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Examining inclusive research practices to engage communities: a qualitative inquiry

Chan, Sze Wan Celine; Diaz, Kimberly; Lin, Nelson; Chakraborty, Trisa; Ali, Shahmir H; Ðoàn, Lan N; Kwon, Simona C; Hade, Erinn M; Yi, Stella S
BACKGROUND:Efforts to improve representation of diverse communities in clinical research have progressed, yet suboptimal reach due to lack of language support, mistrust, and cultural misalignment, persist. While research often prioritizes generalizability or recruiting a specific community, a tailored approach is essential to recruit and retain diverse communities. This study aims to illustrate the depth and breadth of existing community-engaged research methods that have been used to increase recruitment and retention of diverse communities. METHODS:Semi-structured interviews were conducted to identify common themes and best practices of inclusive research with 48 principal investigators and their study staff who had successfully engaged with different diverse communities from research institutions in the United States. Data were analyzed using a rapid qualitative analysis approach and organized thematically. FINDINGS/RESULTS:Six key themes related to conducting community-engaged research emerged: research team as community health advocate, community-academic partnership characteristics, best practices for conducting research with diverse communities, incurred financial costs, sustainability of inclusive research efforts, and system-related challenges. Participants emphasized the role of research teams to uplift community voices, build authentic and collaborative partnerships, prioritize cultural practices of the community, and use data to inform policy. Best practices included providing incentives, offering bilingual materials and having bilingual staff, and using multi-pronged recruitment and retention strategies. Financial costs included both tangible costs such as transportation and honoraria, while intangible costs such as time and trust-building were also highlighted. Sustainability required early planning, capacity-building, and continuous fiscal support. Challenges included insufficient institutional support, burnout, and staff turnover, stressing the need for multi-level strategies and solutions integrated into the research environment to support inclusive research practices. CONCLUSIONS:A general research approach that tailors to specific communities' preferences and fosters collaborative partnerships will better enhance representation in research. However, the research environment requires attention to multi-level strategies to minimize challenges to conducting community-engaged research.
PMID: 42380985
ISSN: 1471-2458
CID: 6062772

"Don't be a hero, don't keep it a secret": understanding the lived experience of Chinese American patients with cancer through their expressive writing entries

Chebli, Perla; Kranick, Julie; Mazor, Melissa; Estrada, Weanne Myrrh; Mui, Angel; Foster, Victoria; Kwon, Simona C; Ngo, Victoria; Trinh-Shevrin, Chau; Tsai, William
PURPOSE/OBJECTIVE:Cancer is the leading cause of death for Chinese Americans, and research on optimal psychosocial interventions is scarce. Understanding the specific experiences of Chinese Americans with cancer is essential for developing supportive interventions. This study is a qualitative analysis of patient narratives collected from an Expressive Helping intervention, obtained from Chinese Americans with cancer to explore their experiences and meaning making of their cancer diagnosis and treatment journeys. METHODS:Thirty-one participants completed four 20-min writing sessions related to their cancer experiences. Informed by the Common-Sense Model of illness self-regulation, we used iterative, blended deductive-inductive coding and conducted a thematic analysis to explore meaning making, illness perception/narrative, and peer-helping recommendations. RESULTS:Significant themes were identified at the intrapersonal, interpersonal, and organizational/community levels. Participants felt initial disbelief and distress at the cancer diagnosis, which were attenuated through reframing of their experiences and finding support from various sources. Participants were also worried about burdening their families with their diagnosis but subsequently came to appreciate their support. They described challenges with navigating the healthcare system but appreciated having access to trusted providers and modern medicine. Patients also provided advice to support other patients on their cancer journey. CONCLUSION/CONCLUSIONS:Understanding the factors that influence the mental health of patients with cancer and survivors is key to informing responsive supportive strategies. Our analysis of expressive writing narratives by Chinese Americans with cancer illuminates their unique challenges and myriad ways they find resilience and acceptance.
PMCID:13263289
PMID: 42283914
ISSN: 1433-7339
CID: 6048912

Efficacy of a language-concordant community health worker intervention to improve community-to-clinic linkage for dementia care: results of the randomized trial PLAN

Han, Hae-Ra; Perrin, Nancy; Yun, Ji-Young; Min, Deborah; Kwon, Simona C; Joo, Jinhui; Cho, Ji-Young; Kim, Sara; Lee, Hochang Benjamin
BACKGROUND:Linkage to medical services enables timely diagnosis and treatment, yet racial/ethnic minority older adults with limited English proficiency (LEP) face substantial barriers. We tested Preparing Healthy Aging through Dementia Literacy Education and Navigation (PLAN), a language-concordant community health worker (CHW)-led intervention, to improve dementia linkage among Korean American (KA) older adults with undiagnosed probable dementia and to assess caregiver outcomes. METHODS:In a community-based randomized trial, 287 older adult-caregiver dyads were followed for 6 months. Trained Korean-speaking CHWs delivered a 1-h dementia literacy education session plus phone navigation. The primary outcome was linkage to medical services, verified through clinic documentation. Secondary outcomes included caregiver psychosocial measures. RESULTS:PLAN increased linkage to medical services versus control (16.7% vs 0%, chi-squared [df = 1] = 24.05, p < 0.001). Caregiver outcomes were largely unchanged, with self-efficacy favoring control. DISCUSSION/CONCLUSIONS:This language-concordant CHW model achieved verified community-to-clinic linkage at 6 months. Longer follow-up and testing across diverse LEP communities are needed to assess diagnosis, treatment initiation, and caregiver trajectories.
PMCID:13240054
PMID: 42233272
ISSN: 1552-5279
CID: 6044002

Evaluating a Community-partnered Approach to Address Locally Relevant Determinants of Cancer Screening in New York City

Chebli, Perla; Spurrell-Huss, Elizabeth; Foster, Victoria; Charles, Kimberly; Sifuentes, Sonia; Kranick, Julie; LeCroy, Madison N; Jones, Lauren K; Ravichandar, Rita; Diaby, Kadiatou; Rodriguez, Smeily; Gutnick, Damara; Kwon, Simona C; Gerkin, Kody; Grant, Camesha; Rapkin, Bruce D; ,; Trinh-Shevrin, Chau
BACKGROUND:New York City (NYC) Cancer Outreach Network in Neighborhoods for Equity and Community Translation (CONNECT) aims to address determinants of cancer screening and access disparities in low-income NYC neighborhoods with high cancer burden. OBJECTIVES/OBJECTIVE:NYC CONNECT community partners formed neighborhood action councils (NACs) and engaged in mixed-method formative research and an iterative consensus-building process to co-identify structural and social determinants of cancer screening. The NACs co-developed with health and academic partners community-level strategies to address structural determinants of health. The objective of this manuscript is to describe participatory processes to engage and support community partners in low-income and high poverty communities and the evaluation of their functioning within the context of a community-academic research partnership. METHODS:NYC CONNECT partnership development is informed by trauma-informed community building and community-based participatory research principles. Our mixed-methods partnership evaluation included surveys, qualitative interviews, and speaking time in meetings as a proxy for engagement. LESSONS LEARNED/CONCLUSIONS:Trauma-informed community building and community-based participatory research informed co-learning and consensus-building activities among the NACs. Identifying and prioritizing structural and social determinants of health strategies was a non-linear, iterative process that required multiple interactive activities (e.g., asset mapping, impact to effort matrix, and voting). CONCLUSION/CONCLUSIONS:Community engagement is a dynamic process that requires adapting to community partners' goals and sharing decision-making power.
PMCID:13112820
PMID: 41937649
ISSN: 1557-055x
CID: 6034532

Underrepresentation of Filipino, Laotian, Cambodian, and Indonesians Among US Allopathic Medical Students

Yang, David H; Zhang, Lindy; Li, B U K; Pang, Joyce; Hu, Jiun-Ruey; Hajduk, Alexandra M; Chaudhry, Sarwat I; Yi, Stella S; Đoàn, Lan N; Kwon, Simona C; Boatright, Dowin
BACKGROUND:With increasing efforts to cultivate and foster a diverse physician workforce to improve the delivery of culturally responsive care, the accurate representation of Asian medical students continues to be obscured by aggregation of over 40 ethnic groups that are categorized as Asian race. OBJECTIVE:To describe representation of Asian ethnic groups among applicants and matriculants to US allopathic medical schools. DESIGN AND PARTICIPANTS: Cross-sectional study of applicant and matriculant data from 2020 to 2023, provided by the Association of American Medical Colleges, on self-reported Asian ethnic group and sex of medical school applicants and matriculants, compared with the American Community Survey population estimates of the typical medical school-aged population. MAIN MEASURES/METHODS:For each academic year, Asian ethnic group, and sex, the representation quotient (RQ), defined as the proportion of an ethnic group in the total population of medical school applicants or matriculants relative to the corresponding estimated proportion of that ethnic group in the US population, was calculated. We compared differences in applicant and matriculant RQs using t-tests for those with an RQ less than one. KEY RESULTS/RESULTS:Cambodian, Filipino, Indonesian, and Laotian applicants and matriculants were underrepresented in medicine with an RQ less than one. The RQ of Filipino females was lower than Filipino males among applicants and matriculants (p = 0.04 and 0.04, respectively). The RQ of Laotian and Filipino matriculants were lower than their respective applicant representation (p = 0.01 and 0.02, respectively). CONCLUSIONS:With disaggregated race and ethnicity data, we found significant variation in representation of Asian ethnic groups among medical school applicants and matriculants relative to the US population. Aggregating Asians into a single racial group conceals a more nuanced picture of representation in medicine, hindering efforts for a diverse workforce and improved patient care.
PMCID:13032193
PMID: 41023302
ISSN: 1525-1497
CID: 6028732

COVID-19, Anti-Asian Discrimination and Stress: Impacts and Mental Health Needs by Age

Chan, Sze Wan Celine; Lam, Stanley Z; Đoàn, Lan N; LeCroy, Madison N; Saw, Anne; Kwon, Simona C; Yi, Stella S
PMID: 41945303
ISSN: 2196-8837
CID: 6025252

Disparities for Asian American Medical Students in Alpha Omega Alpha and Gold Humanism Honor Societies

Yang, David H; Nguyen, Mytien; Zhang, Lindy; Hu, Jiun-Ruey; Kwon, Simona C; Yi, Stella S; Ðoàn, Lan N; Henderson, David; Hajduk, Alexandra M; Chaudhry, Sarwat I; Li, B U K; Boatright, Dowin
IMPORTANCE/UNASSIGNED:Membership in both the Alpha Omega Alpha (AOA) and Gold Humanism Honor Society (GHHS) is positively associated with career advancement. Prior studies have shown that Asian American medical students are less likely to be selected for these societies, but it is unknown whether representation among specific Asian American subgroups differ. OBJECTIVE/UNASSIGNED:To examine the association between AOA and GHHS membership and self-reported ethnicity among Asian American students at US doctor of medicine (MD)-granting medical schools. DESIGN, SETTING, AND PARTICIPANTS/UNASSIGNED:This retrospective cross-sectional study analyzed deidentified data from the Association of American Medical Colleges, focusing on allopathic medical students graduating between 2018 and 2021. Data analysis was conducted from July 10, 2024, to January 26, 2026. EXPOSURE/UNASSIGNED:Self-reported race and Asian ethnicity. MAIN OUTCOMES AND MEASURES/UNASSIGNED:The primary outcome was AOA and GHHS membership at graduation. Multivariable logistic regression was performed, adjusting for Medical College Admission Test score, childhood income, sex, and sexual orientation, and clustered by medical school. RESULTS/UNASSIGNED:Among 55 632 graduating medical students, 28 127 (50.6%) self-identified as female and 10 867 (19.5%) as Asian American. AOA membership was reported by 10 126 students (18.2%), and GHHS membership was reported by 8623 students (15.5%). Bangladeshi (odds ratio [OR], 0.35; 95% CI, 0.20-0.61), Chinese (OR, 0.51; 95% CI, 0.44-0.58), Filipino (adjusted OR, 0.44; 95% CI, 0.29-0.65), Indian (OR, 0.56; 95% CI, 0.50-0.63), Japanese (OR, 0.48; 95% CI, 0.28-0.81), Korean (OR, 0.41; 95% CI, 0.33-0.51), Pakistani (OR, 0.46; 95% CI, 0.34-0.63), Taiwanese (OR, 0.38; 95% CI, 0.28-0.51), and Vietnamese (OR, 0.56; 95% CI, 0.45-0.71) students were less likely to be AOA members than White students. Chinese (OR, 0.67; 95% CI, 0.58-0.78), Korean (OR, 0.55; 95% CI, 0.43-0.69), and Taiwanese (OR, 0.67; 95% CI, 0.49-0.91) students were less likely to be GHHS members compared with White students. CONCLUSIONS AND RELEVANCE/UNASSIGNED:This cross-sectional study of graduating medical students found widespread underrepresentation of most Asian American subgroups in AOA membership and for Chinese, Korean, and Taiwanese medical students in GHHS membership. This underscores the importance of disaggregating Asian American individuals in medicine to unmask disparities and provide opportunities to promote greater inclusion in medicine.
PMID: 41941185
ISSN: 2574-3805
CID: 6025122

Guidance for Community Engagement With Underserved Populations in Cancer Care

Solfisburg, Quinn S; Vang, Suzanne; Foster, Victoria; Kwon, Simona C; Moy, Beverly; Ko, Naomi Y
PMID: 41604605
ISSN: 2688-1535
CID: 6003552

Leveraging videos and community health workers to address social determinants of health in immigrants (LINK-IT): Protocol for a randomized controlled trial

Hu, Lu; Liu, Jing; Yang, Ximin; Teng, Crystal; Li, Huilin; Zhao, Yanan; Levy, Natalie; Zhu, Kelly; Vang, Suzanne; Kwon, Simona C; Feldman, Naumi; Lau, Jennifer; Jiang, Yanping; Trinh-Shevrin, Chau; Islam, Nadia
BACKGROUND:Chinese immigrants face numerous social determinants of health (SDOH) challenges that limit access to evidence-based diabetes self-management education and support programs (DSMES). To address these challenges, our team developed the LINK-IT intervention. This manuscript presents the study protocol for the LINK-IT trial. METHODS:The LINK-IT trial is a 12-month, 3-arm randomized controlled trial aiming to enroll 405 Chinese immigrants with T2D (HbA1c≥7%) from multiple community and clinical settings in New York City. A total of 405 participants will be randomly allocated to one of three groups (n = 135 per group): (1) video-based DSMES plus community health worker (CHW) support (VIDEO+CHW), (2) video-based DSMES only (VIDEO), or (3) wait-list control (CONTROL). The VIDEO+CHW group will receive 24 culturally and linguistically tailored DSMES videos (one per week for 24 weeks) delivered via text message links, along with biweekly (every other week) phone calls from trained CHWs to review video content, support goal setting, and address SDOH barriers. The VIDEO group will receive the same video intervention without CHW support. The CONTROL group will receive usual care and will be offered access to the videos upon study completion. The primary outcome is the change in HbA1c at 6 months. Secondary outcomes include changes in HbA1c at 12 months, self-efficacy for diabetes, dietary intake, physical activity, medication adherence and emotional support at 6 and 12 months. Data will be analyzed using an intention-to-treat approach with linear mixed-effects models. ETHICS AND DISSEMINATION/BACKGROUND:This study protocol has been approved by the Institutional Review Board of the NYU Grossman School of Medicine (S23-01274). All study procedures will adhere to the ethical principles outlined in the Declaration of Helsinki. Written or verbal informed consent will be obtained from all participants. Study results will be disseminated through peer-reviewed publications, presentations at scientific conferences, and community events. TRIAL REGISTRATION/BACKGROUND:The LINK-IT trial was registered on March 20, 2024, on ClinicalTrials.gov under the identifier NCT06319716; https://clinicaltrials.gov/study/NCT06319716.
PMCID:12863526
PMID: 41628090
ISSN: 1932-6203
CID: 5993702

The association of medical mistrust, clinical trial knowledge, and perceived clinical trial risk with willingness to participate in health research among historically marginalized individuals living in New York City

Curro, Isabel Inez; Wyatt, Laura; Foster, Victoria; Yusuf, Yousra; Sifuentes, Sonia; Chebli, Perla; Kranick, Julie A; Kwon, Simona C; Trinh-Shevrin, Chau; LeCroy, Madison N
Medical mistrust, clinical trial knowledge, and clinical trial risk impact research participation, yet are rarely studied among racial and ethnic groups. Data were from a cross-sectional survey (n = 1,794). Multinomial logistic regression models examined associations of medical mistrust, clinical trial knowledge, and clinical trial risk with willingness to participate in health research (Yes, No, Unsure) among Chinese, Korean, South Asian, Haitian, North American Latiné, South American Latiné, and Southwest Asian and North African (SWANA) NYC residents with one model per group. Overall, 46.0% of participants reported willingness to participate, ranging from 35.8% (Chinese participants) to 58.7% (South Asian participants). Increased mistrust was associated with less willingness among Chinese (OR: 1.06, 95%CI: 1.00, 1.12) and South American Latiné (OR: 1.15, 95%CI: 1.02, 1.30) participants; more willingness among Haitian participants (OR: 0.87, 95%CI: 0.81, 0.94); more uncertainty among Korean (OR: 1.13, 95%CI: 1.05, 1.22), South Asian (OR: 1.06 95%CI: 1.01, 1.12), and North American Latiné (OR: 1.18, 95%CI: 1.10, 1.28) participants; and less uncertainty among Haitian (OR: 0.91, 95%CI: 0.84, 0.99) and SWANA (OR: 0.91, 95%CI:0.86, 0.97) participants. Knowledge was associated with more willingness for Haitian participants (OR: 2.77, 95%CI: 1.15, 6.65), less willingness for Chinese participants (OR: 0.55, 95%CI: 0.34, 0.88), and more uncertainty among South Asian (OR: 2.09, 95%CI: 1.07, 4.07) and SWANA (OR: 2.71, 95%CI: 1.21, 6.03) participants. Some risk and more willingness were linked for South American Latiné participants (OR: 0.13, 95%CI: 0.02, 0.82). Associations varied by group. Studying multiple racial and ethnic groups advances equitable research representation.
PMID: 41524078
ISSN: 2731-7501
CID: 5985952