Pearl Anna McElfish

Barriers and Opportunities: A Community-Based Participatory Research Study of Health Beliefs Related to Diabetes in a US Marshallese Community

Purpose This study investigates the beliefs and perceptions related to type 2 diabetes that influence diabetes self-management behaviors for Marshallese in the United States. Using the health belief model as a theoretical framework, the researchers seek to better understand the underlying beliefs that motivate or impede diabetes self-management behaviors. Methods The community-based participatory research (CBPR) collaborative engaged in 14 months of preliminary fieldwork and conducted 2 tiers of focus groups for this project as part of the long-term commitment to reducing health inequalities in the Marshallese community. The CBPR team conducted an initial round of 2 exploratory focus groups (n = 15). Based on the knowledge gained, researchers held a second round of focus groups (n = 13) on health beliefs regarding diabetes. All participants were Marshallese, aged 18 years and older, and included men and women. Participants either had a diagnosis of diabetes or were a caretaker of someone with diabetes. Results The findings elucidate the structural and nonstructural barriers to successful diabetes self-management for Marshallese in the United States. Barriers include eating differently from the rest of the family, social stigma of diabetes, transportation, cost, lack of access to health care, and cultural and language barriers. Conclusions While there are significant barriers to improving diabetes self-management, there are also areas of opportunity, including family and peer reinforcement to encourage proper diabetes management behaviors and a growing community desire to lift the stigma of diabetes. The CBPR team offers recommendations to make diabetes management interventions more culturally appropriate and effective for the Marshallese population.

Effect of US health policies on health care access for Marshallese migrants.

The Republic of the Marshall Islands is a sovereign nation previously under the administrative control of the United States. Since 1986, the Compacts of Free Association (COFA) between the Republic of the Marshall Islands and the United States allows Marshall Islands citizens to freely enter, lawfully reside, and work in the United States, and provides the United States exclusive military control of the region. When the COFA was signed, COFA migrants were eligible for Medicaid and other safety net programs. However, these migrants were excluded from benefits as a consequence of the Personal Responsibility and Work Opportunity Reconciliation Act. Currently, COFA migrants have limited access to health care benefits in the United States, which perpetuates health inequalities.

Community-Driven Research Agenda to Reduce Health Disparities.

This paper describes how a new regional campus of an academic health center engaged in a community‐based participatory research (CBPR) process to set a community‐driven research agenda to address health disparities. The campus is situated among growing Marshallese and Hispanic populations that face significant health disparities. In 2013, with support from the Translational Research Institute, the University of Arkansas for Medical Sciences Northwest began building its research capacity in the region with the goal of developing a community‐driven research agenda for the campus. While many researchers engage in some form of community‐engaged research, using a CBPR process to set the research agenda for an entire campus is unique. Utilizing multiple levels of engagement, three research areas were chosen by the community: (1) chronic disease management and prevention; (2) obesity and physical activity; and (3) access to culturally appropriate healthcare. In only 18 months, the CBPR collaboration had dramatic results. Ten grants and five scholarly articles were collaboratively written and 25 community publications and presentations were disseminated. Nine research projects and health programs were initiated. In addition, many interprofessional educational and service learning objectives were aligned with the community‐driven agenda resulting in practical action to address the needs identified.

Family Model of Diabetes Education With a Pacific Islander Community

Purpose The purpose of the study was to use a community-based participatory research approach to pilot-test a family model of diabetes education conducted in participants’ homes with extended family members. Methods The pilot test included 6 families (27 participants) who took part in a family model of diabetes self-management education (DSME) using an intervention-driven pre- and posttest design with the aim of improving glycemic control as measured by A1C. Questionnaires and additional biometric data were also collected. Researchers systematically documented elements of feasibility using participant observations and research field reports. Results More than three-fourths (78%) of participants were retained in the study. Posttest results indicated a 5% reduction in A1C across all participants and a 7% reduction among those with type 2 diabetes. Feasibility of an in-home model with extended family members was documented, along with observations and recommendations for further DSME adaptations related to blood glucose monitoring, physical activity, nutrition, and medication adherence. Conclusions The information gained from this pilot helps to bridge the gap between knowledge of an evidence-based intervention and its actual implementation within a unique minority population with especially high rates of type 2 diabetes and significant health disparities. Building on the emerging literature of family models of DSME, this study shows that the family model delivered in the home had high acceptance and that the intervention was more accessible for this hard-to-reach population.

Health Beliefs of Marshallese Regarding Type 2 Diabetes.

OBJECTIVES The Marshallese population suffers from disproportionate rates of type 2 diabetes. This study identifies the underlying beliefs and perceptions that affect diabetes self-management behavior in the US Marshallese population living in Arkansas. METHODS The study employs focus groups with a semi-structured interview guide developed using a community-based participatory research (CBPR) approach and the Health Belief Model. Data were collected from 41 participants; bilingual community co-investigators provided translation as needed. RESULTS The results show high-perceived threat, with most participants describing diabetes as inevitable and a death sentence. Participants are generally unaware of the benefits of diabetes self-management behaviors, and the Marshallese population faces significant policy, environmental, and systems barriers to diabetes self-management. The primary cue to action is a diagnosis of diabetes, and there are varying levels of self-efficacy. CONCLUSIONS The research grounded in the Health Belief Model provides important contributions that can help advance diabetes self-management efforts within Pacific Islander communities.

Diabetes and Hypertension in Marshallese Adults: Results from Faith-Based Health Screenings

BackgroundThe Pacific Islander population in the USA is growing rapidly. However, research on Pacific Islanders in the USA is limited, or sometimes misleading due to aggregation with Asian Americans. This project seeks to add to the dearth of health literature by conducting a health assessment of Marshallese in northwest Arkansas.MethodsUsing a community-based participatory research approach, nine health screening events were conducted at local Marshallese churches. Participants completed the Behavioral Risk Factors Surveillance Survey core questionnaire and diabetes module if applicable. Biometric data, including Hemoglobin A1c, blood pressure, and body mass index, were gathered by an interprofessional team.ResultsFour hundred one participants completed health screenings. High proportions of diabetes, obesity, and hypertension were found. A high percentage of participants were uninsured, and multiple barriers to health care were found within the sample.DiscussionThis project represents one of the first broad health assessments of Pacific Islanders in the USA. Proportions of diabetes, hypertension, obesity, and uninsured found in the sample are much higher than national proportions.

Social Ecology and Diabetes Self-Management among Pacific Islanders in Arkansas

Chronic diseases disproportionately affect ethnic and racial minorities. Pacific Islanders, including the Marshallese, experience some of the highest documented rates of type 2 diabetes. Northwest Arkansas is home to the largest population of Marshallese outside of the Republic of the Marshall Islands, and many migrants are employed by the local poultry industry. This migrant population continues to increase because of climate change, limited health care and educational infrastructure in the Marshall Islands, and the ongoing health effects of US nuclear testing. The US nuclear weapons testing program had extensive social, economic, and ecological consequences for the Marshallese and many of the health disparities they face are related to the nuclear fallout. Beginning in 2013, researchers using a community-based participatory (CBPR) approach began working with the local Marshallese community to address diabetes through the development and implementation of culturally appropriate diabetes self-management education in a family setting. Preliminary research captured numerous and significant environmental barriers that constrain self-management behaviors. At the request of our CBPR stakeholders, researchers have documented the ecological barriers faced by the Marshallese living in Arkansas through a series of qualitative research projects. Using the Social Ecological Model as a framework, this research provides an analysis of Marshallese health that expands the traditional diabetes self-management perspective. Participants identified barriers at the organizational, community, and policy levels that constrain their efforts to achieve diabetes self-management. We offer practice and policy recommendations to address barriers at the community, organizational, and policy level.

Health research participants’ preferences for receiving research results

Background: Participants in health research studies typically express interest in receiving the results from the studies in which they participate. However, participants’ preferences and experiences related to receiving the results are not well understood. In general, the existing studies have had relatively small sample sizes and typically address specific and often sensitive issues within targeted populations. Methods: This study used an online survey to explore attitudes and experiences of registrants in ResearchMatch, a large database of past, present, and potential health research participants. Survey respondents provided information related to whether or not they received research results from studies in which they participated, the methods used to communicate the results, their satisfaction with the results, and when and how they would like to receive research results from future studies. In all, 70,699 ResearchMatch registrants were notified of the study’s topic. Of the 5207 registrants who requested full information about the study, 3381 respondents completed the survey. Results: Approximately 33% of respondents with previous health research participation reported receiving the results. Approximately half of respondents with previous research participation reported no opportunity to request the results. However, almost all respondents said researchers should always or sometimes offer the results to participants. Respondents expressed particular interest in the results related to their (or a loved one’s) health, as well as information about studies’ purposes and any medical advances based on the results. In general, respondents’ most preferred dissemination methods for the results were email and website postings. The least desirable dissemination methods for the results included Twitter, conference calls, and text messages. Across all the results, we compare the responses of respondents with and without previous research participation experience and those who have worked in research organizations versus those who have not. Compared to respondents who have previous participation experience, a greater proportion of respondents with no participation experience indicated that the results should always be shared with participants. Likewise, respondents with no participation experience placed higher importance on the receipt of each type of results’ information included in the survey. Conclusion: We present findings from a survey assessing attitudes and experiences of a broad sample of respondents that addresses gaps in knowledge related to participants’ preferences for receiving the results. The study’s findings highlight the potential for inconsistency between respondents’ expressed preferences to receive specific types of results via specific methods and researchers’ unwillingness or inability to provide them. We present specific recommendations to shift the approach of new studies to investigate participants’ preferences for receiving research results.

The National Children's Study: Recruitment Outcomes Using the Provider-Based Recruitment Approach.

OBJECTIVE: In 2009, the National Children’s Study (NCS) Vanguard Study tested the feasibility of household-based recruitment and participant enrollment using a birth-rate probability sample. In 2010, the NCS Program Office launched 3 additional recruitment approaches. We tested whether provider-based recruitment could improve recruitment outcomes compared with household-based recruitment. METHODS: The NCS aimed to recruit 18- to 49-year-old women who were pregnant or at risk for becoming pregnant who lived in designated geographic segments within primary sampling units, generally counties. Using provider-based recruitment, 10 study centers engaged providers to enroll eligible participants at their practice. Recruitment models used different levels of provider engagement (full, intermediate, information-only). RESULTS: The percentage of eligible women per county ranged from 1.5% to 57.3%. Across the centers, 3371 potential participants were approached for screening, 3459 (92%) were screened and 1479 were eligible (43%). Of those 1181 (80.0%) gave consent and 1008 (94%) were retained until delivery. Recruited participants were generally representative of the county population. CONCLUSIONS: Provider-based recruitment was successful in recruiting NCS participants. Challenges included time-intensity of engaging the clinical practices, differential willingness of providers to participate, and necessary reliance on providers for participant identification. The vast majority of practices cooperated to some degree. Recruitment from obstetric practices is an effective means of obtaining a representative sample.

A Social Ecological and Community-Engaged Perspective for Addressing Health Disparities Among Marshallese in Arkansas

Background: This article describes the case study of a community-based participatory research team that has used a social ecological approach to address significant health disparities in type 2 diabetes among Marshallese living in Arkansas. Methods: A case study approach is used to analyze the activities of the community-based participatory research partnership using a social ecological framework to describe how multiple factors across the social ecology are being addressed simultaneously. Results: In collaboration with the local Marshallese community and local organizations, the interprofessional team implemented interventions at each of the social ecological levels. Conclusion: Efforts to address health disparities should include interventions at multiple social ecological levels. Further, engaging diverse community partners contributes to success by leveraging the contextual and cultural knowledge, practices, and resources of all individuals and organizations involved. Finally, combining a social ecological perspective with a community-based participatory research approach contributes to sustainability of the interventions by engaging the broader community and ensuring the interventions reflect an understanding of and appreciation for the community’s culture.