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1.
J Gen Intern Med ; 36(9): 2547-2554, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-34128196

RESUMO

BACKGROUND: African Americans (AAs) and other racial/ethnic minority groups continue to be underrepresented in medical research and clinical trials. Failure to create more racially diverse research cohorts can exacerbate existing health disparities among these groups. OBJECTIVE: To investigate best practices and strategies for enhancing participation of AAs in medical research among attendees of a preconference Institute at a faith-based public health conference. DESIGN: Qualitative study using semi-structured interviews. PARTICIPANTS: A total of 21 out of 29 attendees (90% AA) of the Institute (72% response rate). APPROACH: A culturally tailored preconference Institute was held at the 2017 Healthy Churches 2020 National Conference. The Institute was led by AA researchers focused on underrepresentation of AAs in medical research. Semi-structured interviews were conducted 1-year post-Institute (n=21) and were audio-recorded, transcribed verbatim, and reviewed using thematic analysis. KEY RESULTS: The majority of attendees reported that they were more likely to participate in medical research after attending the Institute (75%). Salient learning points reported by attendees demonstrated attainment of the Institute objectives. Key themes emerged describing barriers preventing AAs from participating in medical research including fear/lack of trust, lack of information on research projects, and not being approached to participate. Key themes regarding facilitators for participation in medical research by AAs were clear communication of study objectives and research benefits along with trust in researchers. CONCLUSIONS: Attendees' perceptions of participation in medical research were largely positive following their attendance at a conference-based Institute aimed to address the underrepresentation of AAs in medical research. Our culturally tailored approach to disseminating knowledge of the research process could extend to other national conferences prioritizing AAs and other racial/ethnic minority populations to improve research participation.


Assuntos
Pesquisa Biomédica , Negro ou Afro-Americano , Etnicidade , Humanos , Grupos Minoritários , Percepção
2.
Int J Obes (Lond) ; 44(3): 579-589, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-31911666

RESUMO

BACKGROUND/OBJECTIVES: Because no validated tool exists to assess nutrition knowledge regarding weight management we developed and tested the Weight Management Nutrition Knowledge Questionnaire (WMNKQ). SUBJECTS/METHODS: The questionnaire assesses nutrition knowledge in these categories: energy density of food, portion size/serving size, alcohol and sugar sweetened beverages, how food variety affects food intake, and reliable nutrition information sources. In total 60 questions were reviewed by 6 experts for face validity and quantitative analysis was used to assess item difficulty, item discrimination, internal consistency, inter-item-correlation, test-retest reliability, construct validity, criterion validity, and convergent validity. RESULTS: The final WMNKQ contained 43 items. Experts removed 3 of the original 60 questions and modified 41. Eighteen items did not meet criteria for item difficulty, item discrimination, and/or inter-item correlation; 4 were retained. The WMNKQ met criteria for internal consistency (Cronbach's alpha = 0.88), reliability (test-retest correlation ρ = 0.90, P < 0.0001), construct validity (known groups comparison) - dietitians scored 16% better (p < 0.0001) than information technology workers, and criterion validity (pre- to post-intervention improvement in knowledge scores = 11.2% (95% CI 9.8-12.5, p < 0.0001)). Participants younger than age 55 scored significantly better than those over age 55 (convergent validity). CONCLUSIONS: The WMNKQ measures how well nutrition principles of weight management are understood.


Assuntos
Peso Corporal/fisiologia , Conhecimentos, Atitudes e Prática em Saúde , Inquéritos Nutricionais , Adulto , Idoso , Promoção da Saúde , Humanos , Pessoa de Meia-Idade , Inquéritos Nutricionais/métodos , Inquéritos Nutricionais/normas , Nutricionistas , Reprodutibilidade dos Testes , Redução de Peso/fisiologia
3.
J Relig Health ; 57(6): 2538-2551, 2018 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-29995232

RESUMO

Unhealthy eating habits and physical inactivity along with lack of access to quality healthcare contribute to the marked health disparities in chronic diseases among African-Americans. Faith-based public health conferences offer a potential opportunity to improve health literacy and change health behaviors through health promotion within this population, thereby reducing health disparities. This study examined the self-reported health behaviors and preventive healthcare utilization patterns of 77 participants at a predominantly African-American faith-based public health conference, Healthy Churches 2020. A self-administered questionnaire was distributed to a sample of attendees to assess their health behaviors (diet and physical activity), preventive healthcare utilization (annual healthcare provider visits), and health-promoting activities at their places of worship. The results indicate that attendees of a faith-based public health conference have adequate preventive healthcare utilization, but suboptimal healthy behaviors. Our findings support the need for ongoing health-promoting activities with an emphasis on diet and physical activity among this population.


Assuntos
Negro ou Afro-Americano , Comportamentos Relacionados com a Saúde/etnologia , Conhecimentos, Atitudes e Prática em Saúde/etnologia , Promoção da Saúde , Disparidades em Assistência à Saúde , Aceitação pelo Paciente de Cuidados de Saúde/etnologia , Serviços Preventivos de Saúde , Religião , Adulto , Idoso , Idoso de 80 Anos ou mais , Distribuição de Qui-Quadrado , Clero , Estudos Transversais , Dieta Saudável , Exercício Físico , Comportamento Alimentar , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Autorrelato , Adulto Jovem
4.
Ann Hematol ; 96(1): 51-55, 2017 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-27730341

RESUMO

The translocation t(14;18)(q32;q21) (BCL-2/J(H)) is present in over 80 % of all follicular lymphomas and is detectable in peripheral blood lymphocytes (PBL) of healthy individuals. The prevalence of this translocation has not been studied in African Americans (AAs). Given the higher incidence of follicular lymphomas in whites compared to AAs in the United States (USA), we hypothesized that the translocation prevalence in the blood of AAs would be lower. DNA was isolated from PBL from blood samples collected from participants from FL. Polymerase chain reaction was performed on the BCL-2/J(H) major (MBC) and minor breakpoint cluster (mBC) regions. Eight of the 77 (10.4 %) blood samples from AA participants were positive for MBC (95 % CI, 4.6-19.5 %), and three (3.9 %) were positive for mBC (95 % CI, 0.81-10.97 %) of BCL-2/J(H), with a total of 11 (14.3 %) participants with positive samples (95 % CI, 7.35-24.13 %). In 167 white patient samples, 22 (13.2 %; 95 % CI, 8.44-19.26 %) were positive for MBC, and five (3.0 %; 95 % CI, 0.98-6.85 %) were positive for mBC, with a total of 25 (15 %) participants with positive samples (CI, 9.93-21.30 %). The prevalence of t(14;18)(q32;q21) is not significantly different among AAs and whites from the USA. The lower prevalence of follicular lymphomas in AAs compared with whites is likely a result of differences in secondary molecular alterations involved in follicular lymphoma development. This study is the first report of prevalence of t(14;18) in an AA cohort.


Assuntos
Negro ou Afro-Americano/genética , Proteínas Proto-Oncogênicas c-bcl-2/genética , Translocação Genética/genética , População Branca/genética , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Prevalência , Adulto Jovem
6.
J Health Commun ; 21(5): 527-33, 2016 05.
Artigo em Inglês | MEDLINE | ID: mdl-27077665

RESUMO

This study examined the effect of message framing on African American women's intention to participate in health-related research and actual registration in ResearchMatch (RM), a disease-neutral, national volunteer research registry. A community-engaged approach was used involving collaboration between an academic medical center and a volunteer service organization formed by professional women of color. A self-administered survey that contained an embedded message framing manipulation was distributed to more than 2,000 African American women attending the 2012 national assembly of The Links, Incorporated. A total of 391 surveys were completed (381 after exclusion: 187 containing the gain-framed message and 194 containing the loss-framed message). The majority (57%) of women expressed favorable intentions to participate in health-related research, and 21% subsequently enrolled in RM. The effect of message framing on intention was moderated by self-efficacy. There was no effect of message framing on RM registration; however, those with high self-efficacy were more than 2 times as likely as those with low self-efficacy to register as a potential study volunteer in RM (odds ratio = 2.62, 95% confidence interval [1.29, 5.33]). This investigation makes theoretical and practical contributions to the field of health communication and informs future strategies to meaningfully and effectively include women and minorities in health-related research.


Assuntos
Pesquisa Biomédica , Negro ou Afro-Americano/psicologia , Comunicação em Saúde/métodos , Intenção , Sujeitos da Pesquisa/psicologia , Negro ou Afro-Americano/estatística & dados numéricos , Idoso , Estudos Transversais , Feminino , Humanos , Pessoa de Meia-Idade , Sujeitos da Pesquisa/estatística & dados numéricos , Autoeficácia , Inquéritos e Questionários
7.
Arch Public Health ; 82(1): 35, 2024 Mar 14.
Artigo em Inglês | MEDLINE | ID: mdl-38486330

RESUMO

BACKGROUND: The National Cancer Institute's (NCI) Cancer Center Support Grants (CCSGs) encourages Cancer Centers to address health disparities and reduce the cancer burden in their Catchment Area (CA) through an organized Community Outreach and Engagement (COE) structure. This paper shares the development of two guide models that fosters the operations of the Mayo Clinic Comprehensive Cancer Center (MCCCC) COE Office and programs, the MCCCC COE Impact Model and the MCCCC COE Logic Model. METHODS: Following a less than stellar CCSG rating for COE in 2018, the MCCCC developed a transition team to specifically address the critique and create a transformative plan for engaging communities to address cancer burden in the CA. A qualitative research approach was employed, focusing on organizing and displaying the relationship between MCCCC COE processes and outcomes through impact and logic models. An impact model was developed to illustrate the components of the CCSG and connect those components to short- and long-term COE outcomes. A logic model was developed to track and monitor activities for continuous process improvement for all COE activities. RESULTS: The impact and logic model serve as a roadmap to monitor progress towards short- and long-term COE goals of the MCCCC. The COE operational strategies draw upon bidirectional partnership, evidence-based practices, and research facilitation to respond to the CCSG critique. CONCLUSION: These strategies demonstrate successful practices in addressing cancer burden, promoting health equity and eliminating cancer disparities in the MCCCC CA.

8.
Wien Klin Wochenschr ; 135(9-10): 221-227, 2023 May.
Artigo em Inglês | MEDLINE | ID: mdl-36469122

RESUMO

BACKGROUND: The COVID-19 pandemic has exacerbated existing income inequality and health disparities in the United States (US). The objective of this study was to conduct timely, community-engaged research to understand the disproportionate impact of the COVID-19 pandemic on historically under-resourced communities with the goal of improving health equity. The initiative focused on priorities identified by Community Health Needs Assessments (CHNA) conducted every 3 years per Federal funding requirements. These were access to healthcare, maternal/child health, obesity/food insecurity/physical activity, and mental health/addiction. METHODS: In the first three quarters of 2021, we developed and employed mixed methods in three simultaneous phases of data collection. In phase 1, we used purposive sampling to identify key informants from multiple stakeholder groups and conducted semi-structured interviews. In phase 2, we held focus groups with community members from historically marginalized demographics. In phase 3, we developed a survey using validated scales and distributed it to diverse communities residing in the geographic areas of our healthcare system across four states. CONCLUSION: Healthcare systems may use the methodology outlined in this paper to conduct responsive community engagement during periods of instability and/or crisis and to address health equity issues. The results can inform sustainable approaches to collaborate with communities to build resilience and prepare for future crises.


Assuntos
Comportamento Aditivo , COVID-19 , Criança , Humanos , COVID-19/epidemiologia , Pandemias , Projetos de Pesquisa , Coleta de Dados
9.
J Appl Gerontol ; 42(2): 280-289, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36184924

RESUMO

A dementia friendly community allows people with dementia and their care partners to remain engaged in their community well into the disease. This study presents the results of primary research aimed at exploring perceptions regarding building a dementia friendly community in an African American neighborhood in northeast Florida. Twelve focus groups and five interviews were conducted with people living with dementia, informal and formal care partners, community stakeholders and neighborhood residents, and analyzed using a grounded theory approach. Three main themes emerged from the analyses, including (1) perceived needs, (2) facilitators and barriers to being dementia friendly, and (3) opportunities for the community to become more dementia friendly. Study findings highlight the unique needs of a single African American neighborhood and the importance of culturally tailoring the dementia friendly model to diverse communities.


Assuntos
Negro ou Afro-Americano , Demência , Humanos , Demência/terapia , Cuidadores , Grupos Focais , Características de Residência
10.
J Cardiopulm Rehabil Prev ; 43(1): 22-30, 2023 01 01.
Artigo em Inglês | MEDLINE | ID: mdl-35881503

RESUMO

PURPOSE: Innovative methods for delivering cardiac rehabilitation (CR) that provide strategies to circumvent the mounting barriers to traditional CR have the potential to widen access to a well-established secondary prevention strategy. Our study assesses the feasibility and acceptability of a novel virtual world-based CR (VWCR) program, Destination Rehab , as an extension of a conventional center-based CR program. METHODS: Adult cardiac patients hospitalized at Mayo Clinic hospitals with a diagnosis for CR and ≥1 modifiable, lifestyle risk factor target-sedentary lifestyle (<3 hr physical activity/wk), unhealthy diet (<5 servings fruits and vegetables/d), or current smoking (>1 yr)-were recruited. Patients participated in an 8-wk health education program using a virtual world (VW) platform from a prior proof-of-concept study and a post-intervention focus group. Primary outcome measures included feasibility and acceptability. Secondary outcome measures included changes from baseline to post-intervention in cardiovascular (CV) health behaviors and biometrics, CV health knowledge, and psychosocial factors. RESULTS: Of the 30 enrolled patients (age 59.1 ± 9.7 yr; 50% women), 93% attended ≥1 session and 71% attended ≥75% of sessions. The overall VWCR experience received an 8 rating (scale 0-10) and had high acceptability. Clinically relevant trends were noted in CV health behaviors and biometrics, although not statistically significant. CONCLUSIONS: The VWCR program is a feasible, highly acceptable, and innovative platform to potentially influence health behaviors and CV risk and may increase accessibility to disadvantaged populations with higher CV disease burdens.


Assuntos
Reabilitação Cardíaca , Adulto , Humanos , Feminino , Pessoa de Meia-Idade , Idoso , Masculino , Reabilitação Cardíaca/métodos , Projetos Piloto , Exercício Físico , Estilo de Vida , Fatores de Risco
11.
J Clin Transl Sci ; 7(1): e84, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37125059

RESUMO

Residents of rural areas are underrepresented in research. The aim of this narrative review was to explore studies describing the effectiveness of community engagement strategies with rural communities to promote participant recruitment and participation in clinical research. Following PRISMA guidelines, this narrative review was conducted in June 2020. Our search strategy was built around keywords that included community-engaged research, rural community, and recruitment strategies into clinical research. Content-related descriptive statistics were summarized. The selected articles were distributed into categories of levels of community engagement: inform, consult, involve, collaborate, or co-lead. The search resulted in 2,473 identified studies of which forty-eight met inclusion criteria. Of these, 47.1% were randomized controlled trials. The most common levels of engagement were consultation (n = 24 studies) and collaboration (n = 15), while very few focused on informing (n = 2) and co-leadership (n = 2). Strategies, limitations, and findings are discussed for each level of community engagement. This narrative addressed a gap in knowledge regarding participant recruitment in rural communities in relation to assistance from community members. Community engagement contributed to the success of the research, especially in recruitment, participation, and building trust and partnership.

12.
Glob Adv Integr Med Health ; 12: 27536130231215014, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38026440

RESUMO

Background: For individuals living with chronic conditions like diabetes mellitus and obesity, there is a need for sustainable behavioral strategies and physiologic tools. These tools support identifying and addressing barriers to healthy eating, reducing body mass index (BMI), and building increased physical resilience in real time. Objective: To evaluate whether a 12-week learning management system designed to combine nutritional intervention with education and coaching on improving emotional intelligence (EI) could alter cardiometabolic outcomes. Methods: This pre-post prospective study enrolled 37 adult volunteers with BMI greater than 25 to participate in a 12-week learning management system. Primary (BMI, systolic blood pressure, diastolic blood pressure, low-density lipoprotein [LDL], high-density lipoprotein, and fasting glucose levels) and secondary self-reported outcomes were assessed at baseline, 12 weeks, and 6 months after enrollment using Short Form-36, Emotional Quotient Inventory (EQi), and Whole Health Index (WHI). Linear mixed-effects regression models with random effect were used to estimate changes in primary and secondary outcomes. We adjusted for multiple testing using Holm step-down method. Results: BMI and LDL were the only primary endpoints lower at program completion and 6-month follow-up compared to baseline levels (-1.63 and -17.77 mg/dL, respectively; P < .001). Secondary outcomes showing statistically significant improvement from baseline to 6-month follow-up included energy/fatigue (Short Form-36), self-regard (EQi), decision-making (EQi), impulse control (EQi), stress management (EQi), Whole Brain - Form A (WHI), Whole Food - Form C (WHI), and Whole Body - Form D (WHI). Conclusion: This study provides preliminary evidence that lifestyle programs combining nutritional interventions and EI can have a significant impact on BMI and LDL. Our study highlights the potential importance of both nutrition and EI in programs targeting diet and lifestyle modification.

13.
J Cancer Educ ; 27(2): 294-8, 2012 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-22072126

RESUMO

African Americans are underrepresented in cancer research. We evaluate whether collaboration with African American churches can improve cancer awareness and increase participation in translational research protocols among African Americans. From February to April 2010, the Mayo Clinic partnered with African American Jacksonville churches to provide educational programs focused on cancer research and healthy behaviors. Education on multiple myeloma and on-site access to a translational cancer research pilot project evaluating the prevalence of monoclonal gammopathies and t(14,18) in African Americans was offered. Seventy-four percent, 236 out of 318 participants, returned the questionnaires. The majority of participants had never received information on multiple myeloma (67%), had never received clinical research study information (57%), and were enrolled in the translational research studies (55%). Partnerships with African American churches in community education projects that bring research to church venues are effective in improving cancer awareness and in increasing research participation among African Americans.


Assuntos
Negro ou Afro-Americano , Pesquisa Participativa Baseada na Comunidade , Educação em Saúde , Mieloma Múltiplo/diagnóstico , Educação de Pacientes como Assunto/organização & administração , Pesquisa Translacional Biomédica , Adulto , Idoso , Conscientização , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Programas de Rastreamento , Pessoa de Meia-Idade , Mieloma Múltiplo/etnologia , Mieloma Múltiplo/prevenção & controle , Projetos Piloto
14.
J Racial Ethn Health Disparities ; 9(6): 2283-2290, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-34647272

RESUMO

African Americans experience a significantly greater burden of Alzheimer's disease (AD) compared to non-Hispanic White Americans. Raising awareness and increasing knowledge of AD within African American communities is an important step towards addressing these disparities. The purpose of this study was to assess the effectiveness of two approaches to sharing AD knowledge with community residents. Using a quasi-experimental design, African American participants were recruited through community partners and local resources in two comparable neighborhoods in Duval County, Florida, which formed the intervention and the comparison groups for this study. The identical 40-min educational lecture was provided to both groups. In the intervention community, the lecture was followed by focus group sessions modeled after the Dementia Friendly America toolkit. In the comparison community, the lecture was followed by a social event where participants could interact informally with the speaker and dementia outreach staff. A brief quantitative survey assessing AD knowledge was administered to participants in both groups before the education session, immediately after the lecture, and 2 months later. Results indicate that both groups improved their knowledge scores at immediate post-test. Scores for both groups declined at 2-month follow-up, but the comparison group's scores declined more precipitously than the intervention group's scores (p = 0.0.21). These results suggest that conducting focus groups and interviews following a lecture on AD may help better retain AD knowledge over time.


Assuntos
Doença de Alzheimer , Negro ou Afro-Americano , Humanos , Florida , População Branca , Escolaridade
15.
J Prim Care Community Health ; 13: 21501319221133076, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36331120

RESUMO

INTRODUCTION: The COVID-19 pandemic has disproportionally affected historically marginalized populations and their access to resources and healthcare. In times of crisis, authentic community engagement is more important than ever. This study was Phase 1 of a larger 3-phase study to conduct timely community-engaged research with community members to understand the disproportionate impact of COVID-19 on historically underserved communities. The objective of this work was to conduct key informant (KI) interviews (1) to understand community organizations perspectives about the role that large academic health centers play as they interface with community organizations to support their work, (2) to leverage KI's expertise to identify needs and assets within the community, and (3) to inform both Phase 2 (focus group qualitative research) and Phase 3 (survey) of the broader study. METHODS: A total of 24 key informants were identified through purposeful sampling and one-on-one semi-structured interviews were conducted across 4 states using video conferencing. RESULTS: Barriers to access and lack of transparency were highlighted as major issues requiring reform-in particular, aggressive billing practices and insurance barriers exacerbated local distrust of medical institutions. KIs recognized the health institution's support for testing and vaccination during the COVID-19 pandemic, but noted other significant gaps in care, especially regarding mental health support. Although communication with the health institution was consistent for some KIs, others experienced unsustained communication efforts that hindered cooperation and relationship building. CONCLUSIONS: Leaders in the community as key stakeholders can provide unique insights into the challenges and potential solutions required to promote health equity, and foster understanding between local communities and healthcare institutions.


Assuntos
COVID-19 , Humanos , Promoção da Saúde , Pandemias , Atenção à Saúde , Pesquisa Qualitativa
16.
J Clin Transl Sci ; 6(1): e117, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36285026

RESUMO

COVID-19 has widened the existing digital divide, especially for people from socially and economically deprived communities. We describe a program evaluation using a community participatory approach to develop self-reported items of patient experience with technology inclusive of digital access and literacy. The feedback received from Community Advisory Boards and Community Engagement Studio members led to the evaluation and refinement of the individual items. The community-based participatory approach highlighted in our paper to develop these items could serve as a model for other screening tool development for enhancing equity and inclusiveness in clinical care and research.

17.
J Clin Transl Sci ; 5(1): e117, 2021 Mar 17.
Artigo em Inglês | MEDLINE | ID: mdl-34221459

RESUMO

INTRODUCTION: To assess researchers' experiences working with community advisory boards (CABs) and perceptions of how community member stakeholder feedback impacted the research. METHODS: Individual interviews were conducted with researchers (n= 34) who had presented their research to a Mayo Clinic CAB (at MN, AZ, or FL) from 2014 to 2017, with an average interview duration of 10-15 min. Researchers were asked "In what ways did the feedback you received from the CAB influence your research?" A validated, structured, 7-item interview was used to assess domains of the potential influence that CABs had on the research: (1) pre-research (e.g., generated ideas), (2) infrastructure (e.g., budget preparation), (3) research design, (4) implementation (e.g., research recruitment), (5) analysis, (6) dissemination, and (7) post-research. A total mean score was calculated with a possible range of 0-7. In addition, open-ended examples and feedback from researchers in response to each domain were summarized for themes using content analysis. RESULTS: Researchers reported that the CAB influenced research in the following domains: pre-research (24%), infrastructure (24%), study design (41%), implementation (41%), analysis (6%), dissemination (24%), and post-research activities (18%). The mean total score was = 1.8 (SD = 1.7, range: 0-6). Open-ended responses revealed major themes of CAB helpfulness in generating/refining ideas, identifying community partners, culturally tailored and targeted recruitment strategies, intervention design and delivery, and dissemination. CONCLUSION: Findings from this preliminary evaluation indicate that despite positive experiences noted in open-ended feedback, the perceived quantitative impact of CAB feedback on the research was moderate. Bidirectional communication between researchers and community member stakeholders has the potential to make clinical and translational research more relevant and appropriate.

18.
J Clin Transl Sci ; 5(1): e125, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34367670

RESUMO

Novel endometrial cancer (EC) early-detection approaches may reduce racial disparities in mortality. We conducted six community-based focus groups with White and Black women (N = 57 participants) in February-March 2020 to explore acceptability of a home-based tampon sampling approach for EC. Participants also completed a survey. Data were analyzed using qualitative content analysis. Awareness of EC and risk factors was low. Acceptability regarding home sampling was high, but participants expressed concerns about instruction complexity and potential risks. Black women reported lower comfort with tampons. Increasing EC awareness, self-efficacy, and familiarization with tampons would advance prospects for at-home sample collection for EC testing.

19.
J Community Genet ; 11(4): 433-443, 2020 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-32562160

RESUMO

The lack of data on perspectives of racial and ethnic minority populations regarding family disclosure of individual research results (IRR) hinders the development of return of IRR policies and practices that are meaningful and culturally appropriate in diverse populations. This research aims to uncover preferences regarding family disclosure of IRR and identify factors that may shape the preferences in three minority populations. Nine focus groups with 68 adult African American, Hispanic/Latinx, and American Indian/Alaska Native individuals were conducted. Data were analyzed using thematic analysis. Participants were willing to share IRR with relatives who elected to know and preferred a participant-driven (vs. researcher-driven) decision-making process. Privacy of personal information was deemed important, as were anticipated familial benefits from genetic information, except when improper use of the information was suspected. Factors influencing family disclosure decisions included the family's biological and emotional closeness, and participants' perceived mental preparedness of the relative. Family disclosure of IRR among racial and ethnic minority individuals is a complex decision-making process wherein issues of individual privacy are entangled with family dynamic and familial benefit considerations. These data suggest that policies surrounding family disclosure of IRR should carefully consider participant preferences and adopt a participant-driven approach.

20.
J Clin Transl Sci ; 3(2-3): 125-128, 2019 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-31660236

RESUMO

Over 80% of CTSA programs have a community advisory board (CAB). Little is known about how research discussed with CABs aligns with community priorities (bidirectionality). This program evaluation assessed researcher presentations from 2014 to 2018 to the CABs linked to our CTSA at all three sites (Minnesota, Arizona, and Florida) for relevance to local community needs identified in 2013 and/or 2016. From content analysis, of 65 presentations total, 41 (63%) addressed ≥1 local health needs (47% Minnesota, 60% Florida, and 80% Arizona). Cross-cutting topics were cancer/cancer prevention (physical activity/obesity/nutrition) and mental health. Results could help to prioritize health outcomes of community-engaged research efforts.

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