The Science of Diabetes Self-Management and Care2023, Vol. 49(4) 281 –290© The Author(s) 2023Article reuse guidelines:sagepub.com/journals-permissionsDOI: 10.1177/26350106231178838journals.sagepub.com/home/tde
AbstractPurpose: The purpose of this study was to better understand the factors that influence the ability of batey adults to self-manage their type 2 diabetes mellitus (T2DM).
Methods: A qualitative descriptive approach was used to conduct in-depth, individual interviews in Spanish. Participants (n = 12) were health care workers and members of a nongovernmental organization (NGO) that provides direct diabetes care to batey residents via free, pop-up, mobile medical clinics. Conventional content analysis was used to identify categories and common themes in the data.
Results: Participants described daily existence in the bateyes as a constant “scarcity of resources.” Additionally, four themes and one subtheme emerged that participants felt impacted diabetes health outcomes and the ability of NGO health care workers to provide diabetes care.
Conclusions: NGO members, while committed to serve and improve health outcomes for the batey population, often felt overwhelmed. Findings from this qualitative descriptive study may be used to inform novel interventions, which are needed, to enhance the diabetes outcomes of the batey residents who are living with T2DM. In addition, strategies are needed to build diabetes care infrastructure in the batey community.
Type 2 diabetes mellitus (T2DM) is a rapidly growing chronic disease1: 79% of adults living with diabetes reside in low- and middle-income countries.2 The number of adults with T2DM is expected to rise and reach 615 million by 2040.3 As the prevalence of T2DM increases, the challenge of managing this global disease will also increase.2
The Dominican Republic is a middle-income country that shares its border with Haiti and is home to many Haitian migrants. Haiti is one of the Western Hemisphere’s most impoverished countries.4 Often, Haiti’s population opts to migrate to other countries, including the Dominican Republic, seeking a better life. Poverty is the most critical social determinant forcing Haitians to emigrate to the Dominican Republic to obtain work in the sugarcane industry.5
Haitian migrants in the Dominican Republic often settle in sugarcane villages, called bateyes.6 The bateyes are small communities that are controlled by the sugarcane industry.7 There are an estimated 400 bateyes in the Dominican Republic.6 Housing is provided to the sugarcane company employees who work to harvest sugarcane.8 Many bateyes are located in rural, isolated areas, and a high percentage of people living in the bateyes experience extreme poverty.6,9 Batey homes typically consist of 1 dirt-floor room that lacks electricity, sanitation, or running water.9 Water is gathered on foot with buckets via a single spicket, and clothes are washed by hand in a barrel. There is usually one small store in the batey, which is run by the sugarcane company. The stores typically sell canned goods and dry goods, such as rice, together with cigarettes and alcohol. There is little access to fresh fruits and vegetables, unless grown in the batey. A typical batey resident has little means of transportation other than walking or by unreliable bus service.8 Moreover, batey residents must travel long distances to reach health care facilities. There is usually one main dirt road to access the bateyes, and when it rains, roads can become muddy and impassable. Hence, access to health care for the batey population is minimal and rudimentary.9
Preliminary work was conducted by the authors in 2019 and consisted of a community needs assessment and individual interviews to explore knowledge of the pathophysiology, diet, and treatment of T2DM among Haitian migrants living with the disease. The authors interviewed 10 adults living with T2DM in 2 bateyes, Cacata and Magdalena, located in the southeastern region of the Dominican Republic. A nongovernmental organization (NGO) had been providing diabetes care to these two bateyes since 2017. Results of the needs assessment and interviews indicated that overall, participants appeared to have little knowledge about diabetes. The assessment showed that most adults with T2DM knew they “were sick” but could not describe the diabetes pathophysiology, disease process, and treatment. For example, participants were unable to distinguish signs and symptoms of hypoversus hyperglycemia. The assessment indicated that participants had little in the way of skills to self-manage their T2DM. The authors concluded that there was a need to better understand the factors that impact T2DM self-care management for the batey community.
The current qualitative descriptive study was then undertaken to identify and better understand factors that influence the ability of batey adults to self-manage their T2DM. The socio-ecological model10 (SEM), shown in Figure 1, was used in this study to inform the development of the interview questions (see Table 1) and data analysis. The SEM considers that the social determinants of health influence changes in behavior at four different levels: individual, relationships, community, and society.11 The SEM can help to explain how various social and ecological factors influence the relationships within groups.10
This was a qualitative descriptive study,12,13 conducted in two bateyes in the Dominican Republic. Qualitative description is a method of real-life perception that uses low inference interpretation to present the facts of an experience in everyday language.14 Qualitative description has been used by other researchers in health care to explore participants’ experiences and to stay closer to their data.14 The authors of the study wanted to identify and better understand the factors influencing the ability of adults with T2DM to self-manage their disease. The study was conducted with health care providers and team members of Fundacio Enciende una Luz (FEUL), an NGO that provides T2DM care, via mobile pop-up clinics, to adults living with T2DM in the bateyes. Members (n = 12) of FEUL volunteered to participate in this study. FEUL was founded in 2008 with a mission to improve the health of Haitian migrants living in Dominican batey communities. FEUL currently serves a total of 13 bateyes and hosts a mobile pop-op clinic in each batey every 3 months. The FEUL team that forms the mobile pop-op clinics in the batyees includes doctors, nurses, pharmacists, dentists, and Spanish/Creole interpreters. Regarding T2DM care, FEUL provides health education, screening, and treatment (ie, oral medications) to adults living in two bateyes, Cacata and Magdalena. However, FEUL has limited resources, hence they are not able to provide comprehensive care. The mobile pop-op clinics are prearranged and held in the batey church or school. FEUL identifies a promotora (ie, health promoter) in the batey. The promotora is a trusted community member who assists the community with medication distribution, family planning, and general health counseling.15 In the bateyes, the promotoras help with the mobile pop-op clinics by securing locations and informing community members of the mobile clinic’s schedules. The promotoras receive training, medical supplies, and a small stipend.
Inclusion criteria for this qualitative descriptive study were (a) being 18 years old or older, (b) having worked or volunteered for FEUL within the last 2 years and for at least 6 months, and (c) being part of the mobile pop-up clinic’s health care team providing care for adults living with T2DM in the bateyes Cacata and Magdalena. Exclusion criteria were (a) being younger than 18 years old, (b) not having experience working or volunteering in FEUL within the last 2 years or for at least 6 months, or (c) not working with batey residents with T2DM.
A recruitment flyer was sent via email to the FEUL executive director, who distributed the flyer to a pool of 20 potential participants. Interested participants were asked to contact a study team member via email. Information was provided to interested participants via email and again via video conference (ie, Zoom) prior to the interview. Participants were also asked to share the recruitment flyer with current and recent FEUL staff members to enhance recruitment.
Twelve members of FEUL volunteered to participate in the study. All participants were or had been part of the FEUL team providing health care to adults living with T2DM in the bateyes Cacata and Magdalena. Institutional Review Board approval was obtained from the University of Missouri. Interviews were conducted via video conference (ie, Zoom). The participants read the consent via the screen-sharing feature in Zoom and verbally agreed to participate in the study. Participants received $50 as compensation for their time. Prior to the interview, participants were told they could stop the interview at any time and would still receive their compensation. One researcher conducted all the interviews in Spanish during December 2021. A semistructured interview guide was used with probes to follow up leads and expand the questioning if any new information was discovered during the interview (see Table 1).
All 12 participants completed the interviews; all interviews were video- and audio-recorded using Zoom’s recording feature and later transcribed verbatim. Data saturation was reached after 10 participants. Two additional interviews were conducted; however, no new data emerged. All interview recordings were saved on a passwordprotected laptop. Data were transcribed verbatim and de-identified to protect the participants’ confidentiality. Video recordings were deleted after transcription.
The data analysis was conducted in Spanish by 2 bilingual (Spanish/English), bicultural nurse researchers: the researcher who had conducted the interviews and a second researcher who did not have contact with the study participants. Qualitative conventional content analysis was used to analyze the data.16-18 The advantage of using qualitative conventional content analysis is gaining direct information from the study participants, in this case, participants’ experiences providing services to batey residents, without preconceived categories.16 Two researchers independently listened to each audio-recorded interview while reading the transcript to ensure accuracy, add context, and familiarize themselves with the data. Each transcript was read line by line, and significant quotes were extracted. The quotes were used to identify codes and patterns in the data. The researchers then met together to discuss their analysis, and if there were any discrepancies in coding, the researchers discussed them until reaching a consensus.18 After the 2 researchers had reached an agreement about the initial analysis, 2 study participants were invited to review and to provide feedback of the themes and subthemes extracted by the researchers. Exemplary quotes were selected and translated to English for publication purposes.
Participants (n = 12) were 5 males and 7 females who were current or past members of FEUL, a Dominican NGO serving Haitian migrants. Participants were 4 physicians, 2 registered nurses, a program director, an analyst, a driver, a public relations coordinator, a pharmacist, and a translator. All participants were Dominican citizens. All participants had participated as part of the FEUL team providing care to adults living with T2DM in bateyes Cacata and Magdalena.
Members of FEUL identified several factors that they perceived had an impact on the management of T2DM among adults living with the disease in Dominican bateyes. A scarcity of resources (escacez de recourses) was recognized by all participants as a major factor that impacted managing T2DM. This scarcity of resources emerged as the overarching theme with 4 main themes and 1 subtheme: (1) low health literacy, (2) cultural beliefs, (3) lack of infrastructure, and (4) political issues/strategies to gain trust (see Table 2).
Every participant in this study emphasized, in detail, the difficult life that people lead in the bateyes, focusing mainly on the lack the most basic resources. The scarcity of resources negatively influenced health in general, particularly the lack of access to healthy food and water, coupled with a lack of infrastructure. In addition, participants emphasized the negative impact that such scarcity had on T2DM health outcomes. Batey residents, most of whom are undocumented, have only 1 option for employment, and it is working in the sugarcane fields to maintain their housing. Batey residents do not seem to fully understand the negative consequences of uncontrolled T2DM. Participants felt that this lack of understanding resulted in challenges with following health care providers’ recommendations. Moreover, batey residents’ did not have experience with obtaining health care services in their home country or in the Dominican Republic because the government provides no health care benefits for Haitian migrants. Additionally, Haitian cultural beliefs included practicing witchcraft and voodoo and a disbelief in Western medicine. One participant described life for people living in the bateyes as follows: “Life for them is difficult. They live with scarcity. They have few clothes to cover (their bodies). In most of the bateyes there is no electricity. It is difficult to get water.” Participants repeatedly stated that batey residents are “constantly trying to survive day-to-day.” Participants all felt that the scarcity of resources (escacez de recursos) was the most significant factor that made living with a chronic condition, such as T2DM, very challenging for batey adults.
Nearly all the participants felt that a low level of knowledge about health and diabetes impaired the ability of batey residents to understand the complexity of how to manage their T2DM. Health literacy is the individual capacity to obtain, understand, process, and communicate basic health information and be able to make the appropriate health decisions.19 The participants described the level of health literacy among Haitians living in the bateyes as low. Most adults living in the bateyes received little or no education during childhood in Haiti before migrating to the Dominican Republic. Moreover, a large percentage of adults living in the bateyes speak only Haitian Creole even though the primary language in the Dominican Republic is Spanish. Participants felt that the language barrier made it more difficult for Haitians newly diagnosed with T2DM to understand the disease. The participants discussed the adults’ difficulty with processing new health information as “one of the greatest difficulties.”
In addition, participants felt that low diabetes health literacy contributed to challenges with following diabetes treatment recommendations, particularly taking diabetes medications as prescribed. Participants felt that batey adults living with T2DM did not really understand the complexity of the condition or the importance of adhering to their diabetes treatment. Often, the batey individuals living with T2DM failed to attend mobile pop-op clinics for a variety of reasons such as working in the sugarcane fields or because they were babysitting their children or grandchildren. Moreover, when the batey residents did attend the pop-up clinic, they frequently had “quite a bit” of diabetes medication leftover. When the FEUL health care workers asked questions about the missed doses, the batey residents explained with statements such as: “I wanted the medication to last” or “I forget to take it every day.” Additionally, participants stated that some of the adults living with T2DM took the diabetes medication only when they “feel that they need it.” One participant explained as follows: “Adults living with T2DM do not understand the complexity of their disease, they do not establish a routine of taking the medications every day . . . they take the medication only when they remember, or when they do not feel well.”
Participants also discussed the issue of low education level, in general, among the batey residents. Most batey adults received no formal education in Haiti before migrating to the Dominican Republic to live in the bateyes. The batey community provides limited opportunities for formal education because only a few bateyes have a primary (elementary or middle) school. There is even less opportunity for a high school education or beyond. Additionally, a large percentage of adults living in the bateyes speak only Creole even though the primary language in the Dominican Republic is Spanish, making it more difficult for the residents to comprehend information about T2DM, especially at diagnosis.
Haitian migrants living in the bateyes remain close to their cultural beliefs, including cultural and religion beliefs. Nearly all study participants cited cultural/religious beliefs as a significant factor that they felt negatively impacted T2DM self-management among the batey residents. Participants described mistrust by Haitians about medical providers that practiced Western medicine. Participants stated that Haitians were accustomed to addressing chronic diseases, such as T2DM, with treatments, such as witchcraft.
Participants cited the use of witchcraft/Voodoo as a barrier to enhancing T2DM management. One participant described the use of witchcraft to treat health conditions in this way: “For example, when a person has a situation, he/she is having health difficulties, the first thing he/she believes is, it has to be witchcraft, then, instead of going to see a [Western medicine] doctor, they go to a witch.”
In addition, participants also described their Haitian patients’ beliefs surrounding the management of diseases with strategies that included drinking teas and herbs and praying with the community Voodoo leader. Voodoo is a folk religion that has been closely linked to Haitian culture.20 Voodoo is a religion used to heal and/or poison people that emerged from African culture and European Christian rituals.21 Participants discussed how adults living with T2DM in the bateyes trusted Voodoo priests more than they trusted health care providers such as physicians and nurses. One participant described diabetes cultural beliefs as follows: “When a [Haitian] person in the batey has diabetes, and he/she has a necrotic foot, he/she would think the neighbor poisoned them, and they will go to the Voodoo priest [for care] instead of a medical provider.”
Additionally, the participants cited that some adults living with T2DM, even if they see a Western medical provider will not follow the medical provider’s instructions, expecting to be healed by God. A participant shared this perspective: “Batey residents do not seek medical help for T2DM; they simply believe prayers or invocations to Voodoo will solve a health problem. For example, there are some patients who tell you, I do not take pills; the Lord heals me.”
Participants cited the lack of infrastructure in the bateyes as a barrier for T2DM self-management. The factors affecting disease management in the community included limited access to education, infrastructure, health care, and proper nutrition. One of the participants stated: “They [adults living with T2DM] live different than us. They live in precarious conditions; they live in small houses without water and electricity; they cannot go to a doctor if their blood sugar is high or low.”
There is only 1 option for employment in the bateyes. To live in the bateyes, a family member must work for the sugarcane company, which entails cutting and harvesting the sugarcane by hand. The families living in the bateyes depend economically on the small earnings a family member (usually a male) brings from working in the sugarcane fields. Sugarcane field workers earn their wages by meeting daily production quotas for cutting and harvesting the sugarcane. Most of the men living in the bateyes have to work in the sugarcane fields to maintain their housing and provide for their family.
Nearly all participants cited that working long hours in the sugarcane fields—for male adults living with T2DM—was a barrier to caring for themselves. Male workers had no access to the FEUL pop-op clinics because of their work schedule from sun up to sun down. FEUL pop-op clinics had to be held during daylight hours because of the lack of electricity. In addition, the pay that sugarcane workers receive is reduced if they leave for a few hours to attend the pop-op clinic. Hence, the males often missed the only opportunity to receive T2DM care, including refilling medications. One participant stated: “For example, there are patients who, because they work, sometimes cannot get to the clinic . . . but it is understandable because they must work to survive.”
Poverty and the lack of resources was discussed by participants as a factor that made it challenging to help batey residents manage their diabetes. In particular, the lack of electricity was troubling regarding T2DM management. A lack of refrigeration was a substantial barrier to the ability to manage T2DM for batey residents who really needed insulin. As one participant explained: “If an adult living with T2DM does not respond to metformin and glipizide, we cannot provide insulin for treatment because there is no electricity in the batey [to refrigerate the insulin].”
All the participants emphasized, in detail, the fact that batey residents have little or no access to nutritious food. One participant stated as follows: “There are times when batey residents only have bread to eat; then, they eat only bread.” Participants were concerned that people with T2DM living in the bateyes could not follow a diabetic diet due to limited access to healthy food, such as fresh produce. All participants stressed the constant struggle for the residents of the bateyes to have enough food. Many participants expressed sentiments like the following: “Residents of the bateyes do not have enough food; thus, making healthy food choices is not a priority.” The participants stated that most of the available food in the bateyes is rice and potatoes, which are high in carbohydrates. In addition, batey residents often chew on sugarcane as a food source. Hence, as one participant explained: “We are frustrated when we provide healthy diet education to the members of a community with food insecurity, knowing they cannot make healthy food choices because the lack of food in general.”
The participants discussed broad societal factors that helped identify the barriers to T2DM self-management affecting the batey community.16 These factors involve social and cultural norms that influence the management of a chronic condition, including political policies that help maintain economic or social inequalities within the population.2 The participants discussed how Haitians’ work in the sugarcane fields is informal and they are ethnically segregated, getting the lowest paying jobs. The participants also discussed how the political situation in the Dominican Republic impacts the Haitian migrant community.
Many of the residents of the bateyes lack legal documentation, citizenship, or even birth certificates. Hatians living in the Dominican Republic have no right to citizenship even if they are born there.4 The undocumented status of Haitians living in the bateyes with chronic diseases, such as T2DM, is a significant barrier to access to health care. Many batey residents have never traveled outside of their community.
One participant described the situation in this way:
There is currently a political problem between the Dominican Republic and Haiti. Since most of the adults living with T2DM in the bateyes are [undocumented] Haitians, they cannot seek help in public [health] centers due to fear of deportation; then, they rely solely on the services we [FEUL] can provide.
Participants emphasized that due to the political issues, together with the strong cultural belief in witchcraft and voodoo in the batey community, it was important to establish relationships and build the batey residents’ trust. Establishing and maintaining a positive relationship with the batey community members, community leaders, and promotoras (health promoters) was felt to be a bridge to enhance health outcomes.
All participants reported great satisfaction in working with the batey residents and stated how rewarding it is to work with this community. The study participants agreed that building relationships with the community enhance health outcomes. A person’s closest social circle—peers, partners, and family members—can influence one’s health behaviors.11 All those interviewed for this study mentioned that serving the batey community had changed their perspective on life. Many participants felt that working with the batey people provided satisfaction and helped them personally as well. As one participant explained:
My experience working with them [the batey community] is very good. When we go to the batey, and we see people who live in different conditions than ours, and we know we can help them, and they receive you happily, and we see their happy faces, that is very rewarding.
The participants discussed how some batey residents had never seen a health care provider. Hence, some batey residents did not initially trust the members of the FEUL team or medical providers in general. This mistrust was felt to influence the ability to help people manage their diabetes: “Sometimes, they [batey residents] are a little incredulous; they do not believe in what the medical provider tells them.” The NGO members have developed strategies to enhance positive relationships with batey residents. Of note, a few of the NGO members are of Haitian descent and speak Creole. To deliver diabetes education in a culturally relevant manner, there are face-to-face charlas (chats) during their visits to the bateyes. During these charlas, the NGO’s medical providers build relationships with the community members and gain their trust. These relationships serves to enhance the delivery of health education and also empower the adults living with T2DM to make behavioral changes to improve their health. As one participant explained:
I feel very good working with the batey residents. They listen to us, and some open up to and tell us their life stories, they explain their situation and their problems, they talk with us about their disease, how it is going with their life, the way they feel. To me, that is a privilege. It is extremely important to me.
To further enhance trust between the FEUL members and the batey community, a program called Multiplicadores (multipliers) targeting young people in the bateyes was developed by the NGO. Young batey residents, ages 13 to 21, receive health education and diabetes prevention and health care information. The young people are coached to build relationships with adults who may be at risk for or are living with T2DM. The young Multiplicadores “build relationships with adults affected with T2DM to help them if they need it.” Furthermore, the young Multiplicadores have access to technology because some have cell phones. Hence, the youth can communicate with FEUL members quickly if they have questions or concerns about the adults living with T2DM. The participants emphasized that the Multiplicadores program’s goal is to build trusting relationships. As one participant explained: “We want the people living with T2DM to see the young Multiplicadores as their support system when the FEUL members are not in the batey.”
This qualitative descriptive research study aimed to identify and better understand factors that impact T2DM selfmanagement for Haitian migrants living with diabetes in Dominican batey communities. Furthermore, this study sought to better understand the resources needed to enhance diabetes health outcomes for the batey community. Although other studies have explored resources and social support for adults living with T2DM in the rural areas of the Dominican Republic,6,22-24 there has been little focus on T2DM self-management among the Haitian batey population.
This study found several barriers to T2DM self-management. Although some barriers that were identified may not be modifiable, this study did identify some that are potentially modifiable. For example, relationship building may enhance diabetes health outcomes in the bateyes. Members of FEUL have developed strategies to gain the batey residents by creating programs such as the Multiplicadores. Engaging young community members and family members in T2DM care is a viable strategy. Other potential strategies to enhance T2DM outcomes include nurturing partnerships between social service organizations, community leaders, and political leaders. Such relationships are critical for successful implementation of future community-partnered interventions.
In addition, there is a need to look to the work of researchers that have implemented interventions in other rural, underresourced areas to achieve access to fresh produce and increase consumption of fruits and vegetables.25,26 Such interventions include building community gardens and farmers markets to increase access to healthy food, including fruits and vegetables, among community members.26 Given the lack of access to produce and other healthy foods in the bateyes, the use of community-partnered research methods27 could be utilized to implement similar interventions in the bateyes.
The lack of electricity played a significant role in the inability to adequately manage T2DM in the bateyes. Due to lack of refrigeration, insulin could not be provided by the NGO. However, recent research studies have demonstrated that insulin can be stored at warmer temperatures than previously recommended.28 In a study conducted in Dagahaley, a refugee camp in northern Kenya, by researchers from the international medical humanitarian organization Médecins Sans Frontières and the University of Geneva, insulin was exposed to temperatures warmer than the manufacturer had recommended for longer periods of time than recommended.29 In this study, temperatures were simulated in the laboratory mimicking temperatures in Kenya’s rural areas. Replicating successful strategies from this Kenyan study could have significant implications for the rural bateyes, where electric power is unavailable.
Other researchers suggest combining education with culturally sensitive interventions to empower adults living with T2DM.15,16 Culturally sensitive, adapted, and reasonably feasible interventions are also affordable and can have a positive impact when implemented in rural areas.15,16 Health care workers and peer supporters from the same community who spoke the same language as the participants and providing interventions in the participants’ well-known setting (eg, participant’s house) were shown to enhance cultural sensitivity15,16 and led to positive health outcomes for adults living with T2DM, such as decreased glycated hemoglobin.
This qualitative descriptive study had limitations that may have influenced the interpretation of the results. Findings from this research study are not generalizable to other rural populations. Semistructured interviews were conducted via Zoom, and there might have been distractions, such as unstable Internet, that could have influenced the participants’ responses. The participants, who were members of FEUL, inherently focused on barriers and perhaps were less likely to see potential facilitators. Finally, data were collected in Spanish, and translation of the exemplary quotes to English may have resulted in a loss of nuances. Despite these limitations, this research study revealed key findings that could provide a path to enhance diabetes self-management within this population.
There is a need to enhance T2DM self-management among adults living with the T2DM in the batey community. Findings from the current study suggest that health education, mobile clinics, and grassroots efforts such as the Multiplicadores program may facilitate the promotion of healthful behaviors to manage T2DM. Past studies that have focused on enhancing T2DM outcomes among adults living with T2DM in low- and middle-income countries9,30-36 have also identified similar strategies that enhanced T2DM health outcomes (ie, use of cultural tailoring, engaging community health workers, providing peer support).9,30-36 While addressing T2DM in the bateyes may be challenging and complex, novel interventions are still needed. Community-partnered research methods37,38 seem prudent to overcome barriers and to enhance facilitators that may promote T2DM self-management and improve health outcomes for adults living with this disease in low-resourced communities.
Funding for this study was provided by The Research Foundation.
Rosalia Molina https://orcid.org/0000-0001-7347-554X
From Research College of Nursing, Kansas City, Missouri (Dr Molina, Dr Enriquez); and Sinclair School of Nursing, University of Missouri, Columbia, Missouri (Dr Molina, Dr Enriquez).
Corresponding Author:Rosalia Molina, Research College of Nursing, 9238 Leawood, Kansas City, MO 66206, USA.Email: rosalia.molina@researchcollege.edu
