. We reviewed 121 of the most cited conservation articles that invoked or assessed empowerment from 1992 to 2017 to document geographic, conceptual, and methodological trends in the scales and theories of empowerment deployed by conservationists. Research claiming or assessing empowerment through conservation often focused on communities in the Global South. Most studies relied on qualitative and mixed methods (78%) collected largely from male or non-Indigenous participants. Few studies (30%) defined the 20 types of empowerment they referenced. Fewer studies (3%) applied empowerment theories in their work. Our findings show that empowerment discourse of local and Indigenous communities permeates the discourse of people-centered conservation. Yet, overreliance on empowerment's rhetorical promise and minimal engagement with theory (e.g., postcolonial theory) risks disempowering people by obscuring empowerment's foundational value to conservation and communities and oversimplifying the complex realities of people-centered conservation. Lasting change could come from more meaningful engagement with empowerment, including coproducing definitions and measures with and for disempowered social groups to tackle widespread power disparities in conservation today.


El alcance del empoderamiento para la conservación y las comunidades Resumen Con frecuencia los conservacionistas posicionan a la conservación como benéfica para las personas y la biodiversidad mediante discursos, medidas, procesos y resultados participativos que prometen el empoderamiento de la gente. El empoderamiento representa conceptos y teorías multidimensionales que permean los niveles interconectados de poder, desde el psicológico al político, y las escalas sociales en las que opera la conservación. La naturaleza multifacética del empoderamiento complica que se entienda, se dé seguimiento y se evalúe como un compromiso filosófico central y una práctica orientada hacia las metas dentro de la conservación. Además, la incertidumbre metodológica y de definición pueden restar autoridad a los grupos interesados o afectados pues pueden promover suposiciones conceptuales que refuerzan las barreras institucionales de los cambios sistémicos. A pesar de estas complejidades, no existen revisiones focalizadas del empoderamiento en la conservación. Realizamos una revisión de alcance de la literatura de conservación para sintetizar los significados y usos de la palabra empoderamiento en este campo. Revisamos 121 de los artículos sobre conservación más citados que invocaron o evaluaron el empoderamiento entre 1992 y 2017 para documentar las tendencias geográficas, conceptuales y metodológicas en las escalas y teorías del empoderamiento usadas por los conservacionistas. La mayoría de los artículos que afirmaban o evaluaban el empoderamiento por medio de la conservación se enfocaron en comunidades del Sur Global. La mayoría de los estudios dependieron de métodos cualitativos y mixtos (78%) tomados principalmente de participantes masculinos o no indígenas. Pocos estudios (30%) definieron los 20 tipos de empoderamiento que referenciaron. Todavía menos estudios (3%) aplicaron las teorías de empoderamiento a su trabajo. Nuestros descubrimientos muestran que el discurso de empoderamiento de las comunidades locales e indígenas permea el discurso de la conservación centrada en la gente. Sin embargo, depender en exceso de la promesa retórica del empoderamiento e involucrarse en lo mínimo con la teoría (p. ej.: teoría postcolonial) arriesga que la gente se pierda autoridad al oscurecer el valor fundamental que tiene el empoderamiento para la conservación y las comunidades y simplificar sobremanera las realidades complejas de la conservación centrada en las personas. El cambio duradero podría venir de involucrarse de forma más significativa con el empoderamiento, lo que incluye la coproducción de definiciones y medidas con y para los grupos sociales no empoderados para resolver la disparidad de poder que existe hoy en día en la conservación.

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