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1.
Dev Psychopathol ; 35(5): 2113-2131, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37665095

RESUMO

African American families navigate not only everyday stressors and adversities but also unique sociocultural stressors (e.g., "toxic upstream waters" like oppression). These adverse conditions are consequences of the historical vestiges of slavery and Jim Crow laws, often manifested as inequities in wealth, housing, wages, employment, access to healthcare, and quality education. Despite these challenges, African American families have developed resilience using strength-based adaptive coping strategies, to some extent, to filter these waters. To advance the field of resilience research, we focused on the following questions: (1) what constitutes positive responses to adversity?; (2) how is resilience defined conceptually and measured operationally?; (3) how has the field of resilience evolved?; (4) who defines what, when, and how responses are manifestations of resilience, instead of, for example, resistance? How can resistance, which at times leads to positive adaptations, be incorporated into the study of resilience?; and (5) are there case examples that demonstrate ways to address structural oppression and the pernicious effects of racism through system-level interventions, thereby changing environmental situations that sustain toxic waters requiring acts of resilience to survive and thrive? We end by exploring how a re-conceptualization of resilience requires a paradigm shift and new methodological approaches to understand ways in which preventive interventions move beyond focusing on families' capacity to navigate oppression and target systems and structures that maintain these toxic waters.


Assuntos
Negro ou Afro-Americano , Família , Racismo , Resiliência Psicológica , Humanos , Negro ou Afro-Americano/psicologia , Racismo/etnologia , Racismo/psicologia , Família/etnologia , Família/psicologia
2.
Front Psychol ; 14: 956804, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37655195

RESUMO

Studies exploring widening academic disparities have highlighted the role of racialized school settings, which have given way to incidents of discrimination and unfair treatment for students of color, disproportionately affecting African American youth. Research also shows that family-based preventive interventions may avert negative outcomes for this population through the promotion of protective socialization practices. Consequently, the current study tests the efficacy of a culturally tailored preventive family-based program to foster induced changes in academic promotive parenting practices that prepare youth to advance academically by navigating negative race-related experiences in school settings. Data collected over four time periods from the Strong African American Families (SAAF) efficacy trial (Murry and Brody, 2004) with 667 African American families in rural Georgia were used for this study. Structural equation modeling analyses demonstrated that the SAAF program was associated with positive intervention induced changes in parental academic race-related socialization, which in turn, was indirectly associated with reduced school compromising behaviors through the enhancement of racial pride. While discrimination compromised academic success, our findings highlight the protective nature of racial pride in dissuading academic failure and school dropout through the promotion of academic success. This study confirms that a family-based prevention program holds promise to address academic disparities through the enhancement of parenting and youth protective processes that buffer youth from succumbing to racialized social environments such as schools. Implications for research, educational policy, and preventive interventions are discussed.

3.
Obstet Gynecol ; 142(2): 339-349, 2023 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-37473410

RESUMO

OBJECTIVE: To examine whether access to treatment for women with opioid use disorder (OUD) varied by race and ethnicity, community characteristics, and pregnancy status. METHODS: We conducted a secondary data analysis of a simulated patient caller study of buprenorphine-waivered prescribers and opioid-treatment programs in 10 U.S. states. We conducted multivariable analyses, accounting for potential confounders, to evaluate factors associated with likelihood of successfully securing an appointment. Descriptive statistics and significance testing examined 1) caller characteristics and call outcome by assigned race and ethnicity and clinic type (combined, opioid-treatment programs, and buprenorphine-waivered prescribers) and 2) clinic and community characteristics and call outcome by community race and ethnicity distribution (majority White vs majority Black, Hispanic, Asian, American Indian, Alaska Native, Native Hawaiian, or Pacific Islander) and clinic type. A multiple logistic regression model was fitted to assess the likelihood of obtaining an appointment by callers' race and ethnicity and pregnancy status with the exposure of interest being majority Black, Hispanic, Asian, American Indian, Alaska Native, Native Hawaiian, or Pacific Islander community distribution. RESULTS: In total, 3,547 calls reached clinics to schedule appointments. Buprenorphine-waivered prescribers were more likely to be in communities that were more than 50% White (88.9% vs 77.3%, P<.001), and opioid-treatment programs were more likely to be in communities that were less than 50% White (11.1% vs 22.7%, P<.001). Callers were more likely to be granted appointments in majority Black, Hispanic, Asian, American Indian, Alaska Native, Native Hawaiian, or Pacific Islander communities (adjusted odds ratio [aOR] 1.06, 95% CI 1.02-1.10 per 10% Black, Hispanic, Asian, American Indian, Alaska Native, Native Hawaiian, or Pacific Islander community population) and at opioid-treatment programs (aOR 4.94, 95% CI 3.52-6.92) and if they were not pregnant (aOR 1.79, 95% CI 1.53-2.09). CONCLUSION: Clinic distribution and likelihood of acceptance for treatment varied by community race and ethnicity distribution. Access to treatment for OUD remains challenging for pregnant people and in many historically marginalized U.S. communities.


Assuntos
Buprenorfina , Transtornos Relacionados ao Uso de Opioides , Feminino , Humanos , Gravidez , Estados Unidos , Analgésicos Opioides/uso terapêutico , Etnicidade , Transtornos Relacionados ao Uso de Opioides/tratamento farmacológico , Buprenorfina/uso terapêutico , Brancos
4.
Prev Sci ; 24(7): 1261-1274, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37386352

RESUMO

Individuals who are Asian or Asian American, Black or African American, Native American or American Indian or Alaska Native, Native Hawaiian or Pacific Islander, and Hispanic or Latino (i.e., presently considered racial ethnic minoritized groups in the USA) lacked equal access to resources for mitigating risk during COVID-19, which highlighted public health disparities and exacerbated inequities rooted in structural racism that have contributed to many injustices, such as failing public school systems and unsafe neighborhoods. Minoritized groups are also vulnerable to climate change wherein the most severe harms disproportionately fall upon underserved communities. While systemic changes are needed to address these pervasive syndemic conditions, immediate efforts involve examining strategies to promote equitable health and well-being-which served as the impetus for this study. We conducted a descriptive analysis on the prevalence of culturally tailored interventions and reporting of sample characteristics among 885 programs with evaluations published from 2010 to 2021 and recorded in the Blueprints for Healthy Youth Development registry. Inferential analyses also examined (1) reporting time trends and (2) the relationship between study quality (i.e., strong methods, beneficial effects) and culturally tailored programs and racial ethnic enrollment. Two percent of programs were developed for Black or African American youth, and 4% targeted Hispanic or Latino populations. For the 77% of studies that reported race, most enrollees were White (35%) followed by Black or African American (28%), and 31% collapsed across race or categorized race with ethnicity. In the 64% of studies that reported ethnicity, 32% of enrollees were Hispanic or Latino. Reporting has not improved, and there was no relationship between high-quality studies and programs developed for racial ethnic youth, or samples with high proportions of racial ethnic enrollees. Research gaps on racial ethnic groups call for clear reporting and better representation to reduce disparities and improve the utility of interventions.

5.
J Telemed Telecare ; : 1357633X221139630, 2022 Dec 25.
Artigo em Inglês | MEDLINE | ID: mdl-36567435

RESUMO

INTRODUCTION: Rural communities often face chronic challenges of high rates of serious health conditions coupled with inadequate access to health care services-challenges exacerbated by the COVID-19 pandemic. One strategy with the potential to mitigate these problems is the increased use of telehealth technology. A feature of telehealth applications-collaboration between health care providers for consultation and other purposes-referred to herein as Rural Provider-to-Provider Telehealth (RPPT), introduces important expertise that may not exist locally in rural communities. Literature indicates that RPPT is operationalized through many methods with an array of purposes. While RPPT is a promising strategy that brings additional expertise to patient-centered rural care delivery, there is limited evidence addressing important considerations, including how patient access and outcomes, provider satisfaction and performance, and payment may be affected by its use. METHODS: Recognizing the significant potential of RPPT and the need for more information associated with its use, the National Institutes of Health convened a Pathways to Prevention (P2P) workshop to further understand RPPT's effectiveness and impact on improving health outcomes in rural settings. The P2P initiative, supported by several federal health agencies, engaged rural health stakeholders and experts to examine four key questions, identify related knowledge gaps, and provide recommendations to advance understanding of the use and impact of RPPT. RESULTS: Included in this report is a description of the process used to generate information about RPPT, the identification of key knowledge gaps, and specific recommendations to further build needed evidence. DISCUSSION: The emerging use of RPPT is an important tool for bridging gaps in access to care that impacts rural populations. However, to fully understand the value and effects of RPPT, new research is needed to fill the knowledge gaps identified in this report. Additionally, this report should help engage providers, payors, and policymakers interested in supporting evidence-informed RPPT practice, policy, and payment, with the ultimate aim of improving access to health care and health status of rural communities in the United States and worldwide.

6.
BMC Health Serv Res ; 22(1): 1491, 2022 Dec 07.
Artigo em Inglês | MEDLINE | ID: mdl-36476363

RESUMO

BACKGROUND: Promotion, uptake, and adherence of pre-exposure prophylaxis (PrEP) is paramount to ending the HIV epidemic among young Black men who have sex with men in the South. The purpose of this study was to explore strategies needed for and barriers to PrEP uptake needed to achieve HIV prevention goals identified in the U.S. Department of Health & Human Services initiative to reduce new HIV infections in the United States by 90 percent by 2030. METHOD: Young adults (n = 25) between the ages of 15-34 were recruited from community-based organizations in Memphis to participate in four focus group discussions. Discussion topics included motivations, barriers, and facilitators to PrEP use. Data were analyzed using thematic analysis. RESULTS: All (100%) of participants self-identified as HIV-negative, Black (96%), men who have sex with men (96%), and currently prescribed PrEP/Truvada (60%). Themes identified for increasing uptake included 1) trusted peers, 2) relatable healthcare provider (e.g., Historically Black College and University (HBCU) trained, LGBTQ), and 3) use of social media. Mislabeling of PrEP as promiscuity promoting and limitations with PrEP marketing (e.g., solely LGBTQ) were recognized as barriers that perpetuated stigma. CONCLUSION: Findings suggest the importance of increasing awareness among health professions students matriculating at HBCUs of their perceived role as relatable healthcare providers by Black MSM; working closely with couples; and crafting of PrEP messaging that is non-stigmatizing. Findings will inform public health interventions for young Black MSM and facilitate HIV prevention efforts with other groups disproportionally affected by HIV in the South.


Assuntos
Infecções por HIV , Minorias Sexuais e de Gênero , Estudantes de Ciências da Saúde , Adolescente , Adulto , Humanos , Masculino , Adulto Jovem , Infecções por HIV/prevenção & controle , Homossexualidade Masculina
7.
Prev Sci ; 2022 Oct 12.
Artigo em Inglês | MEDLINE | ID: mdl-36223046

RESUMO

The historic momentum from national conversations on the roots and current impacts of racism in the USA presents an incredible window of opportunity for prevention scientists to revisit how common theories, measurement tools, methodologies, and interventions can be radically re-envisioned, retooled, and rebuilt to dismantle racism and promote equitable health for minoritized communities. Recognizing this opportunity, the NIH-funded Prevention Science and Methodology Group (PSMG) launched a series of presentations focused on the role of Prevention Science to address racism and discrimination guided by a commitment to social justice and health equity. The current manuscript aims to advance the field of Prevention Science by summarizing key issues raised during the series' presentations and proposing concrete research priorities and steps that hold promise for promoting health equity by addressing systemic racism. Being anti-racist is an active practice for all of us, whether we identify as methodologists, interventionists, practitioners, funders, community members, or an intersection of these identities. We implore prevention scientists and methodologists to take on these conversations with us to promote science and practice that offers every life the right to live in a just and equitable world.

8.
Prev Sci ; 2022 Sep 15.
Artigo em Inglês | MEDLINE | ID: mdl-36107276

RESUMO

Racism continues to be a major source of stress for African Americans and can impair psychological functioning. Adolescents experiencing discrimination may engage in self-soothing, but risky behaviors, which leave them at risk for negative life trajectories. Black pride has been identified as a key factor in explaining the heterogeneity in responses to discrimination. Racial socialization, strategies parents use to promote Black pride and protect youth from discrimination, is an important focus of family-based prevention programs serving African American families. This study tests the efficacy of a culturally tailored preventive intervention for rural African American families to disrupt the negative consequences of discrimination on adolescent psychological functioning. Four waves of data from the Strong African American Families (SAAF) efficacy trial (Murry & Brody in Journal of Marital & Family Therapy 30(3):271-283, 2004) with 667 African American families in rural Georgia were used for this study. Structural equation modeling was used to test study hypotheses. Adolescent experiences with discrimination at age 15 predicted concurrent psychological functioning and multiple risk behaviors at age 16, including sexual risk behavior, substance use problems, academic failure, and juvenile justice involvement. Mediation analyses demonstrated that psychological functioning was a significant mediator of these relations. The SAAF program was associated with increases in racial socialization, which in turn fostered gains in adolescent Black pride. Black pride was indirectly associated with reduced risk behavior through adolescent psychological functioning, but Black pride did not moderate the effect of discrimination on psychological functioning. This study confirms that family-based prevention can support African American adolescent mental health in the context of discrimination. However, more emphasis on reducing exposure to discrimination is needed.

10.
Advers Resil Sci ; 3(3): 247-259, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35677462

RESUMO

African American and US Latinx families have faced over two centuries of systemic racism and discrimination, elevating risk for trauma, adversity, and disparities for their youth. These circumstances have compromised the health and well-being of many of these youth. However, many other African American and US Latinx youth are able to succeed despite these challenges. In recent years, scholars have begun to identify ways in which minoritized youth adapt and respond to adversity to become competent, well-functioning individuals. Drawing on two conceptual models of cultural resilience, one grounded in the study of African American youth and one grounded in the study of US Latinx youth, we summarize supportive research associated with each model. Using these conceptual models to guide our critical review of extant studies, we present an integrative review of work to guide the design of strength-based, cultural asset-centered research studies and preventive interventions targeting African American and US Latinx youth.

12.
J Res Adolesc ; 32(1): 290-294, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-35165975

RESUMO

This commentary reflects on research studies included in this special issue, Black Lives Matter! Systems of Oppression Affecting Black Youth. A key finding in these studies is significance of developmental and social behavioral sciences to center systemic racism and oppression in studies of Black youth to more fully understand and explain how contextual factors and processes impact their everyday life experiences. This collection of papers offers insights and recommendations of ways advance research studies by expanding research to include upstream policies and practices and explain their roles in perpetuating oppression and discrimination. Applying multi-socio-ecological theoretical frameworks may demonstrate effective pathways to reduce environmental toxins that hinder positive health and well-being for adolescents, their families, and communities.


Assuntos
Negro ou Afro-Americano , Racismo Sistêmico , Adolescente , População Negra , Humanos , Estados Unidos
13.
Attach Hum Dev ; 24(3): 322-338, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-34697999

RESUMO

Attachment theory posits that parenting plays akey role in children's attachment and subsequent development. Given the normativity of racial discrimination on everyday life experiences of African American families, there is a need to integrate historical and socio-environmental processes in studies to understand how minoritized parents raise secure and stable children. Results from the current study revealed direct associations between mothers' reports of discrimination and heightened depression and anxiety. Maternal discriminatory experiences were indirectly associated with more negative parenting and compromised parent-child relationship quality, through mothers' psychological functioning. Elevated emotional and behavioral management problems among youth were directly associated with exposure to racial discrimination. Exposure to discrimination during middle childhood facilitated adapted or learned strategies to manage similar situations as youth transitioned into adolescence, with reduced patterns of depressive symptomology. No significant gender effects emerged. Implications for theoretical advancement and future research are provided.


Assuntos
Poder Familiar , Racismo , Adolescente , Negro ou Afro-Americano/psicologia , Criança , Feminino , Humanos , Estudos Longitudinais , Mães/psicologia , Apego ao Objeto , Poder Familiar/psicologia , Racismo/psicologia
14.
JMIR Form Res ; 5(11): e28678, 2021 Nov 30.
Artigo em Inglês | MEDLINE | ID: mdl-34851295

RESUMO

BACKGROUND: Individuals with sickle cell disease (SCD) and their caregivers may benefit from technology-based resources to improve disease self-management. OBJECTIVE: This study explores the preferences regarding a mobile health (mHealth) app to facilitate self-management in adults with SCD and their caregivers living in urban and rural communities. METHODS: Five community listening sessions were conducted in 2 urban and rural communities among adults with SCD and their caregivers (N=43). Each session comprised 4 to 15 participants. Participants were asked questions on methods of finding information about SCD self-care, satisfaction with current methods for finding SCD management information, support for SCD management, important features for development of an mHealth app, and areas of benefit for using an mHealth app for SCD self-management. An inductive-deductive content analysis approach was implemented to identify the critical themes. RESULTS: Seven critical themes emerged, including the current methods for receiving self-management information, desired information, recommendations for communicating sickle cell self-management information, challenges of disease management, types of support received for disease management, barriers to and facilitators of using an mHealth app, and feature preferences for an mHealth app. In addition, we found that the participants were receptive to using mHealth apps in SCD self-management. CONCLUSIONS: This study expands our knowledge on the use of mHealth technology to reduce information access barriers pertaining to SCD. The findings can be used to develop a patient-centered, user-friendly mHealth app to facilitate disease self-management, thus increasing access to resources for families of patients with SCD residing in rural communities.

15.
J Res Adolesc ; 31(4): 1114-1134, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-34820946

RESUMO

We use Hamilton's (1999) tripartite conception of the positive youth development (PYD) literature - that is, PYD as a theoretical construct, PYD as a frame for program design, and PYD as an instance of specific youth development programs - as a framework for reviewing scholarship involved in the PYD field across the second decade of the 21st century. Advances were made in all three domains and, as well, new issues emerged; chief among them was a focus on the promotion of social justice. We discuss ways in which social justice issues are being addressed within each of these domains and we present a vision for enhancing the PYD-social justice relation in future scholarship involving theory, research, program design, and community-based PYD programs.


Assuntos
Comportamento do Adolescente , Justiça Social , Adolescente , Humanos
16.
J Health Care Poor Underserved ; 31(1): 353-369, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32037336

RESUMO

Developing innovative strategies to engage patients as research partners is a priority in efforts to reduce health disparities in underserved communities. We describe the development and implementation of a training model to prepare Community Health Ambassadors (CHAs) to serve as liaisons to engage individuals with sickle cell disease (SCD) in patient-centered outcomes research. We trained CHAs on research guidelines, human subjects' protection, and SCD self-management. Community Health Ambassadors then employed community-level strategies to engage individuals with SCD and their families (N=432) residing in rural and urban communities throughout Tennessee. By engaging the SCD community, CHAs identified areas of burden for self-management and patientpreferred strategies to engage members of underserved minority groups in research. This community-based training model, which places CHAs as liaisons between researchers and the community, holds promise for scaling-up for replication and implementation in studies seeking to engage underserved populations with a chronic disease in health research.


Assuntos
Anemia Falciforme , Agentes Comunitários de Saúde/educação , Avaliação de Resultados da Assistência ao Paciente , Adulto , Serviços de Saúde Comunitária , Pesquisa Participativa Baseada na Comunidade , Educação/organização & administração , Feminino , Humanos , Masculino , Área Carente de Assistência Médica , Pessoa de Meia-Idade , Tennessee , Adulto Jovem
18.
AJR Am J Roentgenol ; 213(5): 1029-1036, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-31268730

RESUMO

OBJECTIVE. We studied Hispanic/Latina women's satisfaction with care after receiving group or individual educational sessions (vs standard of care) with a promotora before screening mammography. A promotora is a culturally appropriate community health worker for the Hispanic/Latino community. Promotoras have been shown to increase screening mammography rates and follow-up of abnormal mammograms in this population. However, a promotora's impact on elements of patient care and patient satisfaction remains poorly described. MATERIALS AND METHODS. Hispanic/Latina women 40-64 years old were randomized to one of three groups: the control group (standard-of-care well woman screening), an individual educational session with a promotora followed by well woman screening with access to the promotora, or a group educational session followed by well woman screening with access to the promotora. Access to the promotora included the opportunity to ask questions during well woman screening and a follow-up telephone call to discuss results and follow-up if necessary. Participants completed a premammography survey that assessed demographics and health literacy and a postmammography survey that assessed satisfaction with care, interpersonal processes of care, and satisfaction with the promotora. We used multivariable linear regression models and two-sample t tests for continuous outcome measures and a multivariable logistic regression model for dichotomized outcomes. RESULTS. Of the 100 women enrolled in the study, 94 completed well woman screening and the postmammography survey. Hispanic/Latina women with access to the promotora providing educational sessions in either the group (mean satisfaction with care score, 78.1) or individual (mean satisfaction with care score, 78.8) setting reported higher satisfaction with care than those receiving the standard of care (mean satisfaction with care score, 74.9) (p < 0.05). The odds of highly compassionate care in women receiving educational sessions was increased and was particularly strong for those receiving individual educational sessions compared with standard of care (odds ratio, 4.78 [95% CI, 1.51-15.13]). We found that increased satisfaction with the promotora was significantly associated with increased satisfaction with care but that group versus individual educational sessions did not significantly impact satisfaction with the promotora. CONCLUSION. Our study findings have important implications as patient navigators and shared decision making become integral to cancer screening. Group educational sessions may offer a method to decrease the time and expense of providing educational services in the cancer screening setting. However, the overall more positive interpersonal experiences suggested in the individual setting suggest that a larger study is warranted to better understand differences between group and individual educational settings.


Assuntos
Neoplasias da Mama/diagnóstico por imagem , Agentes Comunitários de Saúde , Hispânico ou Latino/educação , Mamografia , Educação de Pacientes como Assunto , Satisfação do Paciente , Adulto , Características Culturais , Detecção Precoce de Câncer , Feminino , Processos Grupais , Humanos , Pessoa de Meia-Idade
19.
J Adolesc Health ; 65(2): 255-261, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-31043346

RESUMO

PURPOSE: Technology provides new possibilities for disseminating effective prevention programming to underserved families, such as those residing in rural communities. The present study is an evaluation of a technology-delivered HIV risk prevention program designed for rural African-American families, Pathways for African American Success (PAAS), to determine its promise for increasing access to evidence-based youth risk prevention programs among those in the greatest need. METHODS: Four hundred and twelve parent/youth dyads were randomly assigned to one of three conditions: (1) in-person facilitator-led PAAS small group, (2) self-directed PAAS technology, or (3) a literature control with home-mailed educational materials. RESULTS: Compared with families in the literature control condition, families assigned to the PAAS technology or small group conditions demonstrated significantly stronger intervention induced parent-child protective processes (e.g., enhanced discussion quality, clearly articulated norms, and parental expectations about risk engagement) and lower youth intentions to engage in risky behaviors 6 months postintervention. Although some important nuances were noted, this study suggests that the PAAS technology-delivered modality is just as efficacious as the in-person facilitator-led, small group modality in dissuading HIV-related risk behaviors among rural African-American youths. CONCLUSIONS: Implications for having a menu of service delivery models that address the diverse needs and contexts of families are discussed, including the promise of technology as an alternative modality for reaching populations often characterized as difficult to reach and to engage in family-based preventive interventions.


Assuntos
Negro ou Afro-Americano/estatística & dados numéricos , Infecções por HIV/prevenção & controle , Educação em Saúde , Relações Pais-Filho , Assunção de Riscos , Adolescente , Criança , Avaliação Educacional/estatística & dados numéricos , Tecnologia Educacional , Feminino , Humanos , Masculino , População Rural
20.
J Genet Couns ; 28(4): 812-821, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-30969464

RESUMO

Benefits of identifying sickle cell disease (SCD) carriers include detection of at-risk couples who may be informed on reproductive choices. Studies consistently report insufficient knowledge about the genetic inheritance pattern of SCD among people with sickle cell trait (SCT). This study explored perspectives of adults with SCT on the information needed to make an informed reproductive decision and the recommendations for communicating SCT information. Five focus groups (N = 25) were conducted with African Americans with SCT ages 18-65 years old. Participants were asked about their knowledge of SCT, methods for finding information on SCT, impact of SCT on daily living, and interactions with healthcare providers. An inductive-deductive qualitative analysis was used to analyze the data for emerging themes. Four themes emerged, highlighting the unmet information needs of African American sickle cell carriers: (a) SCT and SCD Education; (b) information sources; (c) improved communication about SCT and SCD; and (d) increased screening strategies. Future studies are needed to determine effective strategies for communicating SCT information and to identify opportunities for education within community and medical settings. Identifying strategies to facilitate access to SCT resources and education could serve as a model for meeting unmet information needs for carriers of other genetic conditions.


Assuntos
Anemia Falciforme/genética , Triagem de Portadores Genéticos , Conhecimentos, Atitudes e Prática em Saúde , Traço Falciforme/diagnóstico , Adolescente , Adulto , Negro ou Afro-Americano/genética , Idoso , Anemia Falciforme/diagnóstico , Tomada de Decisões , Feminino , Grupos Focais , Humanos , Masculino , Pessoa de Meia-Idade , Fenótipo , Adulto Jovem
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