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Challenges and recommendations to improve institutional review boards' review of community-engaged research proposals: A scoping review

Onakomaiya, Deborah; Pan, Janet; Roberts, Timothy; Tan, Holly; Nadkarni, Smiti; Godina, Marina; Park, Jo; Fraser, Marilyn; Kwon, Simona C; Schoenthaler, Antoinette; Islam, Nadia
Academic and community investigators conducting community-engaged research (CEnR) are often met with challenges when seeking Institutional Review Board (IRB) approval. This scoping review aims to identify challenges and recommendations for CEnR investigators and community partners working with IRBs. Peer-reviewed articles that reported on CEnR, specified study-related challenges, and lessons learned for working with IRBs and conducted in the United States were included for review. Fifteen studies met the criteria and were extracted for this review. Four challenges identified (1) Community partners not being recognized as research partners (2) Cultural competence, language of consent forms, and literacy level of partners; (3) IRBs apply formulaic approaches to CEnR; & (4) Extensive delays in IRB preparation and approval potentially stifle the relationships with community partners. Recommendations included (1) Training IRBs to understand CEnR principles to streamline and increase the flexibility of the IRB review process; (2) Identifying influential community stakeholders who can provide support for the study; and (3) Disseminating human subjects research training that is accessible to all community investigator to satisfy IRB concerns. Findings from our study suggest that IRBs can benefit from more training in CEnR requirements and methodologies.
PMCID:10130837
PMID: 37125052
ISSN: 2059-8661
CID: 5544772

The development of a clinical research educational training for community health workers using the joint task force for clinical trial competency framework

Yakubov, Amin; Pimenova, Dina; Ahmed, Alzahraa; Corvacho, Romelia; Madigan, Joanna; Naik, Jay; Lyu, Chen; McFarlane, Anita; Foster, Victoria; Haseltine, Megan; Trifonov, Alexandr; Cabrera, Ivette; Rios, Clarissa; Gross, Rachel; Jay, Melanie; Lord, Aaron; Gold-von Simson, Gabrielle; Roy, Brita; Freeman, Amy; Islam, Nadia; Holahan, James
PMCID:10733486
PMID: 38130403
ISSN: 1663-9812
CID: 5612162

Family Involvement in Asian American Health Interventions: A Scoping Review and Conceptual Model

Ali, Shahmir H; Mohsin, Farhan M; Rouf, Rejowana; Parekh, Ravi; Dhar, Biswadeep; Kaur, Gurket; Parekh, Niyati; Islam, Nadia S; DiClemente, Ralph J
Family members play a crucial role in the health of Asian American communities, and their involvement in health interventions can be pivotal in optimizing impact and implementation. To explore how family members can be effectively involved in Asian American health interventions and develop a conceptual framework of methods of involvement at the stages of intervention development, process, and evaluation, this scoping review documented the role of Asian American family members in interventions (across any health objective). Of the 7175 studies identified through database and manual searches, we included 48 studies in the final analysis. Many studies focused on Chinese (54%) or Vietnamese (21%) populations, were conducted in California (44%), and involved spouses (35%) or parents/children (39%). We observed involvement across 3 stages: (1) intervention development (formative research, review process, material development), (2) intervention process (recruitment, receiving the intervention together, receiving a parallel intervention, enlisting support to achieve goals, voluntary intervention support, agent of family-wide change, and participation gatekeepers), and (3) intervention evaluation (received evaluation together, indirect impact evaluation, and feedback during intervention). Impact of family member involvement was both positive (as sources of encouragement, insight, accountability, comfort, and passion) and negative (sources of hindrance, backlash, stigma, obligation, and negative influence). Suggestions for future research interventions include (1) exploring family involvement in South Asian or young adult interventions, (2) diversifying types of family members involved (eg, extended family), and (3) diversifying methods of involvement (eg, family members as implementation agents).
PMID: 36560878
ISSN: 1468-2877
CID: 5409332

Strategies to Improve Medication Adherence and Blood Pressure Among Racial/Ethnic Minority Populations: A Scoping Review of the Literature from 2017 to 2021

Onakomaiya, Deborah; Cooper, Claire; Barber, Aigna; Roberts, Timothy; Gyamfi, Joyce; Zanowiak, Jennifer; Islam, Nadia; Ogedegbe, Gbenga; Schoenthaler, Antoinette
PURPOSE OF REVIEW/OBJECTIVE:To identify intervention strategies that were effective in promoting medication adherence and HTN control among racial/ethnic minority groups in the US. RECENT FINDINGS/RESULTS:Twelve articles were included in this review and 4 categories of intervention strategies were identified as counseling by trained personnel, mHealth tools, mHealth tools in combination with counseling by trained personnel, and quality improvement. The findings show that interventions delivered by trained personnel are effective in lowering BP and improving medication adherence, particularly for those delivered by health educators, CHWs, medical assistants, and pharmacists. Additionally, the combination of mHealth tools with counseling by trained personnel has the potential to be more effective than either mHealth or counseling alone and report beneficial effects on medication adherence and BP control. This review provides potential next steps for future research to examine the effectiveness of mHealth interventions in combination with support from trained health personnel and its effects on racial disparities in HTN outcomes.
PMID: 36136215
ISSN: 1534-3111
CID: 5335562

Leveraging Social Media to Increase Access to an Evidence-Based Diabetes Intervention Among Low-Income Chinese Immigrants: Protocol for a Pilot Randomized Controlled Trial

Hu, Lu; Islam, Nadia; Zhang, Yiyang; Shi, Yun; Li, Huilin; Wang, Chan; Sevick, Mary Ann
BACKGROUND:Type 2 diabetes (T2D) in Chinese Americans is a rising public health concern for the US health care system. The majority of Chinese Americans with T2D are foreign-born older immigrants and report limited English proficiency and health literacy. Multiple social determinants of health limit access to evidence-based diabetes interventions for underserved Chinese immigrants. A social media-based diabetes intervention may be feasible to reach this community. OBJECTIVE:The purpose of the Chinese American Research and Education (CARE) study was to examine the potential efficacy of a social media-based intervention on glycemic control in Chinese Americans with T2D. Additionally, the study aimed to explore the potential effects of the intervention on psychosocial and behavioral factors involved in successful T2D management. In this report, we describe the design and protocol of the CARE trial. METHODS:and psychosocial and behavioral outcomes. RESULTS:This pilot RCT study was approved by the Institutional Review Board at NYU Grossman School of Medicine in March 2021. The first participant was enrolled in March 2021, and the recruitment goal (n=60) was met in March 2022. All data collection is expected to conclude by November 2022, with data analysis and study results ready for reporting by December 2023. Findings from this pilot RCT will further guide the team in planning a future large-scale study. CONCLUSIONS:This study will serve as an important first step in exploring scalable interventions to increase access to evidence-based diabetes interventions among underserved, low-income, immigrant populations. This has significant implications for chronic care in other high-risk immigrant groups, such as low-income Hispanic immigrants, who also bear a high T2D burden, face similar barriers to accessing diabetes programs, and report frequent social media use (eg, WhatsApp). TRIAL REGISTRATION/BACKGROUND:ClinicalTrials.gov NCT03557697; https://clinicaltrials.gov/ct2/show/NCT03557697. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID)/UNASSIGNED:DERR1-10.2196/42554.
PMID: 36306161
ISSN: 1929-0748
CID: 5359682

Disparities in colorectal cancer screening among South Asians in New York City: a cross-sectional study

Wyatt, Laura C; Patel, Shilpa; Kranick, Julie A; Raveis, Victoria H; Ravenell, Joseph E; Yi, Stella S; Kwon, Simona C; Islam, Nadia S
Despite improvements in colorectal cancer (CRC) screening in New York City (NYC) since the early 2000s, the degree to which disparities persist for specific Asian American subgroups has yet to be fully elucidated. The purpose of this study is to examine disparities in rates of timely colonoscopy screening among five racial/ethnic groups in NYC. We performed a retrospective cross-sectional analysis of combined 2014-2018 NYC Community Health Survey data. Prevalence estimates of timely colonoscopy screening (within the past 10 years) among individuals ≥ 50 years of age were calculated and presented overall (n = 24,288) and by socio-demographic variables. Racial/ethnic categories included White, Black, Hispanic, East Asian, and South Asian. Multivariable models examined socio-demographic and racial/ethnic predictors of timely colonoscopy screening. A trend analysis examined colonoscopy screening by race/ethnicity and year from 2012 to 2018 (n = 33,130). Age-adjusted prevalence of timely colonoscopy screening was lowest among Asian Americans (South Asian 61.1% and East Asian 65.9%) compared to Hispanics (71.3%), Blacks (70.2%), and Whites (68.6%). Adjustment by socio-demographics, including insurance status, further explained disparities for South Asians (adjusted risk ratio [RR] = 0.84, 95% CI = 0.73-0.97) compared to Hispanics; additionally, Whites (adjusted RR=0.88, 95% CI = 0.84-0.92) were less likely to have received a timely colonoscopy compared to Hispanics. Age, health insurance, poverty group, and education were significant predictors in adjusted regression. Results indicate that South Asians have not equally benefited from campaigns to increase colonoscopy screening in NYC. Our findings support the development of targeted, and linguistically and culturally adapted campaigns that facilitate access to health systems and leverage existing community assets and social support systems among South Asian populations.
PMID: 33723796
ISSN: 1543-0154
CID: 4817592

Needs assessment and planning for a clinic-community-based implementation program for hypertension control among blacks in New York City: a protocol paper

Gyamfi, Joyce; Cooper, Claire; Barber, Aigna; Onakomaiya, Deborah; Lee, Wen-Yu; Zanowiak, Jennifer; Mansu, Moses; Diaz, Laura; Thompson, Linda; Abrams, Roger; Schoenthaler, Antoinette; Islam, Nadia; Ogedegbe, Gbenga
BACKGROUND:Hypertension (HTN) control among Blacks in the USA has become a major public health challenge. Barriers to HTN control exist at multiple levels including patient, physician, and the health system. Patients also encounter significant community-level barriers, such as poor linkage to social services that impact health (unstable housing, food access, transportation). We describe a multi-component needs assessment to inform the development, implementation, and evaluation of a program to improve HTN management within a large healthcare system in New York City (NYC). METHODS:Guided by the Community-Based Participatory Research (CBPR) and Consolidated Framework for Implementation Research (CFIR) frameworks, data will be collected from four main sources: (1) quantitative surveys with health systems leadership, providers, and staff and with community-based organizations (CBOs) and faith-based organizations (FBOs); (2) qualitative interviews and focus groups with health systems leadership, providers, and staff and with CBOs and FBOs; (3) NYC Community Health Survey (CHS); and (4) New York University (NYU) Health system Epic Electronic Health Record (EHR) system. The data sources will allow for triangulation and synthesis of findings. DISCUSSION/CONCLUSIONS:Findings from this comprehensive needs assessment will inform the development of a clinic-community-based practice facilitation program utilizing three multi-level evidence-based interventions (nurse case management, remote blood pressure (BP) monitoring, and social determinants of health (SDoH) support) integrated as a community-clinic linkage model for improved HTN control in Black patients. Integration of stakeholders' priorities, perspectives, and practices into the development of the program will improve adoption, sustainability, and the potential for scale-up. TRIAL REGISTRATION/BACKGROUND:NCT05208450; registered on January 26, 2022.
PMCID:9450294
PMID: 36068611
ISSN: 2662-2211
CID: 5336992

Protocol and baseline characteristics for a community health worker-led hypertension and diabetes management program for South Asians in Atlanta: The DREAM Atlanta study

Shah, Megha K; Wyatt, Laura C; Gibbs-Tewary, Christina; Zanowiak, Jennifer; Mammen, Shinu; Mohsin, Farhan M; Islam, Nadia
BACKGROUND:South Asians are disproportionately affected by type 2 diabetes (DMII) and comorbid hypertension (HTN). Community health worker (CHW) interventions have been shown to improve chronic disease outcomes, yet few have been tailored for South Asians. This paper describes the study protocol and baseline characteristics of an evidence-based CHW intervention to improve blood pressure (BP) control among South Asian adults with diabetes and comorbid HTN in Atlanta, GA. METHODS:A total of 195 South Asian adults were randomized to treatment and control groups, and of these 190 completed baseline surveys (97 treatment group and 93 control group). The treatment group receives five group education sessions on DMII and HTN management and two one-on-one goal setting sessions. MEASURES/METHODS:Primary outcomes include feasibility, acceptability, and BP control (systolic blood pressure [SBP] <130 and diastolic blood pressure [DBP] <80). Secondary outcomes included changes in glycated hemoglobin (HbA1c), weight, diabetes self-efficacy, diet, and physical activity. BASELINE RESULTS/RESULTS:Of the enrolled sample, 56% are female and mean age is 56.0 (±11.7). All participants are foreign-born. Mean SBP was 139.2 and mean DBP was 84.7. Intervention outcomes are measured at baseline and 6-month endpoint for both study groups. CONCLUSIONS:To our knowledge, this study is the first to document the efficacy of a HTN and DMII management intervention among South Asian adults in Atlanta, GA. Future findings of the submitted protocol will fill an important gap on the translation and adaption of evidence-based interventions that have relevance to immigrant and minority populations. CLINICAL TRIALS REGISTRATION/BACKGROUND:NCT04263311.
PMID: 35940551
ISSN: 1559-2030
CID: 5286652

Help seeking and mental health outcomes among South Asian young adult survivors of sexual violence in the New York State Region

Lim, Sahnah; Ali, Shahmir H; Mohaimin, Sadia; Dhar, Ritu; Dhar, Moitrayee; Rahman, Farzana; Roychowdhury, Liza; Islam, Tanzeela; Islam, Nadia
BACKGROUND:Sexual violence is a growing issue faced across diverse South Asian American communities under the backdrop of a distinct religious and cultural environment that intersects with the ability to prevent and manage this public health crisis. There is also growing attention on sexual violence experienced by younger or second-generation South Asian Americans, although little is known on the prevalence of this violence and its impact on health outcomes. Using data from a community-driven sexual violence survey, this study describes the experience of sexual violence and related help seeking behaviors and mental health outcomes among 18-34-year-old South Asian Americans living near the New York (NY) State region. METHODS:Participants were recruited via social media to participate in an anonymous survey developed in partnership with an advisory board of South Asian young adult representatives. Data was analyzed descriptively and through adjusted logistic regression models. RESULTS:Overall, responses from 335 sexual assault survivors were analyzed. Types of assault experienced included no-contact (97.6%), contact (75.2%), rape attempts (50.2%), rape (44.6%), and multiple rape (19.6%). Many reported perpetrators were South Asian (65.1%) or family members (25.1%). Only 27.6% indicated they had reported assaults to authorities or received services. In adjusted analyses, odds of help seeking were higher among participants who were older (AOR:1.10, 95%CI:1.02-1.20), were a sexual minority (lesbian, gay, bisexual) (1.98, 1.05-3.71), had a family member as the perpetrator (1.85, 1.01-3.40), had lower disclosure stigma (1.66, 1.16-2.44), and experienced depression (2.16, 1.10-4.47). Odds of depression were higher among sexual minority participants and lower among those with higher sexual assault disclosure stigma (3.27, 1.61-7.16; 0.68, 0.50-0.93). CONCLUSIONS:Findings call for greater targeted policy interventions to address the prevention of sexual violence among young South Asian Americans and greater focus on improving help seeking behaviors and improving mental health outcomes among survivors.
PMCID:9174918
PMID: 35676672
ISSN: 1471-2458
CID: 5277742

Associations between Spiritual Health Locus of Control, Perceived Discrimination and Breast and Cervical Cancer Screening for Muslim American Women in New York City

Azhar, Sameena; Wyatt, Laura C; Jokhakar, Vaidehi; Patel, Shilpa; Raveis, Victoria H; Kwon, Simona C; Islam, Nadia S
BACKGROUND:We sought to understand the impacts of religion-related factors, namely perceived discrimination and spiritual health locus of control, on breast and cervical cancer screening for Muslim American women. METHODS:A total of 421 Muslim American women were surveyed at baseline of a breast and cervical cancer screening intervention, measuring discrimination through the Perceived Ethnic Discrimination Questionnaire (PED-Q), a 17-item scale measuring perceived interpersonal racial/ethnic discrimination; and spiritual beliefs through the Spiritual Health Locus of Control Scale, a 13-item scale measuring the link between control over one's health with a connection to religious beliefs. Multivariable logistic regression models were used to determine factors associated with an up-to-date mammogram and Pap test. RESULTS:Most women preferred to receive medical care from a healthcare provider of their same gender (75.2%) and same race, ethnicity or religion (62.1%). The middle age group (50-59) and a lower God's Grace Spiritual Health Locus of Control subscale were associated with up-to-date mammogram. Younger age, lower education, higher Exclusion/Rejection subscale, and lower Spiritual Life/Faith Subscale were associated with an up-to-date Pap test. CONCLUSION/CONCLUSIONS:The spiritual beliefs of Muslim American women impact their likelihood of obtaining breast and cervical cancer screenings. Therefore, these services need to be better tailored to match these needs, for example, by ensuring that Muslim American women have access to healthcare providers of their same gender, race, ethnicity or religion.
PMID: 35078722
ISSN: 1938-0666
CID: 5147532