Annals of Human Biology
ISSN: 0301-4460 (Print) 1464-5033 (Online) Journal homepage: http://www.tandfonline.com/loi/iahb20
Using CBPR to address health disparities with the Marshallese community in Arkansas Pearl A. McElfish, Ramey Moore, Melisa Laelan & Britni L. Ayers To cite this article: Pearl A. McElfish, Ramey Moore, Melisa Laelan & Britni L. Ayers (2018) Using CBPR to address health disparities with the Marshallese community in Arkansas, Annals of Human Biology, 45:3, 264-271, DOI: 10.1080/03014460.2018.1461927 To link to this article: https://doi.org/10.1080/03014460.2018.1461927
Published online: 07 Jun 2018.
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ANNALS OF HUMAN BIOLOGY 2018, VOL. 45, NO. 3, 264–271 https://doi.org/10.1080/03014460.2018.1461927
REVIEW ARTICLE
Using CBPR to address health disparities with the Marshallese community in Arkansas Pearl A. McElfisha, Ramey Mooreb, Melisa Laelanc and Britni L. Ayersa a
Office of Community Health and Research, University of Arkansas for Medical Sciences, Northwest Campus, Fayetteville, AR, USA; Department of Anthropology, University of Arkansas, Fayetteville, AR, USA; cArkansas Coalition of Marshallese, Springdale, AR, USA
b
ABSTRACT
ARTICLE HISTORY
Context: Arkansas currently has the largest Marshallese community in the continental US. The limited research available demonstrates that Marshallese have significant health disparities, with higher rates of obesity, diabetes, cardiovascular disease and infectious diseases than the US population. Objectives: The purpose of this paper is 2-fold: (1) to describe the formation and capacity building efforts of a community-based participatory research partnership with the Marshallese community in Arkansas and (2) to describe key findings and lessons learned from 5 years of collaborative research. Methods: A community-based participatory research approach was implemented to build alliances and improve health disparities in a Marshallese community. Results: Overarching lessons learned from collaboration with the Marshallese community include the: (1) Intensive involvement of Marshallese from multiple sectors of the community and in multiple roles in the research process, (2) Importance of interprofessional teams, (3) Importance of church, (4) Consideration of sex, (5) Importance of family and definition of family, (6) Talk Story and qualitative methods and the (7) Importance of cultural humility. Conclusions: This research helps fill important gaps in documenting the health disparities and interventions to address those disparities in the Marshallese community.
Received 31 October 2017 Revised 17 January 2018 Accepted 12 March 2018
Background The Pacific Islander population in the United States (US) is increasing, with significant and rapid growth in the Southern states of the US. Arkansas experienced a 252% growth in the Pacific Islanders population between 2000 and 2010. The vast majority of the Pacific Islanders in Arkansas are Marshallese, from the Republic of the Marshall Islands (RMI) (Hixson et al. 2012). Marshallese migrants began arriving in the late 1980s to work in the poultry industry in Arkansas and the population numbers have continually grown over the past 30 years. Arkansas currently has the largest Marshallese population in the continental US, with 12 000 Marshallese migrants living in Springdale, Arkansas, and the surrounding area. The RMI has a unique history with the US. The US military conducted nuclear testing in the Marshall Islands between 1946 and 1958, detonating 67 fission and thermonuclear devices, equivalent to 7200 Hiroshima-sized bombs (Barker 2012). As a result, areas of the Marshall Islands were contaminated, and the Marshallese lifestyle and diet shifted from farming and reliance on the ocean to a Western high-fat diet and more sedentary lifestyle. Some Marshallese had direct exposure to the nuclear fallout (Simon 1997) and many Marshallese believe that the contamination of Marshallese was intentional. After the nuclear fallout, the US conducted research on exposed Marshallese regarding the effects of nuclear radiation (Barker 2012). The research was conducted CONTACT Pearl A. McElfish
[email protected] 1125 N. College Ave, Fayetteville, AR 72701, USA ß 2018 Informa UK Limited, trading as Taylor & Francis Group
KEYWORDS
Community-based participatory research; Marshallese; Pacific Islander
without informed consent or information provided in the native language (Barker 2012). The Marshallese community exhibits distrust of research due to this historical trauma (Wallerstein 1999; Minkler 2004; Evans-Campbell 2008; SAMHSA 2015). The US controlled the Marshall Islands as part of the Trust Territory of the Pacific Islands from 1947–1986. Upon signing of the Compact of Free Association (COFA 2014) between the RMI and US in 1986, the RMI became a sovereign nation (108th United States Congress). The COFA allows Marshallese citizens to lawfully enter the US without a visa or permanent resident card, and provides the US military control over two million square miles of the pacific land and air space. The US also has a missile defence base in the RMI and occupies 11% of the land in the RMI. When the COFA was signed, Marshallese had access to federal funded health insurance; however, in 1996, COFA migrants living in the US were rendered ineligible for Medicaid when the Personal Responsibility and Work Opportunity Reconciliation Act (PRWORA) passed (Asian and Pacific Islander American Health Forum 2014). COFA migrants are not included in PRWORA’s category of qualified immigrants. This leaves many lowincome Marshallese with few insurance options. In addition, Marshallese living in Arkansas face a multitude of social ecological barriers to healthcare access, including low-income employment, low educational attainment and limited English
Office of Community Health and Research, University of Arkansas for Medical Sciences, Northwest Campus,
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proficiency (Williams and Hampton 2005; Choi 2008; Hallgren et al. 2015). Pacific Islanders, including Marshallese, are under-represented in health research (Srinivasan and Guillermo 2000; Park et al. 2009; Ro and Yee 2010; Roehr 2010). Much of the existing research aggregates data on Pacific Islanders and Asian Americans. The lack of research and research aggregation has masked health disparities, limited intervention development and negatively affected the resource allocation and policy development needed to address health disparities in these communities (Hong and Bayat 1999; Srinivasan and Guillermo 2000; United States Census Bureau 2007; Park et al. 2009; Ro and Yee 2010; Roehr 2010; Working Group of the Applied Research Center and National Council of Asian Pacific Americans 2013). The limited research available demonstrates that Marshallese, both in the RMI and in the US, have significant health disparities, with higher rates of obesity, diabetes, cardiovascular disease and infectious diseases than the US population (Brindle et al. 1988; Yamada et al. 2004; Minegishi et al. 2007; Bialek et al. 2010; Woodall et al. 2011; Ichiho et al. 2013). To address these disparities, a community-based participatory research (CBPR) partnership was developed. CBPR is a research approach seeking to involve community partners in the research process (Vaughn et al. 2017). CBPR has demonstrated effectiveness in building alliances to improve health when there are disparities resulting from systematic disadvantage, racism and historical trauma (Vaughn et al. 2017). In 2012, the University of Arkansas for Medical Sciences (UAMS) began a CBPR partnership with the Marshallese community. This partnership was developed because of UAMS’ mission to improve the health, healthcare and well-being of Arkansans and the lead author’s goal to address health disparities in Arkansas. The purpose of this paper is 2-fold: (1) to describe the formation and capacity building efforts of a CBPR partnership with the Marshallese community in Arkansas and (2) to describe key findings and lessons learned from 5 years of collaborative research.
CBPR methods Building research capacity The CBPR partnership initially included seven Marshallese community members who were identified as community leaders. This was then expanded to a full community advisory board (discussed below). The CBPR partnership included key capacity building activities: (1) conducting a needs assessment; (2) partnering with the Arkansas Coalition of Marshallese (ACOM); (3) working with Community Advisory Boards (CABs); (4) establishing a free clinic to serve the Marshallese; (5) recruiting and training a Marshallese research workforce, (6) implementing a community-engaged research training; and (7) cultural competency training.
Conducting a needs assessment The CBPR team, which included seven Marshallese community members, initially worked with the local Marshallese
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community to conduct mixed-methods needs assessments that surveyed 300 Marshallese on self-reported health status and research priorities. Then 10 focus groups were held with community stakeholders to discuss the information found in the surveys. After the initial needs assessment, UAMS has continued to conduct health screenings that include both biometric and survey assessments of health priorities in the Marshallese community (McElfish, Rowland, Long, et al. 2017). This approach allowed the Marshallese community to express the most pressing healthcare needs they wanted to address. The results revealed an overwhelming consensus that diabetes, cardiometabolic diseases, and access to culturally-appropriate healthcare were the most pressing and urgent health issues affecting the Marshallese community (McElfish, Kohler, et al. 2015; McElfish, Long, et al. 2018). Results have continued to be returned to the community for their use through: (1) biannual town hall meetings led by Marshallese staff; (2) infographics using plain language in English and Marshallese; and (3) monthly updates to community-based organisations and advisory board members.
Partnering with Arkansas Coalition of Marshallese (ACOM) UAMS partnered with ACOM as an important component to engaging Marshallese community members. ACOM is the only non-profit in Arkansas focused on supporting the Marshallese community whose board consists of local Marshallese community members. ACOM’s mission is to improve Marshallese and other Pacific Islanders’ quality-of-life through community projects, community partnerships, and advocacy initiatives that are responsive to the needs and concerns of Pacific Islanders in Arkansas and surrounding states. ACOM works to empower Marshallese and Pacific Islanders by establishing and cultivating collaborative relationships with community organisations and facilitating community access to resources, information, and broad advocacy at the state, regional, and national level. ACOM has led initiatives and programmes to build awareness about the needs of Marshallese and Pacific Islanders and improve the social, health, economic, and political conditions in these communities. ACOM contributes to CBPR projects’ success by leveraging cultural expertise and community relationships to help ensure projects meet recruitment, retention, and community dissemination goals. Initially, UAMS was the only funder of ACOM activities; however, over the past 4 years, ACOM has had substantial growth and has used the data generated from the research to secure other funding and UAMS currently provides less than half of ACOM’s budget.
Engaging Community Advisory Boards (CABs) The CBPR team works closely with a CAB comprised of Marshallese community members, as well as a second CAB composed of faith-based leaders. Members of the broad CAB were invited from diverse professional backgrounds and include members from banking, school, law enforcement and the local Marshallese government. For the faith-based leaders
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CAB, all faith-based leaders in the community are invited. The two CABs bring research ideas and requests to the research team and provide input during the research process. These two CABs are involved in drafting and revising study materials for recruitment, retention and dissemination. They review and provide input on consent forms, interview guides and survey measures. Overall, the CABs contribute to the success of all CBPR projects by intensely engaging Marshallese stakeholders to ensure the research is culturally appropriate.
Establishing North street clinic Based on the disparities identified in the needs assessment and the lack of options for care for uninsured Marshallese, UAMS established an interprofessional clinic focused on meeting the needs of uninsured Marshallese who have cardiometabolic diseases such as diabetes. The clinic is operated by interprofessional faculty, students and a team of Marshallese community health workers. Each year the clinic serves hundreds of uninsured Marshallese without charge. Sheldon Riklon, MD, one of the only two Marshallese physicians trained in the US, was recruited to help oversee the operation of the clinic. Dr Riklon also serves at the federally qualified health centre which serves most of the Marshallese in the area.
Recruiting and training a Marshallese research workforce In addition to engaging ACOM and the CABs, it was imperative to have Marshallese community members working at UAMS and leading research efforts within the university setting. More than half of the staff dedicated to the research are Marshallese. Marshallese research team members serve at all levels of the research from faculty researchers, project managers (managing staff), research coordinators and community health workers. In addition, certified community health worker training has been provided to 31 Marshallese and certified interpreter training has been provided to 13 Marshallese who now work across the university and other healthcare organisations. This has allowed critical input on every decisions made in the research process on a day-today basis.
Community-engaged research training (CERT) In September 2015, UAMS designed a community-engaged research training (CERT) programme to meet the needs identified by both community members and academic researchers. The goal of the CERT programme was to build the capacity of both academic researchers and community researchers to conduct CBPR that would address the health disparities identified by the Marshallese community. The lead author met with community stakeholders who had been conducting research with UAMS and asked them to describe the areas of training they wanted to receive and what areas they felt researchers needed to better understand to conduct effective research with the community. Community
stakeholders requested assistance in understanding: (1) the definition of research and how it helps the community; (2) how the community can be true partners in the research; and (3) resource sharing and budget. Furthermore, community stakeholders requested that academic researchers needed assistance with: (1) respecting community knowledge; (2) partnering with the community; (3) respecting community partners; and (4) Pacific Islander history and culture. The CERT programme included both didactic training and experiential mentored research components delivered over 2 years. The CERT programme recognised community stakeholders and academic researchers as equals who both had knowledge and wisdom to contribute and is continuing to conduct research within the community. In 2017, the programme graduated 11 community stakeholders and 11 academic researchers. Additional training is being planned.
Cultural competency training In addition to building the capacity of the CBPR researchers, it was imperative to improve the capacity of current and future healthcare providers to better engage with the Marshallese community. To achieve this, two distinct but related programmes were developed. First, a cultural competency programme that focused on providing culturally appropriate healthcare to Marshallese was co-developed and co-delivered by a nurse health educator and a Marshallese community member. The training was provided in multiple on-site training sessions to more than 1500 healthcare providers and 25 organisations in the region. The training continues to be provided to hundreds of healthcare providers each year through an online learning system (McElfish, Long, et al. 2017). The second programme focused on building the capacity of future healthcare professionals through a mandatory inter-professional education programme that requires students at UAMS from the disciplines of Medicine, Nursing, Pharmacy and Physical Therapy to participate in cultural competency education, serve in the North Street Clinic (discussed above) and serve in Marshallese-focused outreach and research activities through their last 2 years of clinical education (McElfish et al. 2018). Through these programmes, the CBPR team seeks to change the environment in which the Marshallese community receives care.
Research conducted and research results Based on the priorities set by the community, an inter-professional CBPR team has conducted research and communitybased programmes in the following areas: (1) Diabetes and cardiometabolic research; (2) Maternal and child health; and (3) Culturally aware health providers. From these research projects the CBPR team has published 20 articles together (Hallgren et al. 2015; McElfish, Bridges, et al. 2015; McElfish, Kohler, et al. 2015; McElfish, Hallgren, et al. 2015, 2016; McElfish 2016; McElfish, Moore, et al. 2016; McElfish, Post, et al. 2016; McElfish, Purvis, et al. 2016; Scott et al. 2016; Ayers et al. 2017; Felix et al. 2017; McElfish, Goulden, et al. 2017; McElfish, Long, et al. 2017; McElfish, Moore, et al. 2018; McElfish, Narcisse, et al. 2017; McElfish, Rowland, Long, et al.
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2017; Purvis et al. 2017; Yeary, Aitaoto et al. 2017; Yeary, Long, et al. 2017). Major findings from these research projects are presented in Table 1. In addition, there have been lessons learned that cut across all projects.
Lessons learned Through multiple research projects with the Marshallese community, the CBPR team has identified overarching lessons learned that are important to conducting research with the Marshallese community. These lessons include the: (1) Intensive involvement of Marshallese from multiple sectors of the community and in multiple roles in the research process; (2) Importance of inter-professional teams; (3) Importance of church; (4) Consideration of sex; (5) Importance of family and definition of family; (6) Talk Story and qualitative methods; and (7) Importance of cultural humility. Intensive involvement of Marshallese from multiple sectors of the community and in multiple roles in the research process While a CBPR approach often involves a community-based organisation and/or a CAB, the success of the programmes described in this article are due to the use of a multipronged approach which includes partnering with ACOM as a community-based organisation, engaging two CABs (one faith-based and one with community leaders) and hiring and developing Marshallese staff who work for UAMS at multiple levels of the research enterprise. Engaging Marshallese community members within and outside the university has been key to the success of the research.
Importance of inter-professional teams Because CBPR is driven by the needs of the community and the areas that the community wants to address, it is imperative to have the commitment of a large inter-professional team that can help conduct research in the areas that the community prioritises. The inter-professional team described in this article includes researchers in the areas of endocrinology, genetics, nutrition, health communications, policy, treatment adherence, and maternal child health. Each profession, medicine, nursing, pharmacy, public health and other, is represented on the CBPR team. As the community identifies items that they want to address, additional members are recruited, or the Marshallese community is connected with researchers outside the CBPR team.
Importance of church The Marshall Islands had several missionary groups that arrived in the mid-1850s (Hezel 2001; Barker 2012). Today, the vast majority of Marshallese are Christian. Churches are an important part of the Marshallese culture and understanding the role of church is important for engaging Marshallese in research. Within the Marshallese community, churches represent far more than religious beliefs. Churches
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are often organised around atoll and clan structures. Entire families and clans attend together at least once a week and often several times per week. Church leaders have a hierarchal leadership role in the community, similar to governmental leaders. Pastors and madam pastors have particularly high honour and respect within the community. Engaging pastors, madam pastors and other church leaders is important to successfully engage the Marshallese community in research. Furthermore, to reduce contamination, churches are often the best unit of randomisation for randomised controlled trials. It is also important to open and close all meetings or meals with Marshallese stakeholders with prayer. The most senior level faith leader is often asked to pray.
Consideration of sex It is often culturally inappropriate for many research activities to take place with both male and female community members together. Therefore, it is preferred or often necessary to separate participants based on sex for research activities including biometric measurements or the discussion of any behaviours or beliefs affiliated with the reproductive system. Furthermore, it is important for the data collectors to be the same sex as the participant whenever possible.
Importance of family and definition of family Marshallese have a collectivist culture that is based on valuing the needs of the family or community over the individual. It is also important to understand that the definition of family extends beyond the immediate family definition often used in the US. Within the Marshallese community, the definition of family often includes multiple extended members of a person’s clan and/or non-biologically affiliated community members. The Marshallese language also reflects their cultural views of family. The Marshallese word for mother and aunts on the mother’s side are the same word. The word for maternal cousin and sibling is also the same word. Adoption within extended family units in common. Multiple, extended family members live in a household and the members of a household are often fluid. Decisions are often made as a family unit rather than individually. Families eat together and eating or behaving differently from the rest of the family is discouraged. Aunts and older females in the family often join with mothers in making any decisions about pregnancy and child rearing. Consideration of family is extremely important when conducting research or implementing behavioural interventions. Respect for and inclusion of extended family members can help make research and interventions more culturally appropriate and effective.
Talk story and qualitative methods Marshallese follow an oral tradition that values face-to-face discussions from which they can gauge a person’s trustworthiness, intent and sincerity as knowledge, information and wisdom are being exchanged. This cultural practice of sharing information and experiences allows for open
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Table 1. Major areas of research. Study Diabetes and cardiometabolic research Cardiometabolic status through Church Health Screenings (Felix et al. 2017; McElfish P, Rowland B, Long, et al. 2017) Nine health screenings with 401 participants. Biometric data, including Hemoglobin A1c, blood pressure, and body mass index, were collected. Survey data collected using BRFSS
Willingness to participate in genetics research (McElfish, Narcisse, et al. 2017). 148 participants were recruited for a study examining genetic variants to better understand diabetes.
Qualitative research to understand health beliefs about type 2 diabetes and DSME (Hallgren et al. 2015; McElfish, Hallgren, et al. 2016; McElfish, Post, et al. 2016) 15 participants in two focus groups.
Comparative effectiveness randomised control trial of Family Model DSME (McElfish, Goulden, et al. 2017; Yeary, Aitaoto et al. 2017; Yeary, Long, et al. 2017) 240 participants were recruited for a randomised control trial of Family Model DSME.
Maternal and child health Infant feeding beliefs (Scott et al. 2016) 31 participants in five focus groups regarding what are the perceptions, beliefs, and experiences affecting exclusive breastfeeding. Maternal health beliefs (Ayers et al. 2018). 43 participants in three focus groups regarding what are the beliefs, perceptions and experience with maternal child health care.
Maternal healthcare providers’ beliefs (Ayers et al. 2017). 20 participants in one focus group and eight individual interviews regarding maternal healthcare providers’ perceptions and experiences of barriers in providing care to Marshallese women and providers’ perceived barriers of access to care.
Findings 29.0% had normoglycemic levels, 32.6% had levels indicative of pre-diabetes and 38.4% had levels indicative of diabetes. 10.4% had normal/healthy BMIs, 28.0% were overweight and 61.7% were obese. 19.7% of participants had normotensive blood pressure, 39.1% had blood pressure measures in the pre-hypertension range and 41.2% had measures indicating hypertension. Approximately one in five participants (19.2%) were found to have measures indicating the presence of both diabetes and hypertension. 46.4% were uninsured Having type 2 diabetes was not statistically associated with levels of physical activity. Having time to be physically active was significantly associated with being physically active. Being obese, having less than a high school education, not having time and not having a comfortable place to exercise were significantly associated with never being physically active 95.5% recruitment rate Among the 148 participants, 143 (96%) agreed to be contacted for future studies 142 (95.9%) agreed to have their samples used for future IRB-approved studies 144 (97.3%) gave permission for the researchers to link information from this study to other studies in which they had participated. Qualitative results conveyed that the majority of participants were willing to contribute to the health of their community and to understand the genetic influence related to diabetes. The research team is currently processing the samples Diabetes is understood to be dangerous for a person’s health. Many see diabetes as inevitable. Generally unaware of the benefits of diabetes self-management behaviours. Meals are eaten together. Diabetes management must include extended family members. Marshallese face significant policy, environmental and systems barriers to diabetes self-management DSME curriculum adapted for Marshallese culture and for family implementation using a CBPR approach. 90% retention rate. Culturally-adapted Family DSME intervention arm produced statistically and clinically significant reduction in HbA1c (1.19 units) at post-intervention Utilisation of CBPR increases potential for the intervention’s success and sustainability Marshallese mothers viewed breast milk as superior to formula. Primary barriers to exclusive breastfeeding included: verbal and non-verbal public shaming, perceived low milk production and quality, maternal employment, lack of female familial support and institutional influences (e.g. hospital, WIC) Pre-natal barriers Structural barriers identified included negotiating health insurance, transportation and language barriers. Socio-cultural barriers included the lack of understanding of the importance of early and consistent pre-natal care, feelings of shame and embarrassment, perceived discrimination from pre-natal care providers and an overall fear of the process. Maternal beliefs Limited use of contraceptives as a family planning method. Attempt to integrate both Western and traditional methods for pre-natal care. Participants used positive discourse to describe birthing in the Marshall Islands but negative discourse for birthing in the US. Participants described desiring to utilise traditional methods of care throughout their pre-natal, birthing and post-partum experience Structural barriers included transportation, lack of health insurance, communication and language Socio-cultural barriers that emerged described an incongruence between traditional and Western medical models of care There was an overall discord between the collectivist cultural identity of Marshallese families and the individualistic maternal healthcare system that merits further research (continued)
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Table 1. Continued Study Child-feeding beliefs (Johnson et al. 2017) 27 participants participated in four focus groups to explore child-feeding beliefs, perceptions and practices with Marshallese mothers and caregivers.
Interpretive Policy Analysis of Affordable Care Act (McElfish, Purvis, et al. 2016) 51 participants in five focus groups and three individual interviews regarding their interpretation of the Affordable Care Act and related policies on their health
Culturally aware healthcare providers Improving culturally appropriate care (McElfish, Long, et al. 2017) More than 1250 units of training focused on Marshallese health beliefs and culture were delivered at 25 organisations Integrating interprofessional education (McElfish, Long, et al. 2017) Medicine, nursing, pharmacy and physical therapy students participated in a formal training programme focused on improving cultural competency.
discussion and communication and is often referred to as talk story in Pacific cultures. When conducting research in partnership with the Marshallese, it is important to give significant time for informal conversation. The tradition of talk story also allows for the effective use of qualitative methods. Qualitative methods can be used with the Marshallese community because qualitative research mirrors the cultural traditions of talk story and, in doing so, embraces the perspectives and traditions of the participants. Qualitative methods embrace the social-cultural context in which participants live and allows knowledge to be shared in a culturally appropriate way.
Importance of cultural humility While the team is committed to conducting CBPR and honouring the Marshallese community’s cultural protocols, many mistakes are made despite the team’s best efforts. Marshallese community cultural protocols and university policies and procedures are often at odds and successful implementation of the research requires significant flexibility from both the community and the university. CBPR with the Marshallese community is a continuous learning process that requires working in unknown and uncertain environments. It requires humility and courage on the part of both community members and university researchers. It is imperative to have the tenacity to continually make mistakes, ask for
Findings Breastfeeding was discussed as a preventative measure against illness and a means of providing comfort. Supplementation was used out of necessity and convenience Introduction of complementary foods was dependent on dentition and infants interest between 10–11 months Mothers offer fruits and vegetables, whereas caregivers offer rice, fish, soup or breadfruit Staple diets of both mothers and caregivers included fruits, vegetables and rice Marshallese view the ACA and their lack of coverage as part of the broader relationship between the RMI and the US. The Marshallese state that they have honoured the COFA relationship and they believe the US is failing to meet its obligation of care and support outlined in the COFA While many participants were quite knowledgeable about the ACA, others reported considerable confusion and lack of understanding. Participants explained they had reduced understanding and frustration because of the lack of follow-up after applying for the ACA There was a lack of understanding about insurance premiums, co-pays, enrolment periods, tax penalties and who accepts their insurance. Despite their experiences, participants were generally supportive of the ACA, but felt that the system needed improvement Participants reported high levels of change in: Knowledge (91.2%) Competence (86.6%) Performance (87.2%) Organisations reported making policy and environmental changes The cultural competence component of the programme produced statistically significant changes from pre-programme (48.7) to post-programme (59.87) in student participants' knowledge, attitudes and behaviours towards working with other cultures than their own Students’ qualitative findings demonstrated a change in students’ knowledge, attitudes and behaviours towards working with under-served populations
forgiveness and go back to the important work of collaboratively addressing health disparities.
Future research Based on prior research and the lessons learned, the CBPR team is preparing for expansion of its research in the areas of diabetes and maternal health and preparing to explore new areas including cancer, mental health and hypertension. Within the diabetes research, the CBPR team is launching a comparative effectiveness study of two diabetes prevention programmes. The study is a randomised controlled trial that will take place in Marshallese churches in Arkansas, Kansas, Oklahoma, and Missouri. The study was designed as a result of a direct request from Marshallese pastors and will be the CBPR team’s first study implemented outside Arkansas. The CBPR team is also building upon their exploratory work in maternal and child health and is collecting additional mixed method data with the plan to develop interventions to support maternal health and early childhood nutrition. In response to the community’s request for research in the area of cancer and mental health, the CBPR team is expanding relationships with researchers in these areas. Furthermore, the research on diabetes has revealed significant levels of hypertension and stroke risk and research focused on effectively reducing hypertension and preventing strokes is being planned.
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Conclusion The Marshallese have experienced significant trauma through invasion by Japan and the US and then subsequent US nuclear testing on their land. In the 1980s, Marshallese began migrating to Arkansas, and Arkansas now has the largest community of Marshallese in the continental US. While there are limited data on Marshallese residing in the US, the data available shows striking health disparities. There are also a lack of culturally-appropriate interventions for Marshallese, creating an urgent need for research. Over the past 5 years, the CBPR team in northwest Arkansas has demonstrated success in engaging the Marshallese community of Arkansas in research using a CBPR approach. This research helps fill important gaps in documenting the health disparities and interventions to address those disparities in the Marshallese community. The aim of this paper is to describe the formation and capacity-building efforts and key findings and lessons learned from 5 years of a CBPR partnership with the Marshallese community in Arkansas. The organising of this paper necessitates a linear outline; however, the process was and continues to be circular. The results of this paper can serve to inform other CBPR teams working with the Marshallese or other Pacific Islander communities.
Acknowledgments This research was made possible by the CBPR partnership with local Marshallese stakeholders, the Marshallese Consulate General, Marshallese faith-based leaders, the Arkansas Coalition of Marshallese, the Gaps in Services to Marshallese Task Force and Northwest Arkansas Workers’ Justice Center. CBPR partnership support was provide by the UAMS Translational Research Institute grant no. UL1TR000039, which is funded through the National Institutes of Health National Center for Research Resources and National Center for Advancing Translational Sciences. Support for projects discussed within this article were provided by the Centers for Disease Control and Prevention grant no. 1U58DP005545; the Patient-Centered Outcomes Research Institute (PCORI) AD-1310–07159; the UAMS College of Medicine Intramural Sturgis Grant for Diabetes Research provided by the Sturgis Foundation; and the Wal-Mart Foundation. The content of this paper is solely the responsibility of the authors and does not necessarily represent the official views of the funders.
Disclosure statement No potential conflict of interest was reported by the authors.
References Asian and Pacific Islander American Health Forum. 2014. Medicaid restoration for compact of free association migrants. Available from: http:// www.apiahf.org/policy-and-advocacy/policy-priorities/health-care-access/ medicaid-restoration-compact-free-associati Ayers BL, Hawley NL, Purvis RS, Moore SJ, McElfish PA. 2017. Providers’ perspectives of barriers to maternal health care among Marshallese women. Women and Birth. [Epub ahead of print]. doi: 10.1016/ j.wombi.2017.10.006 Ayers B, Purvis R, Bing W, Rubon-Chutaro J, Hawley N, Delafield R, Adams I, McElfish P. 2018. Structural and socio-cultural barriers to prenatal care in a US Marshallese community. Maternal Child Health. Forthcoming.
Barker H. 2012. Bravo for the Marshallese: regaining control in a postnuclear, post-colonial world. Belmont (CA): Cengage Learning. Bialek S, Helgenberger L, Fischer G, Bower W, Konelios M, Chaine J, Armstrong G, et al. 2010. Impact of routine hepatitis b immunization on the prevalence of chronic hepatitis b virus infection in the Marshall islands and the federated states of Micronesia. Pediatr Infect Dis J. 29:18–22. Brindle R, Eglin R, Parsons A, Hill A, Selkon J. 1988. HTLV-1, HIV-1, hepatitis b and hepatitis delta in the pacific and South-East Asia: a serological survey. Epidemiol Infect. 100:153–156. Choi JY. 2008. Seeking health care: Marshallese migrants in Hawai'i. Ethn Health. 13:73–92. Compact of Free Association (COFA). 2014. Compact of free association amendments act of 2003. Washington (DC): US Government Printing Office; http://www.gpo.gov/fdsys/pkg/PLAW-108publ188/html/PLAW-108 publ188.htm Evans-Campbell T. 2008. Historical trauma in American Indian/native Alaska communities: a multilevel framework for exploring impacts on individuals, families, and communities. J Interpers Violence. 23:316–338. Felix H, Li X, Rowland B, Long C, Yeary K, McElfish P. 2017. Physical activity and diabetes-related health beliefs of Marshallese adults. Am J Health Behav. 41:553–560. Hallgren E, McElfish P, Rubon-Chutaro J. 2015. Barriers and opportunities: a community-based participatory research study of health beliefs related to diabetes in a US Marshallese community. Diabetes Educ. 41:86–94. Hezel F. 2001. The new shape of old island cultures: a half century of social change in Micronesia. Honolulu: University of Hawaii. Hixson L, Hepler B, Kim M. 2012. The native Hawaiian and other Pacific islander population 2010. Washington (DC): United States Census Bureau. Hong B, Bayat N. 1999. National Asian American and Pacific islander cardiovascular health action plan: eliminating racial and ethnic disparities in cardiovascular health: improving the cardiovascular health of Asian American and pacific islander populations in the United States. San Francisco (CA): Asian Pacific Islander American Health Forum. Ichiho HM, deBrum I, Kedi S, Langidrik J, Aitaoto N. 2013. An assessment of non-communicable diseases, diabetes, and related risk factors in the republic of the Marshall islands, Majuro Atoll: a systems perspective. Hawaii J Med Public Health. 72(5 Suppl 1):87–97. Johnson K, Shreve M, Scott A, Ayers B, Seaton V, McElfish P. 2017. Marshallese beliefs, perceptions, and practices related to child-feeding. Submitted: Minority Health. McElfish P. 2016. Marshallese COFA migrants in Arkansas. J Ark Med Soc. 112(13):259–262. McElfish P, Bridges M, Hudson J, Purvis R, Bursac Z, Kohler P, Goulden P. 2015. Family model of diabetes education with a Pacific Islander community. Diabetes Educ 41:706–715. McElfish PA, Goulden PA, Bursac Z, Hudson J, Purvis RS, Kim Yeary KH, Aitaoto N, Kohler PO. 2017. Engagement practices that join scientific methods with community wisdom: designing a patient-centered, randomized control trial with a Pacific Islander community. Nurs Inq. 24(2):1-11. McElfish P, Hallgren E, Henry L, Ritok M, Rubon-Chutaro J, Kohler P. 2016. Health beliefs of Marshallese regarding type 2 diabetes. Am J Health Behav. 40:248–257. McElfish P, Hallgren E, Yamada S. 2015. Effect of us health policies on health care access for Marshallese migrants. Am J Public Health. 105:637–643. McElfish P, Kohler P, Smith C, Warmack S, Buron B, Hudson J, Bridges M, et al. 2015. Community-driven research agenda to reduce health disparities. Clin Transl Sci. 8:690–695. McElfish PA, Long CR, Rowland B, Moore S, Wilmoth R, Ayers B. 2017. Improving culturally appropriate care using a community-based participatory research approach: Evaluation of a multicomponent cultural competency training program, Arkansas, 2015–2016. Prev Chronic Dis. 14:E62. McElfish PA, Long CR, Stephens RM, Spencer N, Rowland B, Spencer HJ, Stewart MK. 2018. Assessing community health priorities and
ANNALS OF HUMAN BIOLOGY
perceptions about health research: a foundation for a communityengaged research program. J High Educ Outreach Engagem. 22(1):107–128. McElfish P, Moore R, Buron B, Hudson J, Long C, Purvis R, Schulz T, Rowland B, Warmack T. 2018. Integrating interprofessional education and cultural competency training to address health disparities. Teach Learn Med. 30:213–222. McElfish P, Moore R, Woodring D, Purvis R, Maskarinec G, Bing W, Hudson J, et al. 2016. Social ecology and diabetes self-management among Pacific islanders in Arkansas. J Fam Med Dis Prev. 2:026. McElfish PA, Narcisse M, Long CR, Ayers B, Hawley NL, Aitaoto N, Ricklon S, et al. 2017. Leveraging community-based participatory research capacity to recruit Pacific Islanders in Arkansas into a genetics study. J Commun Genet. 8(4):283–291. McElfish P, Post J, Rowland B. 2016. A social ecological and communityengaged perspective for addressing health disparities among Marshallese in Arkansas. Int J Nurs Clin Pract. 3:1–6. McElfish P, Purvis R, Maskarinec G, Bing W, Jacob C, Ritok M, RubonChutaro J, et al. 2016. Interpretive policy analysis: Marshallese cofa migrants and the affordable care act. Int J Equity Health. 15:91. McElfish P, Rowland B, Long C, Hudson J, Piel M, Buron B, Riklon S, Bing W, Warmack T. 2017. Diabetes and hypertension in Marshallese adults: results from faith-based health screenings. J Racial Ethnic Health Disparities. 4:1042–1050. Minegishi M, Fujimori K, Nakajima N, Watanabe M, Doi H, Otomo H, Ouchi N, Satomi S. 2007. Diabetes mellitus and obesity among participants receiving screening for cancer in the republic of the marshall islands. J Int Health. 22:133–141. Minkler M. 2004. Ethical challenges for the “outside” researcher in community-based participatory research. Health Educ Behav. 31:684–697. Park CB, Braun KL, Horiuchi BY, Tottori C, Onaka AT. 2009. Longevity disparities in multiethnic Hawaii: an analysis of 2000 life tables. Public Health Rep. 124:579–584. Purvis R, Bing W, Jacob C, Lang S, Mamis S, Ritok M, Rubon-Chutaro J, McElfish P. 2017. Community health warriors: Marshallese community health workers’ perceptions and experiences with CBPR and community engagement. Prog Community Health Partnersh. 11(3):315–320. Ro M, Yee A. 2010. Out of the shadows: Asian Americans, native Hawaiians, and Pacific Islanders. Am J Public Health. 100:776–778. Roehr B. 2010. Asians and pacific islanders in US need greater prominence in research. BMJ. 340:c2495. SAMHSA. 2015. GAINS Center for Behavioral Health and Justice Transformation. Fact sheet: Historical trauma. Substance Abuse and
271
Mental Health Services Administration. http://gainscenter.samhsa.gov/ cms-assets/documents/93078-842830.historical-trauma.pdf Scott A, Shreve M, Ayers B, McElfish PA. 2016. Breast-feeding perceptions, beliefs and experiences of Marshallese migrants: an exploratory study. Public Health Nutr. [2016 May; 1–10.]. PubMed PMID: 27230629. Simon SL. 1997. A brief history of people and events related to atomic weapons testing in the Marshall Islands. Health Phys. 73:5–20. Srinivasan S, Guillermo T. 2000. Toward improved health: disaggregating Asian American and native Hawaiian/Pacific Islander data. Am J Public Health. 90:1731–1734. United States Census Bureau. 2007. The American community: Pacific Islanders: 2004. Washington, DC: United States Census Bureau. Vaughn LM, Jacquez F, Lindquist-Grantz R, Parsons A, Melink K. 2017. Immigrants as research partners: a review of immigrants in community-based participatory research (CBPR). J Immigr Minor Health. 19:1457–1468. Wallerstein N. 1999. Power between evaluator and community: research relationships within New Mexico’s healthier communities. Soc Sci Med. 49:39–53. Williams D, Hampton A. 2005. Barriers to health services perceived by Marshallese immigrants. J Immigr Health. 7:317–326. Woodall P, Scollard D, Rajan L. 2011. Hansen disease among Micronesian and Marshallese persons living in the United States. Emerging Infectious Diseases 17:1202–1208. Working Group of the Applied Research Center and National Council of Asian Pacific Americans. 2013. Best practices: researching Asian Americans, native Hawaiians and Pacific Islanders. New York, NY: Applied Research Center and National Council of Asian Pacific Americans. Yamada S, Dodd A, Soe T, Chen T, Bauman K. 2004. Diabetes mellitus prevalence in out-patient Marshallese adults on Ebeye Island, Republic of the Marshall Islands. Hawaii Med J. 63:45–51. Yeary K, Aitaoto N, Sparks K, Ritok-Lakien M, Hudson J, Goulden P, Bing W, Riklon S, Rubon-Chutaro J, McElfish P. 2017. Cultural adaptation of diabetes self-management education for marshallese residing in the US: lessons learned in curriculum development. Progr Community Health Partnersh. 11(3):253–261. Yeary KHK, Long CR, Bursac Z, McElfish PA. 2017. Design of a randomized, controlled, comparative effectiveness trial testing a family model of diabetes self-management education (DSME) vs. Standard DSME for United States Marshallese Islanders. Contemp Clin Trials Commun. 6:97–104.
