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"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

Guiding Approaches to Studying Alzheimer's Disease: A Scoping Review of Community Engagement, Health Communication, and Implementation Science Research

Yelton, Brooks; Workman, Lauren; Schaurer, Lauren; Riccardi, Nicholas; McCollum, Quentin; Belza, Basia; Ory, Marcia G; Thorpe, Roland J; Wheeler, Stephanie B; Trinh-Shevrin, Chau; Kreps, Gary L; Langa, Kenneth M; Friedman, Daniela B
BACKGROUND AND OBJECTIVES/OBJECTIVE:Alzheimer's disease and related dementias (ADRD) are a leading cause of death, affecting up to 57 million globally. Up to 45% of dementia cases could be prevented or delayed by addressing non-medical drivers of health (NMDoH). Community engagement, health communication, and implementation science are core areas of public health and important to consider when researching ADRD. However, these fields are often siloed, limiting efficacy of ADRD prevention and intervention. This scoping review maps how researchers have incorporated models and theoretical frameworks from these fields specific to ADRD outcomes and with attention to NMDoH. RESEARCH DESIGN AND METHODS/METHODS:We searched five social science databases, and articles were included if they were empirical, written in English language, published 2010 forward, focused on ADRD or cognitive health, guided by or developed a framework, theory, or model, and addressed community engagement, health communication, or implementation science. RESULTS:We retrieved 2,428 articles which were reviewed in multiple stages by five co-authors, resulting in a final sample of 32 articles. Most articles utilized published frameworks, models, or theories, while five were guided by author-developed approaches. Nine articles integrated two core areas, and only one article integrated all three. DISCUSSION AND IMPLICATIONS/CONCLUSIONS:Increased integration of core areas and systematic application of theoretical frameworks are necessary to improve ADRD research with attention to NMDoH. Findings have the potential to inform training and mentorship opportunities for early-career researchers on best practices in interdisciplinary ADRD research, thereby improving community and population health outcomes.
PMID: 42036812
ISSN: 1758-5341
CID: 6028942

Health equity and medical mistrust: a mixed-methods analysis of medical and social determinants among transgender women of colour in the TURNNT cohort study

Furuya, Alexander; Merriman, Jenesis; Houghton, Lauren; Benoit, Ellen; Whalen, Adam; Radix, Asa; Contreras, Jessica; Herrera, Cristina; Lim, Sahnah; Trinh-Shevrin, Chau; Duncan, Dustin T
Medical mistrust as a construct often places the onus of blame for adverse health outcomes on individuals rather than on social structures. In this study, we aimed to determine if medical mistreatment and access to transgender care were potential determinants of medical mistrust. We used longitudinal survey data from 193 transgender women of colour living in New York City. We measured medical mistrust using the Group-Based Medical Mistrust (GBMM) scale. Additionally, we analysed and coded open-ended survey data from participants regarding their trust towards medical institutions to identify potential determinants of medical mistrust. From the quantitative analysis, we found that individuals who experienced mistreatment in healthcare and those who reported poor access to transgender care had higher GBMM scores. Qualitative findings suggested that negative experiences within the healthcare system and historical trauma were key factors contributing to mistrust in medical institutions. Addressing medical mistrust should not occur at the individual level, but rather at the structural level. Potential interventions include improving access to gender affirming care and training health professionals.
PMID: 41489402
ISSN: 1464-5351
CID: 5985672

Association Between Criminal Legal System Involvement and HIV Prevention and Care Among Transgender Women of Color: The TURNNT Cohort Study

Furuya, Alexander; Whalen, Adam; Radix, Asa; Park, Su Hyun; Contreras, Jessica; Scheinmann, Roberta; Herrera, Cristina; Watson, Kim; Callander, Denton; Brown, Kamiah A; Schneider, John A; Lim, Sahnah; Trinh-Shevrin, Chau; Duncan, Dustin T
PMID: 41069121
ISSN: 2325-8306
CID: 5952312

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

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

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

Perceived access to gender-affirming care, completion of gender-affirming medical interventions, and psychological distress among transgender women of color: the TURNNT cohort study

Merriman, Jenesis; Dharma, Christoffer; Park, Su Hyun; Joiner, Andrea; Scheinmann, Roberta; Watson, Kim; Herrera, Cristina; Schneider, John A; Lim, Sahnah; Trinh-Shevrin, Chau; Radix, Asa; Duncan, Dustin T
Transgender women of color (TWOC) are disproportionately impacted by psychological distress. Though gender-affirming care (GAC) has been recommended to alleviate this distress, research examining associations between perceived access to GAC, specific gender-affirming medical interventions (GAMIs), and mental health among TWOC in the United States remains limited. In this study, we examine cross-sectional and longitudinal associations between perceived access to GAC, completion of specific GAMIs, and psychological distress among TWOC, using modified Poisson regression and multilevel linear modeling. Data came from the Trying to Understand Relationships, Networks and Neighborhoods Among Transgender Women of Color (TURNNT) Cohort Study. In multivariable analyses, increased access to GAC was associated with reduced psychological distress risk. All assessed GAMIs suggested protective effects against psychological distress (aRR < 1), with statistical significance found for breast augmentation and facial feminization surgery. On average, those with unmet GAMI needs experienced higher distress risk than those without. Longitudinally, those experiencing reduced access to GAC over 6 months faced the highest distress risk among all trajectory groups (aRR: 1.40, 95% CI, 1.08-1.82). Our findings support the need for further inquiry in this area and suggest that policies protecting and increasing access to GAC may improve mental health among TWOC. This article is part of a Special Collection on Methods in Social Epidemiology.
PMCID:12634113
PMID: 40579362
ISSN: 1476-6256
CID: 5969062

Community Connectedness as a Source of Adherence to HIV Prevention Behaviors and Resilience Among Transgender Women of Color in New York City, 2020-2022

Furuya, Alexander; Ransome, Yusuf; Kawachi, Ichiro; Callander, Denton; Radix, Asa; Whalen, Adam; Herrera, Cristina; Watson, Kim; Contreras, Jessica; Merriman, Jenesis; Bhatt, Krish J; Scheinmann, Roberta; Lim, Sahnah; Trinh-Shevrin, Chau; Schneider, John A; Park, Su Hyun; Duncan, Dustin T
PMCID:12424489
PMID: 40929666
ISSN: 1541-0048
CID: 5985652

Prevalence of breast, cervical, and colorectal cancer screenings among select New York City populations

Wyatt, Laura C; Nguyễn, Charlie H; LeCroy, Madison N; Foster, Victoria; Kranick, Julie; Yusuf, Yousra; Sifuentes, Sonia; Trinh-Shevrin, Chau; Kwon, Simona C
BACKGROUND:Prior studies have found racial and ethnic disparities in cancer screenings, yet smaller minority ethnic groups are often aggregated. METHODS:Data from the 2021-2022 Community Health Resources and Needs Assessment (Cancer CHRNA) and the 2017-2020 NYC Community Health Survey (CHS) examined the prevalence of breast, cervical, and colorectal cancer screenings among Eastern European, Afro-Caribbean, Latine, Chinese, Korean, South Asian, and Southwest Asian and North African (SWANA) groups in New York City. Multivariable logistic regression models estimated adjusted relative risks of cancer screening outcomes by group. RESULTS:Up-to-date mammogram screening was low (< 70%) among all groups except Afro-Caribbean in the Cancer CHRNA; and among South Asian, Chinese, and Eastern European groups in the CHS. In logistic regression, South Asian and SWANA groups were less likely to have received an up-to-date mammogram compared to the Afro-Caribbean group in the Cancer CHRNA; no group differences were found in the CHS. Up-to-date Pap screening was low (< 70%) among all groups except Latina in the Cancer CHRNA; and among South Asian and Chinese groups in the CHS. In logistic regression, all other groups were less likely to have received an up-to-date Pap test compared to the Latina group in the Cancer CHRNA; and Chinese and South Asian groups were less likely to have received an up-to-date Pap test compared to the Latina group in the CHS. Up-to-date colonoscopy screening was low (< 70%) among all groups in the Cancer CHRNA; and among SWANA, South Asian, Chinese, and Eastern European groups in the CHS. In logistic regression, all groups except Chinese were less likely to have received an up-to-date colonoscopy compared to the Eastern European group in the Cancer CHRNA; and the Chinese and SWANA groups were less likely to have received an up-to-date colonoscopy compared to the Afro-Caribbean group in the CHS. CONCLUSIONS:Disparities in cancer screenings differed by screening type and survey, with larger disparities found among groups in the Cancer CHRNA. System level efforts are needed to monitor cancer screening disparities by disaggregating diverse groups; culturally tailored strategies should be used to raise awareness to increase screening. CLINICAL TRIAL INFORMATION/BACKGROUND:Not applicable.
PMCID:12482105
PMID: 41029538
ISSN: 1471-2407
CID: 5965542