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With funding from the National Institutes of Health's Community Engagement Alliance, starting in fall 2020, 11 academic medical centers and 75 community partners came together as the California Alliance Against COVID-19 to address COVID-19 inequities in California. Using data from focus groups, statewide meetings, and a statewide partner survey, we describe how promotoras and community health workers (P/CHWs; n = 540) helped to promote access to COVID-19 information, testing, and vaccination. We highlight opportunities to promote health equity among other public health collaborators with a P/CHW model. (Am J Public Health. 2024;114(S1):S45-S49. https://doi.org/10.2105/AJPH.2023.307471).

IntroductionFlavoured tobacco control policy exemptions and electronic cigarette products may contribute to increased youth access and tobacco use disparities.MethodsWe assessed public support among California Central Valley residents for four policies to regulate flavoured tobacco products and e-cigarettes. The probability-based, multimode survey was conducted with English-speaking and Spanish-speaking registered voters (n=845) across 11 counties between 13 and 18 August 2020. Weighted logistic regression analyses measured odds of policy support, adjusting for predictor variables (attitudes and beliefs) and covariates.ResultsThe weighted sample was 50% female and predominantly Latino (30%) or non-Hispanic white (46%); 26% had a high school education or less, and 22% an annual household income DiscussionFindings add to mounting evidence of support for policies to regulate flavoured tobacco and e-cigarette products. Results on attitudes and beliefs elucidate how these factors influence support.

The COVID-19 pandemic revealed weaknesses in the public health infrastructure of the United States, including persistent barriers to engaging marginalized communities toward inclusion in clinical research, including trials. Inclusive participation in clinical trials is crucial for promoting vaccine confidence, public trust, and addressing disparate health outcomes. A long-standing body of literature describes the value of community-based participatory research in increasing marginalized community participation in research. Community-based participatory research emphasizes shared leadership with community members in all phases of the research process, including in the planning and implementation, interpretation, and dissemination. Shared leadership between academic and industry with marginalized communities can assist with inclusive participation in vaccine trials and increase public trust in the development of the vaccines and other therapies used during public emergencies. Nevertheless, epidemiologic and clinical research do not yet have a strong culture of community partnership in the scientific process, which takes time to build and therefore may be difficult to develop and rapidly scale to respond to the pandemic. We outline practices that contribute to a lack of inclusive participation and suggest steps that trialists and other researchers can take to increase marginalized communities' participation in research. Practices include planning for community engagement during the planning and recruitment phases, having regular dialogues with communities about their priorities, supporting them throughout a study, and navigating complex structural determinants of health. Additionally, we discuss how research institutions can support inclusive practices by reexamining their policies to increase participation in clinical trials and instilling institutional trustworthiness.

ObjectiveTo describe the early activities and lessons of the Share, Trust, Organize, Partner COVID-19 California Alliance (STOP COVID-19 CA), the California awardee of the NIH-funded multi-state Community Engagement Alliance (CEAL) against COVID-19. The Alliance was established to ensure equity in Coronavirus-19 disease (COVID-19) research, clinical practice, and public health for communities most impacted by the COVID-19 pandemic.Study settingThe STOP COVID-19 CA Alliance network of 11 universities and affiliated partner community-based organizations (CBOs) across California.Study designMixed methods evaluation consisting of an analysis of activity (August 2020 to December 2021) detailed in reports submitted by community-academic teams and a survey (August 2021) of academic investigators and affiliated community-based organization (CBO) partners.Data collectionWe summarized activities from the 11 community-academic teams' progress reports and described results from an online survey of academic investigators and CBO partners in the California Alliance.Principal findingsA review of progress reports (n = 256) showed that teams fielded surveys to 11,000 Californians, conducted 133 focus groups, partnered with 29 vaccine/therapeutics clinical trials, and led more than 300 town halls and vaccine events that reached Californians from communities disproportionately impacted by COVID-19. Survey responses from academic investigators and CBO partners emphasized the importance of learning from the successes and challenges of the California Alliance teams' COVID-19 initiatives. Both academic and CBO respondents highlighted the need for streamlined federal and institutional administrative policies, and fiscal practices to promote more effective and timely operations of teams in their efforts to address the numerous underlying health and social disparities that predispose their communities to higher rates of, and poor outcomes from, COVID-19.ConclusionsSTOP COVID-19 CA represents a new and potentially sustainable statewide community engagement model for addressing health disparities in multiethnic/multicultural and geographically dispersed communities.

Vietnamese American males have high smoking rates. This study explored social support mechanisms provided by lay health workers (LHWs) and family members through a smoking cessation intervention. Eight focus groups (N = 54) were conducted in Vietnamese stratified by intervention arms (Tobacco [experimental] and healthy living [control]) with 18 smokers, 18 family members, and 18 LHWs. Smokers reported feeling more accountable for their health behaviors, and smoking changes were reinforced by family members, peers, and LHWs through conversations facilitated during and outside the program. Culturally appropriate interventions with multiple social support mechanisms may reduce smoking in minority populations.

Immigrants tend to live in areas with higher co-ethnic density, and the effect of neighborhood ethnic composition could be particularly salient for health. This study explored associations between neighborhood ethnic composition and self-rated health among Asian immigrants. We analyzed data collected at baseline from 670 Chinese and Vietnamese immigrants enrolled in a lifestyle intervention trial. Residential addresses were geocoded and combined with neighborhood socio-demographic profiles based on census data. We used generalized estimating equations to examine neighborhood ethnic composition and self-rated health. Independent of individual-level factors, living in neighborhoods more densely populated by whites was associated with poor/fair self-rated health. Neighborhood household income and density of participants' own ethnic group were not associated with poor/fair self-rated health. More research is warranted to disentangle reasons why Chinese and Vietnamese immigrants living in white-concentrated neighborhoods reported poorer self-rated health, including investigating effects of discrimination, relative deprivation, and availability of social resources.

IntroductionSmoking prevalence is disproportionately high among Asian American immigrant men with limited English proficiency. Understanding the role of family support may provide insights on culturally acceptable strategies to promote smoking cessation.AimsThis study examined how family support was associated with readiness to consider smoking cessation among Chinese and Vietnamese American male daily smokers.MethodsWe analyzed baseline data (N=340) from a cluster randomized trial of a family-based healthy lifestyle intervention. We assessed the frequency of receiving family support in various forms (encouraging use of cessation resources; praising efforts; checking-in; reminding of familial role). Multiple regression analysis was used to determine associations between family support areas and readiness to consider smoking cessation, controlling for covariates.Results/findingsReporting a higher frequency of receiving praise and encouragement for one's efforts to quit was positively associated with readiness to consider cessation. Other areas of family support were not significant.ConclusionsThese findings provide evidence to explore specific areas of family support in enhancing Asian American smokers' readiness to consider cessation. As there is high interest from Asian American family members to support their smokers for quitting, culturally specific and acceptable strategies are needed to promote smoking cessation among Asian Americans.

BackgroundRegular mammogram screening for eligible average risk women has been associated with early detection and reduction of cancer morbidity and mortality. Delayed follow-up and resolution of abnormal mammograms limit early detection efforts and can cause psychological distress and anxiety.ObjectiveThe goal of this study was to gain insight from women's narratives into how organizational factors related to communication and coordination of care facilitate or hinder timely follow-up for abnormal mammogram results.DesignWe conducted 61 qualitative in-person interviews with women from four race-ethnic groups (African American, Chinese, Latina, and White) in three different healthcare settings (academic, community, and safety-net).ParticipantsEligible participants had an abnormal mammogram result requiring breast biopsy documented in the San Francisco Mammography Registry in the previous year.ApproachInterview narratives included reflections on experience and suggested improvements to communication and follow-up processes. A grounded theory approach was used to identify themes across interviews.Key resultsParticipants' experiences of follow-up and diagnosis depended largely on communication processes. Twenty-one participants experienced a follow-up delay (> 30 days between index mammogram and biopsy). Organizational factors, which varied across different institutions, played key roles in effective communication which included (a) direct verbal communication with the ability to ask questions, (b) explanation of medical processes and terminology avoiding jargon, and (c) use of interpretation services for women with limited English proficiency.ConclusionHealth organizations varied in their processes for abnormal results communication and availability of support staff and interpretation services. Women who received care from institutions with more robust support staff, such as bilingual navigators, more often than not reported understanding their results and timely abnormal mammogram follow-up. These reports were consistent across women from diverse ethnic groups and suggest the value of organizational support services between an abnormal mammogram and resolution for improving follow-up times and minimizing patient distress.

Numerous studies have assessed individual-level factors associated with intention to quit smoking. However, fewer studies have assessed how neighborhood and built environment also contribute towards individual-level behavior. We used baseline data of 340 Chinese and Vietnamese male daily smokers from August 2015 to November 2017 living in the San Francisco Bay Area, who enrolled in a lifestyle intervention trial. The outcome variable was intention to quit in 30 days. To understand the role of contextual factors participants' residential addresses were geocoded, and neighborhood median income, ethnic composition, and tobacco retail density were computed. Individual level analysis suggested that Vietnamese American men had greater intention to quit smoking (OR = 2.90 CI = 1.59, 5.26) in comparison to Chinese Americans. However, after adding neighborhood level factors to the model, no ethnic group difference was observed. Neighborhood household median income (OR = 0.74, CI = 0.64, 0.86) and tobacco retail counts (OR = 0.79, CI = 0.67, 0.94) were negatively associated with intention to quit. Years lived in the U.S. was the only individual level factor associated with intention to quit. By comparing two Asian American groups that live in heterogeneous neighborhoods, we identify key environmental and policy drivers that are associated with quit intention. Future studies aimed at influencing individual-level behavior should take into consideration the neighborhood context and built environment characteristics.

Prior studies have supported the effectiveness of the use of Lay Health Workers (LHWs) as an intervention model for managing chronic health conditions, yet few have documented the mechanisms that underlie the effectiveness of the interventions. This study provides a first look into how LHWs delivered a family-based intervention and the challenges encountered. We utilize observation data from LHW-led educational sessions delivered as part of a randomized controlled trial (RCT) designed to test a LHW outreach family-based intervention to promote smoking cessation among Vietnamese American smokers. The RCT included experimental (smoking cessation) and control (healthy living) arms. Vietnamese LHWs were trained to provide health information in Vietnamese to groups of family dyads (smoker and family member). Bilingual, bicultural research team members conducted unobtrusive observations in a subset of LHW educational sessions and described the setting, process and activities in structured fieldnotes. Two team members coded each fieldnote following a grounded theory approach. We utilized Atlas.ti qualitative software to organize coding and facilitate combined analysis. Findings offer a detailed look at the 'black box' of how LHWs work with their participants to deliver health messages. LHWs utilized multiple relational strategies, including preparing an environment that enables relationship building, using recognized teaching methods to engage learners and co-learners as well as using humor and employing culturally specific strategies such as hierarchical forms of address to create trust. Future research will assess the effectiveness of LHW techniques, thus enhancing the potential of LHW interventions to promote health among underserved populations.

IntroductionSmoking prevalence remains high among Asian American immigrant men, particularly those with limited English proficiency. Understanding ways to promote serious quit attempts (defined as a quit attempt lasting at least 24 h) could be crucial for reducing tobacco-related health disparities in this population. This study examines correlates of serious past year quit attempts among Chinese and Vietnamese American male daily smokers.MethodsBaseline survey data were collected between 2015 and 2017 from a lifestyle intervention trial (N = 340 Chinese and Vietnamese male daily smokers). Data analysis was conducted in 2019. Multivariable logistic regression analysis was used to identify factors associated with serious past year quit attempts.ResultsLess than half (43.2%) of the study participants had at least one serious past year quit attempt. Significant correlates of serious quit attempts included utilizing evidence-based methods (OR = 12.83, 95% CI 5.17-31.84) or other methods (OR = 3.92, 95% CI 3.92-13.73) to facilitate quitting compared to those who did not attempt to quit. Also, participants who had a physician encounter in the past year were more likely to have had a serious quit attempt (OR = 2.25, 95% CI 1.12-4.53). Discussing smoking during a past year doctor's visit, however, was not a significant correlate of serious quit attempts.ConclusionsOur findings underscore the importance of promoting the use of smoking cessation resources, and potentially utilizing healthcare encounters to facilitate cessation. Investigations are warranted to understand better how patient-physician interactions can enhance smoking cessation.

ObjectiveEvaluate a community-based navigator intervention to increase breast cancer patients' and survivors' access to information about health research participation opportunities.MethodsIn the context of a Community Based Participatory Research collaboration, we conducted a prospective randomized controlled trial of the Health Research Engagement Intervention with pre- and post-intervention surveys (n = 133). The primary outcome was health research information-seeking behavior. Secondary outcomes were health research knowledge, willingness to participate in health research, and health empowerment. Qualitative interviews (n = 11) elucidated participant perspectives on the intervention.ResultsThere was no statistically significant difference between intervention and control groups' information-seeking behavior. Knowledge that not all health research studies are about drugs or treatments increased significantly from pre- to post-test among intervention group participants (32% to 48%, p = 0.012), but not in the control group (43% to 30%, p = 0.059); the difference between arms was statistically significant (p = 0.0012). Although survey responses indicated willingness to participate, qualitative interviews identified competing priorities that limited participants' motivation to seek enrollment information.Conclusions and practice implicationsCommunity-based navigators are a trusted, and therefore promising link between health research and low-income underserved communities. However, systemic barriers in health research infrastructures need to be addressed to include low income, LEP and immigrant populations.

Our paper explores how legal status stratification shapes the health and health care of low-income patients with chronic illnesses in the U.S. healthcare safety net. Drawing on data from over two years of ethnographic fieldwork at urban safety-net clinics, we examine efforts by Complex Care Management (CCM) teams to stabilize patients with uncontrolled chronic illnesses through primary care-integrated support. We show that stratified citizenship and geographic variability correspond to different possibilities for health care. We suggest an approach to immigration as a structural determinant of health that accounts for the complex, stratified, and changing nature of citizenship status. We also highlight how geographical differences and interactions among local, state, and federal policies support the notion that citizenship is stratified across multiple tiers with distinctive possibilities and constraints for health. While county-based health plans at each of the study sites include residents with varying legal status, lack of formal legal status remains a substantial obstacle to care. Many immigrants are unable to take full advantage of primary and specialty care, resulting in unnecessary morbidity and mortality. In some cases, patients have returned to their country of origin to die. While CCM teams provide an impressive level of support to assist immigrant patients in navigating healthcare and immigration bureaucracies, legal and geographic stratification limit their ability to address broader aspects of these patients' social context.

Prior studies have supported the effectiveness of the use of Lay Health Workers (LHWs) as an intervention model for managing chronic health conditions, yet few have documented the mechanisms that underlie the effectiveness of the interventions. This study provides a first look into how LHWs delivered a family-based intervention and the challenges encountered. We utilize observation data from LHW-led educational sessions delivered as part of a randomized controlled trial (RCT) designed to test a LHW outreach family-based intervention to promote smoking cessation among Vietnamese American smokers. The RCT included experimental (smoking cessation) and control (healthy living) arms. Vietnamese LHWs were trained to provide health information in Vietnamese to groups of family dyads (smoker and family member). Bilingual, bicultural research team members conducted unobtrusive observations in a subset of LHW educational sessions and described the setting, process and activities in structured fieldnotes. Two team members coded each fieldnote following a grounded theory approach. We utilized Atlas.ti qualitative software to organize coding and facilitate combined analysis. Findings offer a detailed look at the 'black box' of how LHWs work with their participants to deliver health messages. LHWs utilized multiple relational strategies, including preparing an environment that enables relationship building, using recognized teaching methods to engage learners and co-learners as well as using humor and employing culturally specific strategies such as hierarchical forms of address to create trust. Future research will assess the effectiveness of LHW techniques, thus enhancing the potential of LHW interventions to promote health among underserved populations.

This article explores the complicated and often-contradictory notions of choice at play in complex care management (CCM) programmes in the US healthcare safety net. Drawing from longitudinal data collected over two years of ethnographic fieldwork at urban safety-net clinics, our study examines the CCM goal of transforming frequent emergency department (ED) utilisers into 'active' patients who will reduce their service utilisation and thereby contribute to a more rational, cost-effective healthcare system. By considering our data alongside philosopher Annemarie Mol's (2008) conceptualisation of the competing logics of choice and care, we argue that these premises often undermine CCM teams' efforts to support patients and provide the care they need - not only to prevent medical crises, but to overcome socio-economic barriers as well. We assert that while safety-net CCM programmes are held accountable for the degree to which their patients successfully transform into self-managing, cost-effective actors, much of the care CCM staff provide in fact involves attempts to intervene on structural obstacles that impinge on patient choice. CCM programmes thus struggle between an economic imperative to get patients to make better health choices and a moral imperative to provide care in the face of systemic societal neglect. (A virtual abstract of this paper can be viewed at: https://www.youtube.com/channel/UC_979cmCmR9rLrKuD7z0ycA).

We sought to examine the literature using the Patient Activation Measure (PAM) or the Patient Enablement Instrument (PEI) with high-need, high-cost (HNHC) patients receiving care in urban safety net settings. Urban safety net care management programs serve low-income, racially/ethnically diverse patients living with multiple chronic conditions. Although many care management programs track patient progress with the PAM or the PEI, it is not clear whether the PAM or the PEI is an effective and appropriate tool for HNHC patients receiving care in urban safety net settings in the United States. We searched PubMed, EMBASE, Web of Science, and PsycINFO for articles published between 2004 and 2015 that used the PAM and between 1998 and 2015 that used the PEI. The search was limited to English-language articles conducted in the United States and published in peer-reviewed journals. To assess the utility of the PAM and the PEI in urban safety net care settings, we defined a HNHC patient sample as racially/ethnically diverse, low socioeconomic status (SES), and multimorbid. One hundred fourteen articles used the PAM. All articles using the PEI were conducted outside the U.S. and therefore were excluded. Nine PAM studies (8%) included participants similar to those receiving care in urban safety net settings, three of which were longitudinal. Two of the three longitudinal studies reported positive changes following interventions. Our results indicate that research on patient activation is not commonly conducted on racially and ethnically diverse, low SES, and multimorbid patients; therefore, there are few opportunities to assess the appropriateness of the PAM in such populations. Investigators expressed concerns with the potential unreliability and inappropriate nature of the PAM on multimorbid, older, and low-literacy patients. Thus, the PAM may not be able to accurately assess patient progress among HNHC patients receiving care in urban safety net settings. Assessing progress in the urban safety net care setting requires measures that account for the social and structural challenges and competing demands of HNHC patients.

In this paper, we delineate how staff of two complex care management (CCM) programs in urban safety net hospitals in the United States understand trauma. We seek to (1) describe how staff in CCM programs talk about trauma in their patients' lives; (2) discuss how trauma concepts allow staff to understand patients' symptoms, health-related behaviors, and responses to care as results of structural conditions; and (3) delineate the mismatch between long-term needs of patients with histories of trauma and the short-term interventions that CCM programs provide. Observation and interview data gathered between February 2015 and August 2016 indicate that CCM providers define trauma expansively to include individual experiences of violence such as childhood abuse and neglect or recent assault, traumatization in the course of accessing health care and structural violence. Though CCM staff implement elements of trauma-informed care, the short-term design of CCM programs puts pressure on the staff to titrate their efforts, moving patients towards graduation or discharge. Trauma concepts enable clinicians to name structural violence in clinically legitimate language. As such, trauma-informed care and structural competency approaches can complement each other.

Increasing "patient engagement" has become a priority for health care organizations and policy-makers seeking to reduce cost and improve the quality of care. While concepts of patient engagement have proliferated rapidly across health care settings, little is known about how health care providers make use of these concepts in clinical practice. This paper uses 20 months of ethnographic and interview research carried out from 2015 to 2016 to explore how health care providers working at two public, urban, safety-net hospitals in the United States define, discuss, and assess patient engagement. We investigate how health care providers describe engagement for high cost patients-the "super-utilizers" of the health care system-who often face complex challenges related to socioeconomic marginalization including poverty, housing insecurity, exposure to violence and trauma, cognitive and mental health issues, and substance use. The health care providers in our study faced institutional pressure to assess patient engagement and to direct care towards engaged patients. However, providers considered such assessments to be highly challenging and oftentimes inaccurate, particularly because they understood low patient engagement to be the result of difficult socioeconomic conditions. Providers tried to navigate the demand to assess patient engagement in care by looking for explicit positive and negative indicators of engagement, while also being sensitive to more subtle and intuitive signs of engagement for marginalized patients.

The goal of this project was to explore family communication dynamics and their implications for smoking cessation. We conducted 39 in-depth dyadic and individual qualitative interviews with 13 immigrant smoker-family member pairs of Vietnamese ( n = 9 dyads, 18 individuals) and Chinese ( n = 4 dyads, 8 individuals) descent, including seven current and six former smokers and 13 family members. All 13 dyadic and 26 individual interviews were analyzed using a collaborative crystallization process as well as grounded theory methods. We identified three interrelated pathways by which tobacco use in immigrant Vietnamese and Chinese families impacts family processes and communication dynamics. Using a two-dimensional model, we illustrate how the shared consequences of these pathways can contribute to a dynamic of avoidance and noncommunication, resulting in individual family members "suffering in silence" and ultimately smoking being reinforced. We discuss the implications of these findings for development of smoking cessation interventions.

PurposeDespite the Institute of Medicine's (IOM) 2005 recommendation, few care organizations have instituted standard survivorship care plans (SCPs). Low health literacy and low English proficiency are important factors to consider in SCP development. Our study aimed to identify information needs and survivorship care plan preferences of low literacy, multi-lingual patients to support the transition from oncology to primary care and ongoing learning in survivorship.MethodsWe conducted focus groups in five languages with African American, Latina, Russian, Filipina, White, and Chinese medically underserved breast cancer patients. Topics explored included the transition to primary care, access to information, knowledge of treatment history, and perspectives on SCPs.ResultsAnalysis of focus group data identified three themes: 1) the need for information and education on the transition between "active treatment" and "survivorship"; 2) information needed (and often not obtained) from providers; and 3) perspectives on SCP content and delivery.ConclusionsOur data point to the need to develop a process as well as written information for medically underserved breast cancer patients. An SCP document will not replace direct communication with providers about treatment, symptom management and transition, a communication that is missing in participating safety-net patients' experiences of cancer care. Women turned to peer support and community-based organizations in the absence of information from providers.Implications for cancer survivors"Clear and effective" communication of survivorship care for safety-net patients requires dedicated staff trained to address wide-ranging information needs and uncertainties.

IntroductionSmoking prevalence is high among limited English-proficient Chinese and Vietnamese American men, who are frequently unmotivated to quit and who underutilize smoking cessation resources. This study applied lay health worker outreach to leverage peer and family networks to promote smoking cessation among these men.MethodsWe integrated qualitative formative research findings and Social Network Theory to develop a social-network family-focused intervention. In a pilot single-group trial, 15 lay health workers recruited 96 dyads (N = 192, 75% Vietnamese) of Chinese or Vietnamese male daily smokers and their family members and delivered the intervention consisting of two small group education sessions and two individual telephone calls over 2 months.ResultsAt baseline, 42% of smokers were at precontemplation. At 3 months following the initiation of the intervention, 7-day and 30-day point prevalence smoking abstinence rates as reported by smokers and independently corroborated by family members were 30% and 24%, respectively. Utilization of smoking cessation resources (medication, quitline, physician's advice) increased from 2% to 60% (P < .001). Findings showed high acceptability of the intervention as it facilitated learning about tobacco-related health risks and cessation resources, and communications between smokers and their families.ConclusionsThis novel social network family-focused intervention to promote smoking cessation among Chinese and Vietnamese smokers appears to be acceptable, feasible, and potentially efficacious. Findings warrant evaluation of long-term efficacy of the intervention in a larger scale randomized controlled trial.

ObjectivesThe FDA approved the first human papillomavirus (HPV) vaccine in 2006. Research into parental decision-making and concerns about HPV vaccination highlights questions about parenting and parents' role in the crafting of their daughters' future sexuality. In contrast to much of this literature, we explore narratives from interviews with Cambodian mothers of HPV vaccine-age eligible daughters who experienced genocide and came to the USA as refugees.DesignWe conducted in-depth, in-person interviews with 25 Cambodian mothers of HPV vaccine-age eligible daughters. Interviews were conducted in Khmer and translated into English for analysis. We followed standard qualitative analysis techniques including iterative data review, multiple coders, and 'member checking.' Five members of the research team reviewed all transcripts and two members independently coded each transcript for concepts and themes.ResultsInterview narratives highlight the presence of the past alongside desires for protection from uncertain futures. We turn to Quesada and colleagues' concept structural vulnerability to outline the constraints posed by these women's positionalities as genocide survivors when faced with making decisions in an area with which they have little direct knowledge or background: cervical cancer prevention.ConclusionOur study sheds light on the prioritization of various protective health practices, including but not exclusive to HPV vaccination, for Khmer mothers, as well as the rationalities informing decision-making regarding their daughters' health.

The Health Research Engagement Intervention (HREI) aims to reduce information and access disparities for breast cancer research opportunities among low-socioeconomic status (SES) and limited English proficient (LEP) breast cancer survivors by providing neutral, non-trial-specific information about health research via a trusted patient navigator. Qualitative methods in the context of a community-based participatory research design were used to iteratively design the HREI in collaboration with community-based care navigators from a trusted community organization, Shanti Project, and to locate appropriate research studies in collaboration with a web-based trial-matching service, BreastCancerTrials.org (BCT). Navigators were first trained in clinical trials and health research and then to deliver the HREI, providing feedback that was incorporated into both the HREI design and BCT's interface. Our intervention pilot with low SES and LEP survivors (n = 12) demonstrated interest in learning about "health research." All 12 participants opted to obtain more information when offered the opportunity. Post-intervention questionnaires showed that three of 11 (27 %) participants independently pursued additional information about research opportunities either online or by phone in the week following the intervention. Post-intervention navigator questionnaires indicated that navigators could confidently and efficiently deliver the intervention. LEP patients who pursued information independently faced language barriers. The HREI is a promising and potentially scalable intervention to increase access to neutral information about breast cancer research opportunities for low-SES and LEP individuals. However, in order for it to be effective, systems barriers to participation such as language accessibility at sources of health research information must be addressed.

BackgroundBreast cancer mortality rates in the U.S. remain relatively high, particularly among ethnic minorities and low-income populations. Unequal access to quality care, lower follow up rates, and poor treatment adherence contribute to rising disparities among these groups. Healthcare empowerment (HCE) is theorized to improve patient outcomes through collaboration with providers and improving understanding of and compliance with treatment. Patient navigation is a health care organizational intervention that essentially improves healthcare empowerment by providing informational, emotional, and psychosocial support. Patient navigators address barriers to care through multilingual coordination of treatment and incorporation of access to community services, support, and education into the continuum of cancer care.MethodsUtilizing survey and qualitative methods, we evaluated the patient navigation program in a Northern California safety-net hospital Breast Clinic by assessing its impact on patients' experiences with cancer care and providers' perspectives on the program. We conducted qualitative interviews with 16 patients and 4 service providers, conducted approximately 66 hours of clinic observations, and received feedback through the self-administered survey from 66 patients.ResultsThe role of the patient navigator at the Breast Clinic included providing administrative assistance, psychosocial support, improved knowledge, better understanding of treatment process, and ensuring better communication between patients and providers. As such, patient navigators facilitated improved collaboration between patients and providers and understanding of interdisciplinary care processes. The survey results suggested that the majority of patients across all ethnic backgrounds and age groups were highly satisfied with the program and had a positive perception of their navigator. Interviews with patients and providers highlighted the roles of a navigator in ensuring continuity of care, improving treatment completion rates, and reducing providers' workload and waiting time. Uncertainty about the navigator's role among the patients was a weakness of the program.ConclusionsPatient navigation in the Breast Clinic had a positive impact on patients' experiences with care and healthcare empowerment. Clarifying uncertainties about the navigators' role would aid successful outcomes.

BackgroundApproximately 20% of adult cancer patients are eligible to participate in a clinical trial, but only 2.5-9% do so. Accrual is even less for minority and medically underserved populations. As a result, critical life-saving treatments and quality of life services developed from research studies may not address their needs. This study questions the utility of the bioethical concern with therapeutic misconception (TM), a misconception that occurs when research subjects fail to distinguish between clinical research and ordinary treatment, and therefore attribute therapeutic intent to research procedures in the safety net setting. This paper provides ethnographic insight into the ways in which research is discussed and related to standard treatment.MethodsIn the course of two years of ethnographic fieldwork in a safety net hospital, I conducted clinic observations (n=150 clinic days) and in-depth in-person qualitative interviews with patients (n=37) and providers (n=15). I used standard qualitative methods to organize and code resulting fieldnote and interview data.ResultsFindings suggest that TM is limited in relevance for the interdisciplinary context of cancer clinical trial recruitment in the safety net setting. Ethnographic data show the value of the discussions that happen prior to the informed consent, those that introduce the idea of participation in research. These preliminary discussions are elemental especially when recruiting underserved and vulnerable patients for clinical trial participation who are often unfamiliar with medical research and how it relates to medical care. Data also highlight the multiple actors involved in research discussions and the ethics of social justice and patient advocacy they mobilize, suggesting that class, inequality, and dependency influence the forms of ethical engagements in public hospital settings.ConclusionOn the ground ethics of social justice and patient advocacy are more relevant than TM as guiding ethical principles in the context of ongoing cancer disparities and efforts to diversify clinical trial participation.

Cervical cancer incidence rates vary substantially among racial/ethnic groups in the United States (US) with women of Southeast Asian descent having the highest rates. Up to 70 % of cervical cancers could be prevented by widespread use of the human papillomavirus (HPV) vaccine. However, there is a lack of information about HPV vaccine uptake among Southeast Asian girls in the US. We conducted a telephone survey of Cambodian women with daughters who were age-eligible for HPV vaccination. Survey items addressed HPV vaccination barriers, facilitators and uptake. Our study group included 86 Cambodian mothers who lived in the Seattle metropolitan area. The proportions of survey participants who reported their daughter had initiated and completed the HPV vaccine series were only 29 and 14 %, respectively. Higher levels of vaccine uptake were significantly associated with mothers having heard about the HPV vaccine from a health professional and having received a recent Pap test. Commonly cited barriers to HPV vaccination included lack of knowledge about the HPV vaccine, not having received a physician recommendation for HPV vaccination and thinking the HPV vaccine is unnecessary in the absence of health problems. Linguistically and culturally appropriate HPV educational programs should be developed and implemented in Cambodian American communities. These programs should aim to enhance understanding of disease prevention measures, increase knowledge about the HPV vaccine and empower women to ask their daughter's doctors for HPV vaccination.

San Francisco Bay Area Filipinas with breast cancer underutilize support services. Our partnership engaged in community-based participatory research (CBPR) that involved formation of a community advisory board (CAB) representing low-income, low-English-proficient Filipinas with breast cancer. While CABs are a standard component of CBPR projects, the process of establishing and fostering CAB involvement has been under studied. This commentary explores the process our team used-building upon the Filipino cultural method of pakikisama which stresses making the other feel welcome, safe, and nurtured-to overcome barriers to active engagement. Challenges included minimizing power imbalances between the research team and CAB, and the establishment of an environment of familiarity, trust and caring among CAB members. We recorded all CAB meetings, transcribed them verbatim, and Tagalog portions were transcribed into English for analysis. Mobilizing pakikisama supported partnership building and allowed CAB members to engage in inclusive dialogue and formulate a culturally relevant support model.

IntroductionHepatitis B infection is 5 to 12 times more common among Asian Americans than in the general US population and is the leading cause of liver disease and liver cancer among Asians. The purpose of this article is to describe the step-by-step approach that we followed in community-based participatory research projects in 4 Asian American groups, conducted from 2006 through 2011 in California and Washington state to develop theoretically based and culturally appropriate interventions to promote hepatitis B testing. We provide examples to illustrate how intervention messages addressing identical theoretical constructs of the Health Behavior Framework were modified to be culturally appropriate for each community.MethodsIntervention approaches included mass media in the Vietnamese community, small-group educational sessions at churches in the Korean community, and home visits by lay health workers in the Hmong and Cambodian communities.ResultsUse of the Health Behavior Framework allowed a systematic approach to intervention development across populations, resulting in 4 different culturally appropriate interventions that addressed the same set of theoretical constructs.ConclusionsThe development of theory-based health promotion interventions for different populations will advance our understanding of which constructs are critical to modify specific health behaviors.

IntroductionPopulation-based studies have reported high rates of smoking prevalence among Chinese and Vietnamese American men. Although nicotine replacement therapy (NRT) is effective, recommended, and accessible without prescription, these populations underuse NRT for smoking cessation. The aim of this study was to assess understanding and use of NRT and nonpharmacologic treatments among Chinese and Vietnamese American male smokers and their families.MethodsIn-depth qualitative interviews were conducted with 13 smoker-family pairs, followed by individual interviews with each participant. A total of 39 interviews were conducted in Vietnamese or Chinese, recorded, translated, and transcribed into English for analysis.ResultsFour themes were identified: use and understanding of NRT, nonpharmacologic strategies, familial and religious approaches, and willpower. Both smokers and their family members believed strongly in willpower and a sense of personal responsibility as the primary drivers for stopping smoking. Lack of these 2 qualities keeps many Chinese and Vietnamese men from using NRT to quit smoking. Those who do use NRT often use it incorrectly, following their own preferences rather than product instructions.ConclusionOur findings indicate the importance of culturally appropriate patient education about NRT. It may be necessary to teach smokers and their families at an individual level about NRT as a complementary approach that can strengthen their resolve to quit smoking. At a community level, public health education on the indication and appropriate use of evidence-based smoking cessation resources, such as NRT, would be an important component of effective tobacco control.

BackgroundRacial/ethnic minority patients are less likely than non-Latino white patients to participate in cancer clinical trials. A key barrier to participation is limited health literacy which is more common among minorities. At the organizational level, it is important that clinical trials sites become better equipped to recruit minority patients by expanding their organizational health literacy including language competency and outreach efforts. We explored the characteristics of clinical trial sites that are associated with these health literate behaviors.MethodsWe identified 353 breast clinical trials recruiting participants in 2006 from four states (California, Florida, Illinois, and New York) through the National Cancer Institute Physician Data Query system. From October 2008 to November 2009, we contacted one research team member (RTM) from each site for a telephone survey to assess the site's health literate characteristics.ResultsOf 233 RTMs who responded, 93% were female and 89% were US-born. Overall, 48% of sites offered supplementary trial information, 80% offered materials to assist with patient navigation and 45% reported outreach efforts. Lower percentages offered information in other languages while 65% offered professional interpretation services. Sites with >10% limited English proficiency (LEP) patients were more likely than their counterparts to offer consent forms (OR=3.13, 1.36-7.19) and supplementary information about trials in other languages (OR=2.52, 1.15-5.52). Sites with diverse patient populations (>10% Latino) were also more likely than less diverse sites to engage in outreach (OR=1.97, 1.07-3.60), to offer consent forms (OR=2.72, 1.38-5.36), supplementary information about trials (OR=2.58, 1.24-5.36), and materials to improve patient navigation (OR=2.50, 1.22-5.13) in other languages.ConclusionsEfforts to recruit diverse participants were limited. Practice type and diversity of patient population were associated with sites' efforts to accommodate these characteristics, suggesting that sites were responsive to the needs of their patients when diversity was prevalent.