Abstract
Objectives:
To (1) describe barriers to diabetes prevention and self-management, (2) explore how religious beliefs inform diabetes prevention and self-management and (3) describe community action strategies to address the problem of diabetes locally.
Design:
Qualitative, descriptive design.
Setting:
Three Moravian Churches located, respectively, in Bluefields, Pearl Lagoon and Tasbapounie on Nicaragua’s Southern Atlantic Coast.
Methods:
Using convenience sampling procedures, local church pastors or leaders, health professionals and local lay adults with or at-risk for type 2 diabetes were recruited. Structured by an interview guide, focus groups were conducted. Data were analysed using Krippendorff’s content analysis method.
Results:
Barriers to diabetes prevention and self-management behaviours included financial constraints, inconsistent availability of diabetes medications and testing supplies, and limited diabetes knowledge. Religious faith was identified as central in coping with the daily demands of preventing or self-managing diabetes. Community action strategies to address diabetes included (1) the formation of interdisciplinary diabetes teams, (2) church-based diabetes care and (3) public health announcements.
Conclusion:
Findings informed culturally sensitive diabetes prevention and self-management education through the identified community action strategies.
Diabetes is a global pandemic. Over 8% of the world’s population live with diabetes, while estimates project that by 2035, prevalence rates will increase to >10% (Sicree et al., 2009). Nicaragua is disproportionately affected by diabetes with current prevalence estimated at 10% and prevalence anticipated to approach 12% by 2030 (World Health Organization, 2005). Nicaragua has the fourth highest rate of diabetes in the South and Central American region and the eighth highest rate (12.9%) of impaired fasting glucose (pre-diabetes) in the world (International Diabetes Federation, 2013; Sicree et al., 2009). To address the escalating diabetes epidemic, the Pan American Health Organization (PAHO) (2007a, 2007b) and Nicaraguan health policy call for the development and implementation of novel models of evidence-based diabetes prevention and self-management.
Type 2 diabetes (T2D) accounts for around 95% of all diabetes cases. T2D complications (stroke, heart attack, blindness, amputations and kidney failure) are precipitated and synergistically antagonised by elevations in weight, A1C (gold standard indicator of glycaemic control), lipids and/or blood pressure (American Diabetes Association, 2016). T2D prevention interventions demonstrate prevention or delay of diabetes onset in adults with pre-diabetes (Diabetes Prevention Program Research Group [DPPRG], 2002, 2009). T2D self-management interventions demonstrate a ~1% reduction in mean A1C level in adults with T2D (Norris et al., 2002). Clinically relevant, each 1% reduction in mean A1C level is related to a 37% decrease in the risk of kidney and eye disease and a 21% reduction in any diabetes complication or death (Stratton et al., 2000). For Nicaraguan minority ethnic populations, both Miskitos and Afro-descendent Creoles, receipt of T2D prevention and self-management education is modest with few programmes offered in community-based, culturally sensitive settings (Newlin Lew et al., 2010a, 2010b, 2015).
Miskitos and Creoles comprise the largest minority ethnic groups on Nicaragua’s Atlantic Coast. Once under British control, the Atlantic Coast is culturally distinct from Nicaragua’s central and Western regions, with English remaining as a favoured language for many in home and community settings, such as churches. Nicaraguan nationalised health care, largely provided by health professionals of Hispanic ethnicity, may be met with distrust by minority ethnic populations on the Atlantic Coast secondary to cultural and linguistic differences with health care providers (PAHO, 2007b).
To address Nicaragua’s disproportionate rates of diabetes and pre-diabetes on the Atlantic Coast, a multi-phase community-based participatory research (CBPR) study was undertaken (Newlin Lew, 2015, Newlin Lew et al., n.d., 2010a, 2010b). Described herein is Phase 2 of this work, which aimed to inform local development and implementation of community-based diabetes prevention and self-management programmes for minority ethnic groups on Nicaragua’s Atlantic Coast. Phase 1 involved community dialogue activities: (1) church-based forums and (2) interviews with local stakeholders (nurses, church leadership, health ministry officials and lay public with or at-risk for T2D). Dialogue activities promoted local description of the diabetes problem in order to heighten local awareness and generate community-based solutions. Involving three Nicaraguan Atlantic Coast communities populated by Miskitos and Creole people, dialogue activities (N = 106) identified diabetes as a growing public health problem; severely limited access to healthy foods, diabetes specialists and education as primary concerns; and high interest in developing church-based diabetes education programmes led by nurses to address the increasing rates of pre-diabetes, diabetes and related complications (Newlin Lew et al., n.d.). Reported here, Phase 2 of the multi-phase CBPR study qualitatively explores the problem of diabetes and related factors among health professionals and lay adults with or at-risk for diabetes on Nicaragua’s Atlantic Coast.
Guided by earlier Phase 1 findings described above (Newlin Lew et al., n.d.), the study aims to answer the following research questions:
What are the perceived barriers to diabetes prevention and self-management?
How do religious beliefs inform diabetes prevention and self-management?
What community action strategies may be implemented to address the problem of diabetes locally?
Methods
Study design
The study followed a cross-sectional, descriptive design with focus group interviewing. One focus group was held in each study location for a total of three focus groups, collectively.
Setting and sampling
This study took place at three Moravian Churches located, respectively, in Bluefields, Pearl Lagoon and Tasbapounie on Nicaragua’s Southern Atlantic Coast. The target population comprised local church pastors or leaders, health professionals and local lay adults with or at-risk for T2D. Eligibility criteria included age ⩾ 21 years, English-speaking and self-identification as a church leader, registered nurse, physician or lay adult of Miskito or Creole ethnicity with or at-risk for T2D. Using convenience sampling, participants were voluntarily enrolled after providing informed consent in accordance with the protocol approved by the institutional review board of Florida Atlantic University (n.d.).
Measures
An interview guide structured the respective focus group interviews. The interview guide addressed the following: (1) perceived barriers to diabetes prevention and self-management behaviours, (2) religious health beliefs in the context of preventing or living with diabetes and (3) community-based actions strategies to address the problem of diabetes on the Atlantic coast.
Data collection and analysis
Qualitative data were collected by trained research assistants. Focus group interviews were each ~60 minutes in duration and were audiotaped. The audiotapes were transcribed verbatim and integrated, thereby yielding a comprehensive transcript for analysis. To answer the study’s research questions, focus group data were analysed using Krippendorff’s (2004) content analysis method.
Focus groups were conducted in English and Creole English, and quotes are presented here in standard English spelling with grammar and word order as it was spoken. There is currently no standardised written form of Nicaraguan Creole.
Findings
The sample (N = 42) predominately comprises lay Creole and Miskito adults (70%) with or at-risk for diabetes. Slightly greater than 20% of the sample consisted of health professionals (nurses and physicians) and nearly 10% were local religious leaders (church elder or pastors of varying denominations).
Barriers to diabetes prevention and self-management
Lay participants often described their diabetes self-management in terms of ‘we try our best’ given existing barriers. Perceived barriers to diabetes self-management included financial constraints, dislike of exercise, inconsistent availability of diabetes medications and testing supplies, and limited knowledge related to diabetes prevention and self-management. Financial constraints or limited income were most commonly described as barriers to diabetes prevention and self-management, thereby adversely affecting dietary patterns. A church leader from Bluefields, for example, stated that
Most people don’t have the right foods, and this is a problem … People are very poor and most people thrive on, let’s say, a dollar per day. Sixty percent of this population, that is national, is impoverished. People just can’t afford to buy the food that they should be consuming as diabetics.
Closely related, a female lay participant from Pearl Lagoon said,
It is very difficult here for us because sometimes … we don’t have economical … we don’t have money here … Vegetables, everyday, the thing [price] is going up. Me, personally, I eat whatever I could find. I eat anything …
Another woman also from Pearl Lagoon stated,
I try my best to have my shot and food in time and try to see all the things I need to eat to keep my sugar low … Really, sometimes, it is really hard here for us because our problem is … [we] don’t have the money to find the things, it is very hard for us here but we try our best.
A Tasbapounie woman indicated that purchasing vegetables was difficult due to decreased affordability and availability. She continued, ‘vegetables are really hard to get in our community. Most of all, we eat starch. We hardly get vegetables’.
In terms of exercise, many reported frequent walking up to several miles per day, among other physical activities. For example, some Tasbapounie respondents reported walking on the beach and ongoing participation in a daily walking group established through the Moravian Church. Others, however, reported a ‘dislike’ of exercise. Upon our recommendations for physical activity, a physician participant explained, ‘we don’t have a culture of physical activity’. Adults often believe they are ‘too old for that’ and that exercise is for the ‘young people’. He continued,
We explain they [our patients] have to take care of the diet, physical activity to keep the sugar, the pressure under control, to keep their weight under control. When we told the patients they need to make more diet, they say they have economic problem to buy more fruit, and not enough money for meat … and then they eat plantain. When they get money, they don’t eat enough fish, they don’t eat enough chicken. And I think they like eating plantain, they eat more than what they need, and that is why their sugar level is very high … Our patients are not taking care of themselves.
Inconsistent availability of or access to diabetes medications and testing supplies was described as a barrier to diabetes prevention and self-management. As one woman from Bluefields explained, ‘sometimes we can get our treatments [medications], and then there are some months where we don’t get treatment …’ Another shared that although a ministry of health clinic was available in Tasbapounie, diabetes treatments or medications are not always available: ‘Not everyone, but the majority gets their medicine in Bluefields’. A layman from Tasbapounie revealed,
Sometimes you don’t have the money to go to Bluefields, and when you do get the money and papers to go, you go to the hospital and maybe they give you some medicine, and you return back, and you take a couple months before you can get enough money to go back.
In terms of diabetes self-management knowledge and skills, local health professionals provided important insight. As explained by one physician participant, diabetes education programmes are available at the local government clinic but community members with diabetes do not fully access these services and may not follow prevention and self-management recommendations. He further stated,
I feel like the population in this town [Bluefields] they don’t know plenty about this sickness [diabetes] … Most patients that we have … they’re very fat … that’s because they don’t have enough activity. So, I think our patients need to make more diet and more physical activity to keep under control their sugars … This would help to avoid complications. … And it’s hard to explain that to them [our patients]. We explain that every meeting. Every two months, we have a meeting with them trying to explain that to the patient, but they hardly do it. Every year, we are having more and more patients who have this sickness [diabetes], and they think that taking pills is all they have to do. They think that you just take one pill and that’s it. And when they have a complication they go to the doctor, but otherwise they don’t go to the doctor.
A female nurse expressed,
Our people are perishing from diabetes … they are losing limbs and becoming blind at a very early age because they aren’t aware, don’t have special knowledge as to what diabetes means … There is a total ignorance as to what this disease implies and complications because it is a gradual decaying of the body’s organs so people don’t feel pain right now, but over the years it is going to create havoc, so people need to be aware of this.
Religious beliefs and diabetes
Several study participants emphasised how religious faith was central to coping with the daily demands of preventing or self-managing diabetes. God was further identified as a source of healing for many. Less frequently, God was viewed as willing diabetes. Also for many, religious beliefs informed a commitment to serve community members to ameliorate their diabetes burden.
For some participants, religious faith provided strength in living with diabetes. One lay Bluefields woman explained, ‘Before I take my treatment [medication], I pray to the Lord to help me. If there is something I need God to help me with, God will really, really help’. A woman from Pearl Lagoon shared, ‘I think my faith is what have me holding on because I leave everything in the Lord … I leave everything in his hands’. A lay Pearl Lagoon man stated, ‘I am a Christian, and I have a strong faith in God. I am a diabetic … so this kind of reinforces my belief system that I am going to make it through.’ A male participant from Tasbapounie also spoke about diabetes in terms of religious faith:
The Bible said that if we hold our peace, God will fight our battle and … [diabetes] comes as a battle in the inner part of a person. And if we don’t find peace, we will be terrified … Focus that you are such a special person in the sight of God … Concentrate and meditate and start focusing that you truly are not alone.
For some participants diabetes onset was seen as possibly the will of God as well as dietary behaviour. Another lay male participant from Tasbapounie explained,
In the Bible when God says on this day there will be sun, etc … God could be sending this sickness maybe. Maybe because we are disobedient. Some people say no to sweet in their coffee, but I like it sweet. I walk around scared because its [diabetes] coming. I know it is imminent.
Yet, for others, God was described as willing health for ‘his children’ and a means of curing diabetes. One woman from Pearl Lagoon, for example, said that ‘God doesn’t want to see you sick’. A lay Tasbapounie man revealed that ‘even though we get medical attention, deep down, without God, we are not going to get cured of this sickness’. Another man from Tasbapounie shared,
Put God first in our lives because with Him, everything seems possible. So, therefore we should always say that even though we come from families who are diabetics, we may pray and have faith that we are not going to get it.
Religious faith was also described as inspiring service for others in the community. One female participant from Pearl Lagoon explained,
We make it a privilege to go visit the sick. Every evening we go to visit the sick. We go to visit the sick because they cannot come out either so that’s the reason … By doing that we are doing our part by sharing the Word of God in songs with them, and we are helping ourselves by walking with them.
Community action strategies to address diabetes
Community action strategies identified by participants to address diabetes included (1) the formation of interdisciplinary diabetes teams, (2) the provision of church-based diabetes care and (3) public health announcements. Diabetes teams or a volunteer teams consisting of pastors, nurses, physicians and lay people were identified as a key community action strategy to address the problem of diabetes. Participants expressed the view that diabetes teams may be able to reach populations not currently receiving care at the health department. A female nurse remarked,
We can ‘inform our people where to start and give good instruction that they can understand and value themselves as people that need to live as long as God give them the privilege.
Another participant from Tasbapounie shared,
I think a pastor is one of the main people that can be part of the team because they are using the Word of God, and they have faith to believe God can do great things for the people. And I believe that is where we begin.
A nurse from Bluefields underscored the promise of a church-based team:
I think this would be one of the necessary points, to form one team in the church and we can see patients that are in the church and that maybe don’t even know that they have diabetes and we can tell these people to go to the health centre … I feel like that would be good. I think right now we only have one group, only one place [at the ministry of health clinic] to see the patients. But if we have a diabetes team in the church, maybe we could get more patients and we have the possibility to have our influence to more patients … I think it’s very important … We will have a nurse and a doctor, and an education on how to take care of yourself.
Another nurse from Bluefields concurred while emphasising that church-based diabetes teams may outreach into the communities:
Yes, definitively, it is needed. There are very few trained personnel especially in the diabetes area. The more people we get to go to the communities, [then] we will cover a wider sector of the population. And some people who wouldn’t normally come [to ministry of health clinic] may go to them [church diabetes team]. So if we train people and we have [the] team go to the neighbourhood, other people will get help. Definitely, an excellent idea.
Participants widely commented on the need for defining diabetes team goals and training the diabetes team in order to foster its success. A female community member from Tasbapounie shared that with a ‘team that is able to work together and focus on one goal which we want to achieve we will be able to make a difference in our community’.
While also touching on the theme of media and resources, a male participant from Bluefields further added,
I think we need human resources to help train the team and we need to supplement that with medical supplies definitely, because I know that there is a problem in Bluefields. There aren’t any strips for blood glucose testing. So this must be a programme that puts all of this together. All of these things, the human resources, the medical supplies, the literature, funding for publicity on the radio and media, to create awareness so people really become interested in taking care of themselves.
A Bluefields physician underscored that ministry of health health centres have several efforts underway to increase access to diabetes care that could be supported with local diabetes care teams. He further emphasised that media programmes are needed to heighten local diabetes awareness:
I think health promotion is very important because there is a very high lack of education not only in diabetes but in other illnesses that they hear about but they don’t know how to take care of themselves. I think it’s very important for it to air on television and let them realise that it is something serious and it is something that they can take control of.
Discussion
This study provides the first qualitative assessment of the problem of diabetes on Nicaragua’s Atlantic Coast. Perceived barriers to diabetes prevention and self-management behaviours included financial constraints, dislike of exercise, inconsistent availability of diabetes medications and testing supplies, and limited knowledge related to diabetes prevention and self-management. Financial constraints or limited income were also found to contribute to suboptimal dietary patterns with food insecurity reported by some. 1
Limited availability of diabetes medications and testing supplies were also reported. These findings are consistent with those found in a quantitative assessment of diabetes on Nicaragua’s Atlantic Coast (N = 154) also conducted as part of our study (Newlin Lew, 2015; Newlin Lew et al., 2010b). The American Diabetes Association (ADA) (2016) and Latin American Diabetes Association (LADA, Asociación Latinoamericano de Diabetes Consensus Group, 2010; LADA= Latin American Diabetes Association) underscore the importance of adherence to prescribed diabetes medications and self-monitoring of blood glucose to facilitate achievement of glycaemic targets and thereby minimise the risk of secondary complications. However, given the economic challenges facing Nicaragua, adherence to Latin American Diabetes Association (LADA) guidelines is not currently feasible. As the second poorest nation in the Western Hemisphere, data reveal Nicaragua has one of the lowest per capita health expenditure for diabetes in the region (Barcelo et al., 2003).
Limited diabetes knowledge and skills were also identified as perceived barriers to diabetes prevention and self-management. Compelling longitudinal research indicates diabetes may be prevented or delayed through diet and physical activity (DPPRG, 2002, 2009). Likewise, meta-analytic data indicate diabetes self-management education may reduce A1C levels by ~1%, thereby significantly reducing risk of secondary complications (Stratton et al., 2000).
Findings also identify how religious faith is perceived as a source of healing and as central in coping with the daily demands of preventing or self-managing diabetes. Research indicates honouring religious worldviews of patients and incorporating their related religious beliefs and preferences into diabetes prevention or self-management regimens may be critical. Failure to do so may foster distrust of health care providers and limit the relevancy of prescribed diabetes prevention and self-management regimens for patients (Armstrong et al., 2006; Doescher et al., 2000; Jacobs et al., 2006; Newlin Lew et al., 2015).
Community action strategies to address the problem of diabetes on Nicaragua’s Atlantic Coast included (1) the formation of interdisciplinary diabetes teams, (2) church-based diabetes care and (3) public health announcements. Informed by findings from Phase 1 and Phase 2 of this work, an interdisciplinary diabetes teams were established in 2009 along with three diabetes clinics housed in and/or operated through local Moravian Churches located in Bluefields, Pearl Lagoon and Tasbapounie, respectively. Due to issues of security, the Tasbapounie clinic closed in 2011. However, the remaining clinics remain active and have collectively serve well over 1,200 patients in the region regardless of religious affiliation. The interdisciplinary care team is led by a local nursing leader with support from Bluefields and Pearl Lagoon pastors, volunteer nurses and nurse aides, and physicians from local ministry of health locations, who provide regular referrals to the church-based, diabetes clinics.
Informed by our study findings, the church-based clinics provide diabetes prevention and self-management education as well as access to diabetes-related medications and testing while addressing self-management, perceived barriers, religious health beliefs, among other factors. At the clinics, diabetes prevention and self-management education focuses on fostering understanding of the disease process and prevention of related complications. Patients learn about the ‘ABCs’ of diabetes (A1c, blood pressure and cholesterol), associated target values and how elevations in these indicators contribute to disease-related complications. They also learn how medication and self-management behaviours (e.g. diet, exercise and medication adherence) may optimise their ABCs and thereby outcomes.
In terms of diet, for instance, patients are educated on the influence of certain foods on diabetes (e.g. the effect of carbohydrates on blood glucose, the effect of saturated fats on low density lipoprotein cholesterol or the effects of additives on blood pressure). Patients learn about food groups and optimal choices as well as serving sizes with attention to locally available and often affordable food choices. This promotes patient understanding that a healthy diet may be a viable goal for many, despite limited incomes, and does not require special foods. Patients are encouraged to enjoy their favourite, affordable foods but choose one starch (e.g. rice or plantains) per meal (~1/4 plate), one protein (e.g. skinless chicken or fish readily accessible on the coast) per meal (~1/4 plate) and increase their vegetable consumption (e.g. cabbage, tomatoes and carrots) at meals (~1/2 plate) with attention to healthy food preparation. Healthy food preparation education emphasises, for instance, grilling, instead of frying, and the use of vegetable oil. The intake of local, affordable fruits (e.g. mangos) are encouraged but in moderate, and sometimes, modest amounts. Bluefields patients may also be referred to a local green market to purchase affordable fruits and vegetables made possible by the United States Agency for International Development. Patients are encouraged to gradually make changes to their diet with incremental goal setting to foster self-management success. Barriers to dietary goal achievement are addressed at each visit through problem-solving exercises.
Self-management education at the diabetes clinics critically addresses religious health beliefs. Patients expressing religious fatalism are encouraged to share or discuss such beliefs and consider scriptural verses revealing God’s will for health and healing (e.g. Jeremiah 33:6 and 3 John 1:2). Patients sharing their faith in God but reluctance, for instance, to engage in self-management behaviours, such as regular exercise, may be directed to verses underscoring personal responsibility for caring for the body (e.g. 1 Corinthians 6:19–20) coupled with a discussion of why people of all ages require regular physical exercise as indicated. Other approaches to foster enhanced self-management include problem-solving, goal setting and motivational interviewing. All patients are offered prayer as a component of their self-management visits, asking for God’s strength to meet the daily challenges of preventing or living with diabetes.
Addressing barriers to medications and monitoring of blood glucose levels and control, the diabetes clinics provide ongoing resources free of charge. Diabetes-related medications (anti-hyperglycaemic, anti-hypertensive and cholesterol medications), A1C testing (3–4 times annually), blood glucose testing (each visit), foot screening (at least annually), blood pressure measurements (each visit) and weight measurements (each visit) are provided at no cost. Patients on statin therapy have their lipids (collected and analysed at local labs or at the Bluefields ministry of health run health centre) monitored in collaboration with a consulting ministry of health physician for abnormal values. Medications are initiated and/or titrated as directed by ministry of health physicians.
To date, the nurse-led diabetes care team works within the clinic settings with only a limited number of community outreaches implemented secondary to resources and consistent clinic overflow. Clinic overflow has necessitated extended clinic hours in order to not send away community members seeking free diabetes care and medications. Resources for the clinics include volunteer time from a cadre of Nicaraguan health professionals, US health professionals and both individual and organisational donations.
Diabetes prevention and self-management public health announcements and educational programmes are implemented under the auspices of the Bluefields Moravian Church diabetes clinic. Biannually radio and/or television programmes – addressing such topics as physical activity, nutrition, signs and symptoms of hyperglycaemia and hypoglycaemia and related treatment – are provided on local Creole radio and television stations. Radio health promotion programmes allow for live diabetes questions and answers with community members calling into the local Creole station. Most recently, a physical activity programme for older adults was aired on television with instruction provided by a licenced physical therapist. Importantly, with attention to the cultural context, religious health beliefs and practices are respected and addressed in all radio and television programmes. Radio and television health promotion programmes reach remote locations where diabetes prevention and self-management education is particularly limited. Diabetes prevention and self-management public health announcements and educational programmes are funded through private donations.
With the fourth highest rate of diabetes in the South and Central American region and the eighth highest rate of impaired fasting glucose (pre-diabetes) in the world, Nicaragua faces an impending diabetes tsunami. Novel models of care are needed to assist this small country in addressing the problem of diabetes. Additional research is warranted to address the problem of diabetes on Nicaragua’s Atlantic coast.
Footnotes
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: I received financial support from the National Institutes Health, National Institute of Nursing Research F32 NR010043.
