Julie Armin

The role of culture in health literacy and chronic disease screening and management.

Cultural and language differences and socioeconomic status interact with and contribute to low health literacy, defined as the inability to understand or act on medical/therapeutic instructions. Health literacy is increasingly recognized as an important factor in patient compliance, cancer screening utilization, and chronic disease outcomes. Commendable efforts have been initiated by the American Medical Association and other organizations to address low health literacy among patients. Less work has been done, however, to place health literacy in the broader context of socioeconomic and cultural differences among patients and providers that hinder communication and compliance. This review examines cultural influences on health literacy, cancer screening and chronic disease outcomes. We argue that cultural beliefs around health and illness contribute to an individual’s ability to understand and act on a health care provider’s instructions. This paper proposes key aspects of the intersection between health literacy and culturally varying beliefs about health which merit further exploration.

Online Recruitment Methods for Web-Based and Mobile Health Studies: A Review of the Literature

Background Internet and mobile health (mHealth) apps hold promise for expanding the reach of evidence-based health interventions. Research in this area is rapidly expanding. However, these studies may experience problems with recruitment and retention. Web-based and mHealth studies are in need of a wide-reaching and low-cost method of recruitment that will also effectively retain participants for the duration of the study. Online recruitment may be a low-cost and wide-reaching tool in comparison to traditional recruitment methods, although empirical evidence is limited. Objective This study aims to review the literature on online recruitment for, and retention in, mHealth studies. Methods We conducted a review of the literature of studies examining online recruitment methods as a viable means of obtaining mHealth research participants. The data sources used were PubMed, CINAHL, EbscoHost, PyscINFO, and MEDLINE. Studies reporting at least one method of online recruitment were included. A narrative approach enabled the authors to discuss the variability in recruitment results, as well as in recruitment duration and study design. Results From 550 initial publications, 12 studies were included in this review. The studies reported multiple uses and outcomes for online recruitment methods. Web-based recruitment was the only type of recruitment used in 67% (8/12) of the studies. Online recruitment was used for studies with a variety of health domains: smoking cessation (58%; 7/12) and mental health (17%; 2/12) being the most common. Recruitment duration lasted under a year in 67% (8/12) of the studies, with an average of 5 months spent on recruiting. In those studies that spent over a year (33%; 4/12), an average of 17 months was spent on recruiting. A little less than half (42%; 5/12) of the studies found Facebook ads or newsfeed posts to be an effective method of recruitment, a quarter (25%; 3/12) of the studies found Google ads to be the most effective way to reach participants, and one study showed better outcomes with traditional (eg in-person) methods of recruitment. Only one study recorded retention rates in their results, and half (50%; 6/12) of the studies recorded survey completion rates. Conclusions Although online methods of recruitment may be promising in experimental research, more empirical evidence is needed to make specific recommendations. Several barriers to using online recruitment were identified, including participant retention. These unique challenges of virtual interventions can affect the generalizability and validity of findings from Web-based and mHealth studies. There is a need for additional research to evaluate the effectiveness of online recruitment methods and participant retention in experimental mHealth studies.

Diet and Exercise Adherence and Practices Among Medically Underserved Patients With Chronic Disease Variation Across Four Ethnic Groups

Many factors interact to create barriers to dietary and exercise plan adherence among medically underserved patients with chronic disease, but aspects related to culture and ethnicity are underexamined in the literature. Using both qualitative (n = 71) and quantitative (n = 297) data collected in a 4-year, multimethod study among patients with hypertension and/or diabetes, the authors explored differences in self-reported adherence to diet and exercise plans and self-reported daily diet and exercise practices across four ethnic groups—Whites, Blacks, Vietnamese, and Latinos—at a primary health care center in Massachusetts. Adherence to diet and exercise plans differed across ethnic groups even after controlling for key sociodemographic variables, with Vietnamese participants reporting the highest adherence. Food and exercise options were shaped by economic constraints as well as ethnic and cultural familiarity with certain foods and types of activity. These findings indicate that health care providers should consider ethnicity and economic status together to increase effectiveness in encouraging diverse populations with chronic disease to make healthy lifestyle changes.

The Ethical Self-Fashioning of Physicians and Health Care Systems in Culturally Appropriate Health Care

Diverse advocacy groups have pushed for the recognition of cultural differences in health care as a means to redress inequalities in the U.S., elaborating a form of biocitizenship that draws on evidence of racial and ethnic health disparities to make claims on both the state and health care providers. These efforts led to federal regulations developed by the U.S. Office of Minority Health requiring health care organizations to provide Culturally and Linguistically Appropriate Services. Based on ethnographic research at workshops and conferences, in-depth interviews with cultural competence trainers, and an analysis of postings to a moderated listserv with 2,000 members, we explore cultural competence trainings as a new type of social technology in which health care providers and institutions are urged to engage in ethical self-fashioning to eliminate prejudice and embody the values of cultural relativism. Health care providers are called on to re-orient their practice (such as habits of gaze, touch, and decision-making) and to act on their own subjectivities to develop an orientation toward Others that is “culturally competent.” We explore the diverse methods that cultural competence trainings use to foster a health care provider’s ability to be self-reflexive, including face-to-face workshops and classes and self-guided on-line modules. We argue that the hybrid formation of culturally appropriate health care is becoming detached from its social justice origins as it becomes rationalized by and more firmly embedded in the operations of the health care marketplace.

Considerations of culture and social class for families facing cancer: the need for a new model for health promotion and psychosocial intervention.

Cancer is a family experience, and family members often have as much, or more, difficulty in coping with cancer as does the person diagnosed with cancer. Using both family systems and sociocultural frameworks, we call for a new model of health promotion and psychosocial intervention that builds on the current understanding that family members, as well as the individuals diagnosed with cancer, are themselves survivors of cancer. We argue that considering culture, or the values, beliefs, and customs of the family, including their choice of language, is necessary to understand fully a familys response to cancer. Likewise, acknowledging social class is necessary to understand how access to, and understanding of, otherwise available interventions for families facing cancer can be limited. Components of the model as conceptualized are discussed and provide guidance for psychosocial cancer health disparities research and the development of family-focused, strength-based, interventions.

Breast self-examination beliefs and practices, ethnicity, and health literacy: Implications for health education to reduce disparities.

Objective: This study aimed to quantitatively and qualitatively examine breast cancer screening practices, including breast self-examination (BSE), and health literacy among patients with chronic disease. Design: A prospective, multi-method study conducted with a targeted purposive sample of 297 patients with diabetes and/or hypertension from four ethnic groups (Latino, Vietnamese, African American, White-American) at an urban community health center. Setting: A federally qualified health center in Western Massachusetts. Methods: In our four-year study, 297 participants completed cancer knowledge, beliefs, attitudes and screening utilization scales and measures of health literacy. In addition to survey data collection, we conducted in-depth interviews, focus groups, home visits, and chronic disease diaries (n = 71). Results: In focus groups, African American, Vietnamese and Latina participants offered interviewers an unprompted demonstration of BSE, reported regular BSE use at particular times of the month, and shared positive feelings about the screening method. In a sample where approximately 93% of women have had a mammogram, many also had performed BSE (85.2%). Women with adequate health literacy were more likely than those with inadequate health literacy to rely on it. Despite being positively inclined toward BSE, Vietnamese women, who had the lowest health literacy scores in our sample, were less likely to perform BSE regularly. Conclusions: BSE seemed to be an appealing self-care practice for many women in our study, but we conclude that proper BSE practices may not be reinforced equally across ethnic groups and among patients with low health literacy.

See Me Smoke-Free: Protocol for a Research Study to Develop and Test the Feasibility of an mHealth App for Women to Address Smoking, Diet, and Physical Activity

Background This paper presents the protocol for an ongoing research study to develop and test the feasibility of a multi-behavioral mHealth app. Approximately 27 million women smoke in the US, and more than 180,000 women die of illnesses linked to smoking annually. Women report greater difficulties quitting smoking. Concerns about weight gain, negative body image, and low self-efficacy may be key factors affecting smoking cessation among women. Recent studies suggest that a multi-behavioral approach, including diet and physical activity, may be more effective at helping women quit. Guided imagery has been successfully used to address body image concerns and self-efficacy in our 3 target behaviors—exercise, diet and smoking cessation. However, it has not been used simultaneously for smoking, diet, and exercise behavior in a single intervention. While imagery is an effective therapeutic tool for behavior change, the mode of delivery has generally been in person, which limits reach. mHealth apps delivered via smart phones offer a unique channel through which to distribute imagery-based interventions. Objective The objective of our study is to evaluate the feasibility of an mHealth app for women designed to simultaneously address smoking, diet, and physical activity behaviors. The objectives are supported by three specific aims: (1) develop guided imagery content, user interface, and resources to reduce weight concern, and increase body image and self-efficacy for behavior change among women smokers, (2) program a prototype of the app that contains all the necessary elements of text, graphics, multimedia and interactive features, and (3) evaluate the feasibility, acceptability, and preliminary efficacy of the app with women smokers. Methods We created the program content and designed the prototype application for use on the Android platform in collaboration with 9 participants in multiple focus groups and in-depth interviews. We programmed and tested the application’s usability with 6 participants in preparation for an open, pre- and posttest trial. Currently, we are testing the feasibility and acceptability of the application, evaluating the relationship of program use to tobacco cessation, dietary behaviors, and physical activity, and assessing consumer satisfaction with approximately 70 women smokers with Android-based smart phones. Results The study was started January 1, 2014. The app was launched and feasibility testing began in April 1, 2015. Participants were enrolled from April 1-June 30, 2015. During that time, the app was downloaded over 350 times using no paid advertising. Participants were required to use the app “most days” for 30 days or they would be dropped from the study. We enrolled 151 participants. Of those, 78 were dropped or withdrew from the study, leaving 73 participants. We have completed the 30-day assessment, with a 92% response rate. The 90-day assessment is ongoing. During the final phase of the study, we will be conducting data analyses and disseminating study findings via presentations and publications. Feasibility will be demonstrated by successful participant retention and a high level of app use. We will examine individual metrics (eg, duration of use, number of screens viewed, change in usage patterns over time) and engagement with interactive activities (eg, activity tracking). Conclusions We will aggregate these data into composite exposure scores that combine number of visits and overall duration to calculate correlations between outcome and measures of program exposure and engagement. Finally, we will compare app use between participants and non-participants using Google Analytics.

Consistency in Attitudes Across Cancer Screenings in Medically Underserved Minority Populations

While a wide range of behavioral and psychosocial literature explores attitudes and beliefs towards cancer screenings, fewer studies examine attitudes across cancer screening types. We draw on quantitative and qualitative findings from a 4-year prospective study based at a community health center serving diverse, low-income patients. Methods included self-report surveys (n = 297), medical chart abstraction, and several qualitative methods with a subsample of participants. Participants included white, African–American, Vietnamese, and Latino patients who were diagnosed with diabetes, hypertension, or both. Patients’ attitudes (both positive and negative) towards cancer screening types were remarkably consistent across cancer screening types. These effects were stronger among men than women. Never having had a cancer screening was generally associated with more unfavorable attitudes towards all screenings. Qualitative interviews indicate the importance of information circulated through social networks in shaping attitudes towards cancer screenings. Condensed abstract: In a multi-method study of attitudes towards cancer screening among medically underserved patients in a primary care setting, we found that attitudes (both positive and negative) were remarkably consistent across cancer screening types.

Development of a Multi-Behavioral mHealth App for Women Smokers

This article describes the development of the See Me Smoke-Free™ (SMSF) mobile health application, which uses guided imagery to support women in smoking cessation, eating a healthy diet, and increasing physical activity. Focus group discussions, with member checks, were conducted to refine the intervention content and app user interface. Data related to the context of app deployment were collected via user testing sessions and internal quality control testing, which identified and addressed functionality issues, content problems, and bugs. Interactive app features include playback of guided imagery audio files, notification pop-ups, award-sharing on social media, a tracking calendar, content resources, and direct call to the local tobacco quitline. Focus groups helped design the user interface and identified several themes for incorporation into app content, including positivity, the rewards of smoking cessation, and the integrated benefits of maintaining a healthy lifestyle. User testing improved app functionality and usability on many Android phone models. Changes to the app content and function were made iteratively by the development team as a result of focus group and user testing. Despite extensive internal and user testing, unanticipated data collection and reporting issues emerged during deployment due not only to the variety of Android software and hardware but also to individual phone settings and use.

Survivorship care plan outcomes for primary care physicians, cancer survivors, and systems: a scoping review

PurposeWith the focus on survivorship care-coordination between oncology and primary care providers (PCPs), there is a need to assess the research regarding the use of survivorship care plans (SCPs) and determine emerging research areas. We sought to find out how primary care physicians have been involved in the use of SCPs and determine SCP’s effectiveness in improving care for cancer survivors. In this scoping review, we aimed to identify gaps in the current research and reveal opportunities for further research.MethodsWe followed the methodology for scoping studies which consists of identifying the research question, locating relevant studies, selecting studies, charting the data, and collating, summarizing, and reporting the results.ResultsOut of 5375 original articles identified in the literature search, 25 met the inclusion/exclusion criteria. Eight articles examined PCP-only related outcomes, eight examined survivor-only related outcomes, eight examined mixed outcomes between both groups, and one examined system-based outcomes. Findings highlighted several areas where SCPs may provide benefits, including increased confidence among PCPs in managing the care of survivors and increased quality of life and well-being for survivors. This research also highlighted the need for careful consideration of SCP mode of delivery and content in order to maximize their utility to patients and providers.ConclusionsBased on the findings of this review, SCPs may benefit providers and health care systems, but the benefits to patients remain unclear. Further research on the potential benefits of SCPs to particular patient populations is warranted.Implications for Cancer SurvivorsSCPs appear to be beneficial to PCPs in improving overall quality of care. However, more work needs to be done to understand the direct impact on cancer survivors.