557033 research-article2014
HPPXXX10.1177/1524839914557033Health Promotion PracticeMicikas et al. / Chw Intervention for Diabetes Self-Management
Diabetes Management
A Community Health Worker Intervention for Diabetes Self-Management Among the Tz’utujil Maya of Guatemala Mary Micikas, BSN, RN, MSN(c)1 Jennifer Foster, PhD, MPH, CNM1 Allison Weis, BS, MPH(c)1 Alyse Lopez-Salm, MPH, CHES2 Danielle Lungelow, MSSc3 Pedro Mendez4 Ashley Micikas, BENVD4
Despite the high prevalence of diabetes in rural Guatemala, there is little education in diabetes selfmanagement, particularly among the indigenous population. To address this need, a culturally relevant education intervention for diabetic patients was developed and implemented in two rural communities in Guatemala. An evaluative research project was designed to investigate if the structured, communityled diabetes self-management intervention improved selected health outcomes for participants. A one-group, pretest–posttest design was used to evaluate the effectiveness of the educational intervention by comparing measures of health, knowledge, and behavior in patients pre- and postintervention. A survey instrument assessed health beliefs and practices and hemoglobin A1c (HgA1c) measured blood glucose levels at baseline and 4 months post initiation of intervention (n = 52). There was a significant decrease (1.2%) in the main outcome measure, mean HgA1c from baseline (10.1%) and follow-up (8.9%; p = .001). Other survey findings were not statistically significant. This study illustrates that a culturally specific, diabetes self-management program led by community health workers may reduce HgA1c levels in rural populations of Guatemala. However, as a random sample was not feasible for this study, this finding should be interpreted
Health Promotion Practice July 2015 Vol. 16, No. (4) 601–608 DOI: 10.1177/1524839914557033 © 2014 Society for Public Health Education
with caution. Limitations unique to the setting and patient population are discussed in this article. Keywords: international/cross-cultural health; diabetes; chronic disease; health education; health promotion
Introduction >> Guatemala is a low-middle income Central American country with a population of 15.08 million (World Bank, 2013). Similar to many developing countries, Guatemala is undergoing an epidemiologic transition. While the country continues to experience many of the 1
Emory University, Atlanta, GA, USA Duke University Medical Center, Durham, NC, USA 3 Medical Anthropologist, Atlanta, GA, USA 4 Organization for the Development of the Indigenous Maya, San Juan La Laguna, Guatemala 2
Authors’ Note: Mary Micikas, Alyse Lopez-Salm, Allison Weis, and Danielle Lungelow: All received funding from the Emory Global Health Institute. They received the EGHI multidisciplinary team field scholars award for their research project during the summer of 2012. The purpose of the award is to facilitate interdisciplinary collaboration on global health issues through providing funding for students to partner with local in-country organizations to develop a research project and conduct the field work. Address correspondence to Mary Micikas, Nell Hodgson Woodruff School of Nursing, Emory University, 1520 Clifton Road NE, Atlanta, GA 30322, USA; e-mail: [email protected].
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diseases of poverty such as infection and malnutrition, Guatemala is concurrently experiencing an unprecedented growth in rates of noncommunicable disease (Chary, Greiner, Bowers, & Rohloff, 2012). Sixty percent of the population is indigenous, mainly concentrated in the western highlands of the country. There exist significant health disparities between the indigenous and the nonindigenous, or ladino, population (International Work Group for Indigenous Affairs, 2012). Data indicate that indigenous people in Guatemala have a life expectancy 13 years less than that of ladinos, and they are 2.8 times poorer than ladinos (International Work Group for Indigenous Affairs, 2012). While there is a dearth of publicly available data on the prevalence of type 2 diabetes mellitus (T2DM) in indigenous Guatemala, global, regional, and accessible Guatemalan national data indicate that diabetes prevalence necessitates intervention. The World Health Organization (2013) projects that T2DM will more than triple between 2000 and 2030. In 2012, the International Diabetes Federation (2012) reported that there are 371 million people living with diabetes in the world, and 80% of those cases are concentrated in low- and middle-income countries. In Latin America, the prevalence of T2DM is 9.2%, with 45.5% of those cases remaining undiagnosed; however, only 5% of global expenditures on diabetes are spent in this region (International Diabetes Federation, 2012). Between 2001 and 2003, diabetes rose to the 8th leading cause of mortality and became the 5th leading cause of mortality among women in Guatemala (Pan American Health Organization, 2007). The Pan American Health Organization reported that in 2007 that the prevalence in Villa Nueva, a ladino community outside Guatemala City, was 8.4%, a rate similar to that in the United States (Pontaza et al., 2007). There is even less published evidence regarding the indigenous communities in the western highlands. However, a slowly expanding body of literature and clinical reports suggests that diabetes education and treatment are needed among these communities (Chary et al., 2012). Health organization record reviews and community assessments reflect these local, national, and global findings regarding the increasing T2DM disease burden. The Organization for the Development of the Indigenous Maya (ODIM), the host organization and site for our diabetes intervention, conducted a health needs assessment in the villages of San Juan and San Pablo La Laguna, Sololá between 2009 and 2010. Of the 568 individuals surveyed, 38% identified diabetes as their top health concerned (ODIM staff, personal communication, December 17, 2011). The needs assessment also highlighted residents’ strong desire for health
services conducted in their native language (Tz’utujil) by individuals from their own community. This desire is consistent with much of the literature concerning community health interventions as an essential component of chronic disease management (Boothroyd & Fisher, 2010; Castillo et al., 2010; Fisher et al., 2012; Philis-Tsimikas, Fortmann, Lleva-Ocana, Walker, & Gallo, 2011; Spencer et al., 2011). Community Health Workers ODIM’s needs assessment indicated that the desires of the citizens of San Juan and San Pablo are well aligned with the global trend in which communities prefer chronic disease management inclusive of community-based primary health care, embedded in an empowerment framework (Fawcett et al., 1995; Laverack, 2006). Peer health education for chronic disease management has been shown to improve health outcomes in low resource populations both in the United States (Boothroyd & Fisher, 2010) and internationally, specifically in Cameroon, South Africa, Thailand, Uganda (Fisher et al., 2012), and American Samoa (DePue et al., 2013). In a randomized control trial using the Racial and Ethnic Approaches to Community Health model of community health promoter diabetes management among African American and Latino populations in Detroit, patients’ hemoglobin A1c tests (HgA1c) decreased from 8.4% to 7.5% (p < .01) during the 6-month intervention and selfreported health behaviors improved (Spencer et al., 2011). Another study conducted in American Samoa found that a community health worker (CHW)—nurse diabetes care team improved patient education and self-management (DePue et al., 2013). The World Health Organization’s report on CHWs concluded that CHW programs are effective when they have a well-defined framework, are “driven, owned and embedded in the community,” and are implemented by small-scale nongovernmental organizations. Other crucial program components include specialized, ongoing trainings and financial sustainability (Lehman & Sanders, 2007). The ODIM clinic’s prior CHW program faced challenges, including strain on staff and volunteers due to their many roles and responsibilities, lack of a well-developed and evaluated framework for the project, and insufficient specialized training in diabetes management and prevention. To address these challenges, and the community’s desire for improved diabetes care, a diabetes self-management intervention was developed by a team of ODIM clinic staff, CHWs and four students sponsored by the Emory University Global Health Institute (EGHI).
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The team’s goal was to overcome the limitations of previous CHW initiatives in order to improve the education, support, and ultimately the health and quality of life of diabetic patients in the clinic’s service area.
Background >> To address the growing prevalence of T2DM in two rural Guatemalan communities, and the lack of access to diabetes treatment, education, and prevention, the EGHI team designed a culturally relevant diabetes selfmanagement intervention, Caminemos Juntos (Let’s Walk Together). Participants of the intervention were diabetic patients receiving treatment at ODIM’s rural primary care clinic in the villages of San Juan and San Pablo La Laguna, Sololá in the western highlands of Guatemala, over a 4-month period in 2012. Of note, the program is ongoing at the time of this article’s publication. The two communities have a combined population of about 14,000, of which nearly 100% identify themselves as Tz’utujil Maya, with Tz’utujil as the primary language (Guatemala National Institute of Statistics, 2011). In addition, many of the elderly, women, and young children speak Tz’utujil exclusively. Each community has a Centro de Salud (health center) operated by the national Ministry of Health (MoH). Health care access in general, and specifically for diabetic treatment, varies widely in these communities. Although there is a MoH center that is open 24 hours a day; health center staff are aware that diabetes treatment resources may be insufficient (ODIM staff, personal communication, December 17, 2011). There are a number of private physicians, various nongovernmental organization clinics, and an increasing number of pharmacies where many patients receive consultations and medications. Availability of diabetes treatment through these facilities is dependent on patient resources including transportation, time, and finances. ODIM, as with some other facilities in the area, attempts to mitigate these challenges. ODIM’s methods to promote health care access include financially subsidized services and some transportation assistance. The clinic has more than 5,000 patient visits per year and provides primary care consultations and medications for the equivalent of US$1.33. Consultations for patients with diabetes include, at minimum, a monthly appointment with a local nurse and/or physician and measurement of vital signs, BMI (body mass index), blood pressure, and blood glucose, HgA1C tests every 4 to 6 months, oral medications, and referrals for complicated cases. Though we did not find published local statistics, most health care professionals agree that the prevalence of T2DM has risen significantly
over the past couple of decades, as a result of lifestyle and dietary changes (ODIM staff, personal communication, December 17, 2011). For instance, stores selling chips, candy, and sodas are ubiquitous, and most community members now travel by taxi instead of walking. In 2012, over 150 patients received at least one consult for treatment of T2DM in the ODIM clinic. This presence of low-cost processed food, not previously accessible in these towns, in addition to barriers to accessing diabetes information and quality, affordable care, present significant challenges to diabetes prevention and treatment for ODIM’s clinic patients. Purpose and Specific Aims During the summer of 2012, a multidisciplinary team of four graduate students from Emory University, representing three different schools (Nursing, Public Health, Medicine) as well as varying backgrounds (education, anthropology, research, advocacy) was invited by ODIM to spend 3 months working with the clinic to help meet the diabetic health needs expressed by community members. One purpose of the study was to train CHWs and work with ODIM’s newly designated diabetes program coordinator (DPC) to design and implement a culturally appropriate intervention for diabetes self-management. The lead author worked at the ODIM clinic for over 3 years, and prior to the project had already established strong rapport with the community and CHWs, as well as familiarity with the need for improved diabetes management and education. Informed by focus group discussions (FGDs) with diabetic patients, key informants from the community, and CHWs, the EGHI team designed, implemented, and evaluated a diabetes self-management curriculum and intervention. CHWs were called on to use their knowledge, skills, and experience to promote diabetes self-management in their own communities, functioning as an extension of the health services provided at the ODIM clinics. The team sought to determine if a structured, community-led diabetes self-management intervention could be implemented successfully and whether the intervention could improve selected health outcomes for diabetic patients. The evaluation strategy included observing changes in HgA1c, BMI, and health beliefs and practices among participating diabetic patients receiving treatment at the ODIM clinic.
Method >>
Intervention Overview The EGHI team worked closely with CHWs and ODIM’s DPC to conduct formative research in the
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development of a culturally appropriate intervention for diabetes self-management. As part of this formative research, the team worked with CHWs to conduct two FGDs with diabetic patients, one in San Juan and one in San Pablo. Inspired by findings that indicated that a strong desire for social support in managing one’s diabetes, local staff and the EGHI team named the program Caminemos Juntos (Let’s Walk Together), to highlight two important aspects of diabetes self-management: physical activity and social support. We also referenced various curricula, including the Emory Latino Diabetes Education Program (ELDEP) currently in use in Atlanta (Gonzalez, 2009). Twenty-one CHWs participated in 1 week of daily “train-the-trainer” sessions developed by the EGHI team. This training focused on the diabetes disease process and principles of management. The EGHI team, DPC, and other ODIM staff selected eight of the trained CHWs to work as paid diabetes health promoters through an application and interview process that involved a written evaluation based on training content, observation of each candidate’s instructional style, and feedback from the DPC, who is a trusted community leader with extensive experience in guiding other local staff in health education program implementation. The selected CHWs participated in an additional week of training focused on principles of health education, motivational interviewing, and health behavior theory, in particular, the States of Change model. In addition, we presented FGD themes and engaged CHWs in analysis and discussion of the data (Figure 1). Each CHW then received a caseload of 15 to 20 patients with whom they hold a weekly diabetes club meeting consisting of a focused lesson about a specific aspect of T2DM self-management. Example topics include medication adherence, the importance of knowing one’s blood glucose, proper foot care, portion control, mental–emotional health, and creative ways to make local cuisine more diabetes-friendly. Sessions also included dedicated time for group exercises that consisted of chair exercises, group walking, and relay races. Finally, sessions focused on providing patients with emotional support to deal with the stigma and sadness expressed by many patients who participated in initial FGDs. CHWs also conduct weekly home visits and preconsults in the clinic. The preconsults provide an opportunity for the CHWs to monitor each patient’s progress and engage in empowerment-based support strategies by creating a space to discuss specific challenges, create goals, and tailor individualized exercise and nutrition plans. The EGHI team developed curriculum modules for club meetings for the first 7 months of the program.
Advocacy Home visits/Navigaon Medicaon adherence and accompanyment
CHW preconsults Clinic/Homes Monthly clinic check-ups with CHW and nurse
Educa on Diabetes Club Mini-lessons, exercise, cooking classes, support
Figure 1 Venn Diagram of the Three Elements of the Community Health Worker (CHW) Intervention
This curriculum was informed not only by the findings of the FGDs but also the theoretical assumptions of the Stages of Change Theory and the Health Belief Model (Becker, 1974; Johnson et al., 2008; Prochaska & DiClemente, 1984). Core messages included participant empowerment to make progressive, life-long changes toward a healthy, fulfilling life with T2DM in order to challenge pervasive themes of despair and a sense of fatalism around diabetes diagnoses that surfaced during the analysis of focus group interviews. At 7-months postintervention initiation, CHWs began to develop their own curriculum. This was a purposeful transition in keeping with the empowerment and capacity-building foundation on which this project was designed. Study Design Two FGDs with diabetic participants in the study were conducted preintervention initiation, and four FGDs were conducted at 4 months after initiation of the intervention. FGDs conducted prior to program initiation helped inform the design of the curriculum and program through the assessment of diabetic patients’ current knowledge and past experiences with the disease, as well as their opinions of what could assist them in managing their disease. Follow-up FGDs contributed to the evaluation of the program and elicited patients’ experiences in the program.
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The evaluation component, designed to measure the effectiveness of the intervention, was conducted through a one group, pretest–posttest design. A convenience sample of 120 diabetic patients receiving treatment for T2DM at the ODIM clinic was recruited. Recruitment was conducted through a chart review by members of the EGHI and the DPC. Patients were contacted by the DPC and invited to participate in the study (in Tz’utujil) by phone or home visits. Patients were told their decision was completely voluntary. A Spanish language consent form had been developed as part of the university institutional review board application process. The institutional review board ruled this study exempt because they assessed the project to be program evaluation. Nevertheless, the team followed the ethical guidelines for research with illiterate populations (Nuffield Council on Bioethics, 2002) and obtained verbal consent. Inclusion criteria were as follows: potential participants must be over the age of 18 and a patient of the ODIM clinic with at least one consult in the past year and must have a diagnosis of T2DM. All patients receiving care for T2DM at the ODIM clinic in the year preceding the study were included in recruitment if they met the inclusion criteria. Prediabetic patients were excluded from the study evaluation, although they still could participate in the program. Thus, using the American Diabetes Association diagnostic criteria, patients with an HgA1C below 6.5 and who were not taking medicine for T2DM (metformin, glipizide, glibenclamide, or insulin) were excluded from the study, as a diagnosis of T2DM could not be confirmed (American Diabetic Association, 2013). It should be noted that 11 of these patients, for whom EGHI could not confirm a diagnosis, were allowed to participate in the Caminemos Juntos program, stating that they liked being part of the group and wanted to avoid developing T2DM. A total of 104 patients met inclusion requirements and completed the initial survey and biometric assessments. Fifty-two patients participated in both the preand posttest surveys (Table 1). However, an additional 50 patients who joined the Caminemos Juntos program after the baseline survey, contributed to the follow-up survey. Their data were excluded in the pretest–posttest analysis but will be used for future program evaluation. A pretest–posttest survey instrument used to measure diabetic self-management was adapted with permission from the ELDEP for the specific culture and context of rural Guatemalan communities (Gonzalez, 2009). At the time of the study, the ELDEP survey was undergoing reliability and validity testing. However, the survey was not pilot tested with this particular
Table 1 Participants in the Caminemos Juntos Diabetes Club Demographics Town San Juan San Pablo Gender Female Male Employment Unemployed (housewife) Employed (artisan, construction, agriculture)
% of Participants 46 54 91 9 60 40
population prior to administration due to project time constraints. This 42-item survey contains both closedand open-ended items designed to assess health beliefs and practices related to diabetes, exercise, nutrition, and social support. Social support was measured using the Duke-UNC Functional Social Support Scale (Cronbach’s alpha for this scale ranges from .81 to .92) Sample items included, “I have people who care what happens to me.” and “I get invitations to go out and do things with other people.” (Broadhead, Gehlbach, de Gruy, & Kaplan, 1988). EGHI team members trained CHWs in conducting FGDs and administering surveys. Surveys were written in Spanish but were administered orally to patients by the bilingual CHWs in Tz’utujil, as the majority of the population is illiterate, and many do not speak Spanish. HgA1c (Bayer A1C Now Point of Care cartridges), blood pressure, height and weight were collected by EGHI team nursing students, who trained a clinic staff member to complete the follow-up assessment. The Bayer A1C Now Point of Care device only records HgA1c values up to a maximum of “>13%,” a reading that occurred for 12 program participants whose baseline A1c values were recorded, conservatively, as 13% (Four participants remained >13% at follow-up). This represents a significant limitation of the study because our data necessarily underestimated the decrease in HgA1c among these patients. Follow-up data from the survey instrument and biometric indicators were collected by the DPC, CHWs and ODIM volunteers in November 2012, 4 months after initiation of the intervention. Data were de-identified, and analysis was conducted using SPSS 19. Quantitative survey data were analyzed using the
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Table 2 Percentage Change in Health Behavior and Practice Indicators After Community Health Worker Intervention
N = 52 HgA1C (normal The primary outcome measure evaluated for this intervention was HgA1c. At baseline, patients who completed surveys and biometric assessments at baseline and 4-month follow-up (n = 52), had a mean HgA1C of 10.1%, though this value most likely would have been higher if the equipment were able to register a value higher than 13%. Patients’ T2DM was controlled with metformin, glipizide/glibenclamide, or a combination of these medications. Survey results indicated that no participants were using insulin during data collection. Barriers to insulin use in this setting include lack of access, cost, lack of refrigeration, and insufficient nursing experience in managing complications with insulin. Follow-up HgA1c evaluations were taken after 4 months, and the mean HgA1c for the sample had decreased to 8.9%, a statistically significant decrease of 1.2% (p = .001). There was no significant change in mean BMI. Results from the health beliefs and practices survey were mainly nonsignificant, which is discussed in greater detail in the limitations section. However, increases in knowledge that HgA1C levels should be > The dearth of research on T2DM and even chronic disease in this region makes comparing and contrasting this study with others like it a challenge, though a need for greater levels of T2DM education and glycemic control has been established by at least one published study with a rural, indigenous community in Guatemala
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(Chary et al., 2012). This has also been shown to be the case among nonindigenous Guatemalans (Pontaza et al., 2007). Although evaluation studies and materials related to T2DM self-management interventions with Spanish-speaking populations in the United States provided some of the foundation for this project (Gonzalez, 2009; Spencer, et al., 2011), it is difficult to compare findings and approaches given the vast differences in resources, populations involved, and cultural context. Nonetheless, it is important to note that studies such as those by DePue et al. (2013) also occurred in resourcelimited settings and produced significant reductions in HgA1C, albeit with the assistance of nurse-CHW teams. The present study is perhaps unique in that reductions were present though it was largely implemented with the leadership of CHW teams who receive ongoing training and support on core components of clinically sound T2DM self-management guidelines, an important strength, despite many limitations of this pilot study. An important strength of the program is its sustainability over time. The local DPC, CHWs, and ODIM clinic staff continue to manage the development and implementation of Caminemos Juntos. The CHWs rotate writing curriculum lessons for the weekly diabetes clubs, and the lessons are reviewed by the clinic administrator for accuracy in terms of their adherence to standards of diabetes self-management. The EGHI team members serve as consultants to the program and continue to communicate with clinic staff through e-mail. The EGHI team intends to work with CHWs and the DPC to develop a more culturally relevant and concise survey instrument to use in future evaluation of the program. In addition, the clinic continues to monitor HgA1C, providing ongoing evaluation of the program. Furthermore, an EGHI nursing team member provided continuing education classes to the CHWs during summer, 2013, in order to provide additional staff support and reinforce existing diabetes knowledge. An empowerment-based approach to this unique project was key for program success and sustainability, as CHWs were encouraged to take ownership of the program even prior to its initiation. Because of the success of the program, both anecdotally and in terms of existing evaluations, ODIM is currently in the process of expanding the diabetes program CHW model for use with other patient populations in the clinic that have expressed a desire for support and information to improve their community’s health. Limitations The challenges of implementing a diabetes selfmanagement program with an indigenous population
are perhaps as enlightening as the results of this study. Limitations specific to our study design include the necessity of using a convenience sample, a small sample size, adaptation of a survey instrument designed for a different population, surveyor bias, and language barriers. The survey instrument used in the study was designed for Latino populations in Atlanta and includes measures that seek to quantify levels of physical activity, food intake, depression, and social support scales which did not translate well to the cultural context of this community. The EGHI team made minor changes and added additional qualitative questions to adapt the tool to the cultural context; however, it was evident that much of the survey tool did not work for this population. For instance, the depression and social support scales used Likert-type scale items; however, participants are not accustomed to the idea of ranking their emotions on a scale. Therefore, CHWs had difficulty eliciting responses, especially in a verbal administration of the survey. The survey was initially designed to be read and completed in Spanish by the participant; however, as patients’ literacy levels were often severely limited, the surveys were conducted verbally in Tz’utujil by CHWs. Furthermore, as Tz’utujil is not widely read, CHWs were asked to translate each question and response. It is possible that this translation compromised the validity of the responses. The EGHI team did conduct a short training with CHWs in FGD facilitation and survey administration; however, a more comprehensive and time-intensive training should be used in the future. Surveyor bias was also evident in the health beliefs and practices survey, which could have stemmed from inadequate orientation of the CHWs to the survey. Regarding the design and implementation of the Caminemos Juntos program, the designers made every effort to understand cultural traditions about food and exercise, the roles of traditional healers and western medicine in shaping patient’s health beliefs and practices, but one can never fully understand a different culture. Conclusion Pre- and posttest analyses indicate that a culturally specific, community-led, diabetes self-management program may help to reduce blood glucose levels in rural populations in Guatemala. Results from the health beliefs and practices survey were inconclusive, which is discussed further above in the limitations section. Nonetheless, key measures of knowledge, specifically regarding recommended blood sugar and
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HgA1c values did improve significantly at follow-up. Future research of a large, randomized sample, using a survey validated for use in this population, will more effectively measure the impact of the Caminemos Juntos intervention.
International Diabetes Federation. (2012). International Diabetes Federation Diabetes Atlas. Retrieved from http://www.idf.org/ sites/default/files/5E_IDFAtlasPoster_2012_EN.pdf
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HPPXXX10.1177/1524839914557033Health Promotion PracticeMicikas et al. / Chw Intervention for Diabetes Self-Management
Diabetes Management
A Community Health Worker Intervention for Diabetes Self-Management Among the Tz’utujil Maya of Guatemala Mary Micikas, BSN, RN, MSN(c)1 Jennifer Foster, PhD, MPH, CNM1 Allison Weis, BS, MPH(c)1 Alyse Lopez-Salm, MPH, CHES2 Danielle Lungelow, MSSc3 Pedro Mendez4 Ashley Micikas, BENVD4
Despite the high prevalence of diabetes in rural Guatemala, there is little education in diabetes selfmanagement, particularly among the indigenous population. To address this need, a culturally relevant education intervention for diabetic patients was developed and implemented in two rural communities in Guatemala. An evaluative research project was designed to investigate if the structured, communityled diabetes self-management intervention improved selected health outcomes for participants. A one-group, pretest–posttest design was used to evaluate the effectiveness of the educational intervention by comparing measures of health, knowledge, and behavior in patients pre- and postintervention. A survey instrument assessed health beliefs and practices and hemoglobin A1c (HgA1c) measured blood glucose levels at baseline and 4 months post initiation of intervention (n = 52). There was a significant decrease (1.2%) in the main outcome measure, mean HgA1c from baseline (10.1%) and follow-up (8.9%; p = .001). Other survey findings were not statistically significant. This study illustrates that a culturally specific, diabetes self-management program led by community health workers may reduce HgA1c levels in rural populations of Guatemala. However, as a random sample was not feasible for this study, this finding should be interpreted
Health Promotion Practice July 2015 Vol. 16, No. (4) 601–608 DOI: 10.1177/1524839914557033 © 2014 Society for Public Health Education
with caution. Limitations unique to the setting and patient population are discussed in this article. Keywords: international/cross-cultural health; diabetes; chronic disease; health education; health promotion
Introduction >> Guatemala is a low-middle income Central American country with a population of 15.08 million (World Bank, 2013). Similar to many developing countries, Guatemala is undergoing an epidemiologic transition. While the country continues to experience many of the 1
Emory University, Atlanta, GA, USA Duke University Medical Center, Durham, NC, USA 3 Medical Anthropologist, Atlanta, GA, USA 4 Organization for the Development of the Indigenous Maya, San Juan La Laguna, Guatemala 2
Authors’ Note: Mary Micikas, Alyse Lopez-Salm, Allison Weis, and Danielle Lungelow: All received funding from the Emory Global Health Institute. They received the EGHI multidisciplinary team field scholars award for their research project during the summer of 2012. The purpose of the award is to facilitate interdisciplinary collaboration on global health issues through providing funding for students to partner with local in-country organizations to develop a research project and conduct the field work. Address correspondence to Mary Micikas, Nell Hodgson Woodruff School of Nursing, Emory University, 1520 Clifton Road NE, Atlanta, GA 30322, USA; e-mail: [email protected].
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diseases of poverty such as infection and malnutrition, Guatemala is concurrently experiencing an unprecedented growth in rates of noncommunicable disease (Chary, Greiner, Bowers, & Rohloff, 2012). Sixty percent of the population is indigenous, mainly concentrated in the western highlands of the country. There exist significant health disparities between the indigenous and the nonindigenous, or ladino, population (International Work Group for Indigenous Affairs, 2012). Data indicate that indigenous people in Guatemala have a life expectancy 13 years less than that of ladinos, and they are 2.8 times poorer than ladinos (International Work Group for Indigenous Affairs, 2012). While there is a dearth of publicly available data on the prevalence of type 2 diabetes mellitus (T2DM) in indigenous Guatemala, global, regional, and accessible Guatemalan national data indicate that diabetes prevalence necessitates intervention. The World Health Organization (2013) projects that T2DM will more than triple between 2000 and 2030. In 2012, the International Diabetes Federation (2012) reported that there are 371 million people living with diabetes in the world, and 80% of those cases are concentrated in low- and middle-income countries. In Latin America, the prevalence of T2DM is 9.2%, with 45.5% of those cases remaining undiagnosed; however, only 5% of global expenditures on diabetes are spent in this region (International Diabetes Federation, 2012). Between 2001 and 2003, diabetes rose to the 8th leading cause of mortality and became the 5th leading cause of mortality among women in Guatemala (Pan American Health Organization, 2007). The Pan American Health Organization reported that in 2007 that the prevalence in Villa Nueva, a ladino community outside Guatemala City, was 8.4%, a rate similar to that in the United States (Pontaza et al., 2007). There is even less published evidence regarding the indigenous communities in the western highlands. However, a slowly expanding body of literature and clinical reports suggests that diabetes education and treatment are needed among these communities (Chary et al., 2012). Health organization record reviews and community assessments reflect these local, national, and global findings regarding the increasing T2DM disease burden. The Organization for the Development of the Indigenous Maya (ODIM), the host organization and site for our diabetes intervention, conducted a health needs assessment in the villages of San Juan and San Pablo La Laguna, Sololá between 2009 and 2010. Of the 568 individuals surveyed, 38% identified diabetes as their top health concerned (ODIM staff, personal communication, December 17, 2011). The needs assessment also highlighted residents’ strong desire for health
services conducted in their native language (Tz’utujil) by individuals from their own community. This desire is consistent with much of the literature concerning community health interventions as an essential component of chronic disease management (Boothroyd & Fisher, 2010; Castillo et al., 2010; Fisher et al., 2012; Philis-Tsimikas, Fortmann, Lleva-Ocana, Walker, & Gallo, 2011; Spencer et al., 2011). Community Health Workers ODIM’s needs assessment indicated that the desires of the citizens of San Juan and San Pablo are well aligned with the global trend in which communities prefer chronic disease management inclusive of community-based primary health care, embedded in an empowerment framework (Fawcett et al., 1995; Laverack, 2006). Peer health education for chronic disease management has been shown to improve health outcomes in low resource populations both in the United States (Boothroyd & Fisher, 2010) and internationally, specifically in Cameroon, South Africa, Thailand, Uganda (Fisher et al., 2012), and American Samoa (DePue et al., 2013). In a randomized control trial using the Racial and Ethnic Approaches to Community Health model of community health promoter diabetes management among African American and Latino populations in Detroit, patients’ hemoglobin A1c tests (HgA1c) decreased from 8.4% to 7.5% (p < .01) during the 6-month intervention and selfreported health behaviors improved (Spencer et al., 2011). Another study conducted in American Samoa found that a community health worker (CHW)—nurse diabetes care team improved patient education and self-management (DePue et al., 2013). The World Health Organization’s report on CHWs concluded that CHW programs are effective when they have a well-defined framework, are “driven, owned and embedded in the community,” and are implemented by small-scale nongovernmental organizations. Other crucial program components include specialized, ongoing trainings and financial sustainability (Lehman & Sanders, 2007). The ODIM clinic’s prior CHW program faced challenges, including strain on staff and volunteers due to their many roles and responsibilities, lack of a well-developed and evaluated framework for the project, and insufficient specialized training in diabetes management and prevention. To address these challenges, and the community’s desire for improved diabetes care, a diabetes self-management intervention was developed by a team of ODIM clinic staff, CHWs and four students sponsored by the Emory University Global Health Institute (EGHI).
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The team’s goal was to overcome the limitations of previous CHW initiatives in order to improve the education, support, and ultimately the health and quality of life of diabetic patients in the clinic’s service area.
Background >> To address the growing prevalence of T2DM in two rural Guatemalan communities, and the lack of access to diabetes treatment, education, and prevention, the EGHI team designed a culturally relevant diabetes selfmanagement intervention, Caminemos Juntos (Let’s Walk Together). Participants of the intervention were diabetic patients receiving treatment at ODIM’s rural primary care clinic in the villages of San Juan and San Pablo La Laguna, Sololá in the western highlands of Guatemala, over a 4-month period in 2012. Of note, the program is ongoing at the time of this article’s publication. The two communities have a combined population of about 14,000, of which nearly 100% identify themselves as Tz’utujil Maya, with Tz’utujil as the primary language (Guatemala National Institute of Statistics, 2011). In addition, many of the elderly, women, and young children speak Tz’utujil exclusively. Each community has a Centro de Salud (health center) operated by the national Ministry of Health (MoH). Health care access in general, and specifically for diabetic treatment, varies widely in these communities. Although there is a MoH center that is open 24 hours a day; health center staff are aware that diabetes treatment resources may be insufficient (ODIM staff, personal communication, December 17, 2011). There are a number of private physicians, various nongovernmental organization clinics, and an increasing number of pharmacies where many patients receive consultations and medications. Availability of diabetes treatment through these facilities is dependent on patient resources including transportation, time, and finances. ODIM, as with some other facilities in the area, attempts to mitigate these challenges. ODIM’s methods to promote health care access include financially subsidized services and some transportation assistance. The clinic has more than 5,000 patient visits per year and provides primary care consultations and medications for the equivalent of US$1.33. Consultations for patients with diabetes include, at minimum, a monthly appointment with a local nurse and/or physician and measurement of vital signs, BMI (body mass index), blood pressure, and blood glucose, HgA1C tests every 4 to 6 months, oral medications, and referrals for complicated cases. Though we did not find published local statistics, most health care professionals agree that the prevalence of T2DM has risen significantly
over the past couple of decades, as a result of lifestyle and dietary changes (ODIM staff, personal communication, December 17, 2011). For instance, stores selling chips, candy, and sodas are ubiquitous, and most community members now travel by taxi instead of walking. In 2012, over 150 patients received at least one consult for treatment of T2DM in the ODIM clinic. This presence of low-cost processed food, not previously accessible in these towns, in addition to barriers to accessing diabetes information and quality, affordable care, present significant challenges to diabetes prevention and treatment for ODIM’s clinic patients. Purpose and Specific Aims During the summer of 2012, a multidisciplinary team of four graduate students from Emory University, representing three different schools (Nursing, Public Health, Medicine) as well as varying backgrounds (education, anthropology, research, advocacy) was invited by ODIM to spend 3 months working with the clinic to help meet the diabetic health needs expressed by community members. One purpose of the study was to train CHWs and work with ODIM’s newly designated diabetes program coordinator (DPC) to design and implement a culturally appropriate intervention for diabetes self-management. The lead author worked at the ODIM clinic for over 3 years, and prior to the project had already established strong rapport with the community and CHWs, as well as familiarity with the need for improved diabetes management and education. Informed by focus group discussions (FGDs) with diabetic patients, key informants from the community, and CHWs, the EGHI team designed, implemented, and evaluated a diabetes self-management curriculum and intervention. CHWs were called on to use their knowledge, skills, and experience to promote diabetes self-management in their own communities, functioning as an extension of the health services provided at the ODIM clinics. The team sought to determine if a structured, community-led diabetes self-management intervention could be implemented successfully and whether the intervention could improve selected health outcomes for diabetic patients. The evaluation strategy included observing changes in HgA1c, BMI, and health beliefs and practices among participating diabetic patients receiving treatment at the ODIM clinic.
Method >>
Intervention Overview The EGHI team worked closely with CHWs and ODIM’s DPC to conduct formative research in the
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development of a culturally appropriate intervention for diabetes self-management. As part of this formative research, the team worked with CHWs to conduct two FGDs with diabetic patients, one in San Juan and one in San Pablo. Inspired by findings that indicated that a strong desire for social support in managing one’s diabetes, local staff and the EGHI team named the program Caminemos Juntos (Let’s Walk Together), to highlight two important aspects of diabetes self-management: physical activity and social support. We also referenced various curricula, including the Emory Latino Diabetes Education Program (ELDEP) currently in use in Atlanta (Gonzalez, 2009). Twenty-one CHWs participated in 1 week of daily “train-the-trainer” sessions developed by the EGHI team. This training focused on the diabetes disease process and principles of management. The EGHI team, DPC, and other ODIM staff selected eight of the trained CHWs to work as paid diabetes health promoters through an application and interview process that involved a written evaluation based on training content, observation of each candidate’s instructional style, and feedback from the DPC, who is a trusted community leader with extensive experience in guiding other local staff in health education program implementation. The selected CHWs participated in an additional week of training focused on principles of health education, motivational interviewing, and health behavior theory, in particular, the States of Change model. In addition, we presented FGD themes and engaged CHWs in analysis and discussion of the data (Figure 1). Each CHW then received a caseload of 15 to 20 patients with whom they hold a weekly diabetes club meeting consisting of a focused lesson about a specific aspect of T2DM self-management. Example topics include medication adherence, the importance of knowing one’s blood glucose, proper foot care, portion control, mental–emotional health, and creative ways to make local cuisine more diabetes-friendly. Sessions also included dedicated time for group exercises that consisted of chair exercises, group walking, and relay races. Finally, sessions focused on providing patients with emotional support to deal with the stigma and sadness expressed by many patients who participated in initial FGDs. CHWs also conduct weekly home visits and preconsults in the clinic. The preconsults provide an opportunity for the CHWs to monitor each patient’s progress and engage in empowerment-based support strategies by creating a space to discuss specific challenges, create goals, and tailor individualized exercise and nutrition plans. The EGHI team developed curriculum modules for club meetings for the first 7 months of the program.
Advocacy Home visits/Navigaon Medicaon adherence and accompanyment
CHW preconsults Clinic/Homes Monthly clinic check-ups with CHW and nurse
Educa on Diabetes Club Mini-lessons, exercise, cooking classes, support
Figure 1 Venn Diagram of the Three Elements of the Community Health Worker (CHW) Intervention
This curriculum was informed not only by the findings of the FGDs but also the theoretical assumptions of the Stages of Change Theory and the Health Belief Model (Becker, 1974; Johnson et al., 2008; Prochaska & DiClemente, 1984). Core messages included participant empowerment to make progressive, life-long changes toward a healthy, fulfilling life with T2DM in order to challenge pervasive themes of despair and a sense of fatalism around diabetes diagnoses that surfaced during the analysis of focus group interviews. At 7-months postintervention initiation, CHWs began to develop their own curriculum. This was a purposeful transition in keeping with the empowerment and capacity-building foundation on which this project was designed. Study Design Two FGDs with diabetic participants in the study were conducted preintervention initiation, and four FGDs were conducted at 4 months after initiation of the intervention. FGDs conducted prior to program initiation helped inform the design of the curriculum and program through the assessment of diabetic patients’ current knowledge and past experiences with the disease, as well as their opinions of what could assist them in managing their disease. Follow-up FGDs contributed to the evaluation of the program and elicited patients’ experiences in the program.
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The evaluation component, designed to measure the effectiveness of the intervention, was conducted through a one group, pretest–posttest design. A convenience sample of 120 diabetic patients receiving treatment for T2DM at the ODIM clinic was recruited. Recruitment was conducted through a chart review by members of the EGHI and the DPC. Patients were contacted by the DPC and invited to participate in the study (in Tz’utujil) by phone or home visits. Patients were told their decision was completely voluntary. A Spanish language consent form had been developed as part of the university institutional review board application process. The institutional review board ruled this study exempt because they assessed the project to be program evaluation. Nevertheless, the team followed the ethical guidelines for research with illiterate populations (Nuffield Council on Bioethics, 2002) and obtained verbal consent. Inclusion criteria were as follows: potential participants must be over the age of 18 and a patient of the ODIM clinic with at least one consult in the past year and must have a diagnosis of T2DM. All patients receiving care for T2DM at the ODIM clinic in the year preceding the study were included in recruitment if they met the inclusion criteria. Prediabetic patients were excluded from the study evaluation, although they still could participate in the program. Thus, using the American Diabetes Association diagnostic criteria, patients with an HgA1C below 6.5 and who were not taking medicine for T2DM (metformin, glipizide, glibenclamide, or insulin) were excluded from the study, as a diagnosis of T2DM could not be confirmed (American Diabetic Association, 2013). It should be noted that 11 of these patients, for whom EGHI could not confirm a diagnosis, were allowed to participate in the Caminemos Juntos program, stating that they liked being part of the group and wanted to avoid developing T2DM. A total of 104 patients met inclusion requirements and completed the initial survey and biometric assessments. Fifty-two patients participated in both the preand posttest surveys (Table 1). However, an additional 50 patients who joined the Caminemos Juntos program after the baseline survey, contributed to the follow-up survey. Their data were excluded in the pretest–posttest analysis but will be used for future program evaluation. A pretest–posttest survey instrument used to measure diabetic self-management was adapted with permission from the ELDEP for the specific culture and context of rural Guatemalan communities (Gonzalez, 2009). At the time of the study, the ELDEP survey was undergoing reliability and validity testing. However, the survey was not pilot tested with this particular
Table 1 Participants in the Caminemos Juntos Diabetes Club Demographics Town San Juan San Pablo Gender Female Male Employment Unemployed (housewife) Employed (artisan, construction, agriculture)
% of Participants 46 54 91 9 60 40
population prior to administration due to project time constraints. This 42-item survey contains both closedand open-ended items designed to assess health beliefs and practices related to diabetes, exercise, nutrition, and social support. Social support was measured using the Duke-UNC Functional Social Support Scale (Cronbach’s alpha for this scale ranges from .81 to .92) Sample items included, “I have people who care what happens to me.” and “I get invitations to go out and do things with other people.” (Broadhead, Gehlbach, de Gruy, & Kaplan, 1988). EGHI team members trained CHWs in conducting FGDs and administering surveys. Surveys were written in Spanish but were administered orally to patients by the bilingual CHWs in Tz’utujil, as the majority of the population is illiterate, and many do not speak Spanish. HgA1c (Bayer A1C Now Point of Care cartridges), blood pressure, height and weight were collected by EGHI team nursing students, who trained a clinic staff member to complete the follow-up assessment. The Bayer A1C Now Point of Care device only records HgA1c values up to a maximum of “>13%,” a reading that occurred for 12 program participants whose baseline A1c values were recorded, conservatively, as 13% (Four participants remained >13% at follow-up). This represents a significant limitation of the study because our data necessarily underestimated the decrease in HgA1c among these patients. Follow-up data from the survey instrument and biometric indicators were collected by the DPC, CHWs and ODIM volunteers in November 2012, 4 months after initiation of the intervention. Data were de-identified, and analysis was conducted using SPSS 19. Quantitative survey data were analyzed using the
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Table 2 Percentage Change in Health Behavior and Practice Indicators After Community Health Worker Intervention
N = 52 HgA1C (normal The primary outcome measure evaluated for this intervention was HgA1c. At baseline, patients who completed surveys and biometric assessments at baseline and 4-month follow-up (n = 52), had a mean HgA1C of 10.1%, though this value most likely would have been higher if the equipment were able to register a value higher than 13%. Patients’ T2DM was controlled with metformin, glipizide/glibenclamide, or a combination of these medications. Survey results indicated that no participants were using insulin during data collection. Barriers to insulin use in this setting include lack of access, cost, lack of refrigeration, and insufficient nursing experience in managing complications with insulin. Follow-up HgA1c evaluations were taken after 4 months, and the mean HgA1c for the sample had decreased to 8.9%, a statistically significant decrease of 1.2% (p = .001). There was no significant change in mean BMI. Results from the health beliefs and practices survey were mainly nonsignificant, which is discussed in greater detail in the limitations section. However, increases in knowledge that HgA1C levels should be > The dearth of research on T2DM and even chronic disease in this region makes comparing and contrasting this study with others like it a challenge, though a need for greater levels of T2DM education and glycemic control has been established by at least one published study with a rural, indigenous community in Guatemala
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(Chary et al., 2012). This has also been shown to be the case among nonindigenous Guatemalans (Pontaza et al., 2007). Although evaluation studies and materials related to T2DM self-management interventions with Spanish-speaking populations in the United States provided some of the foundation for this project (Gonzalez, 2009; Spencer, et al., 2011), it is difficult to compare findings and approaches given the vast differences in resources, populations involved, and cultural context. Nonetheless, it is important to note that studies such as those by DePue et al. (2013) also occurred in resourcelimited settings and produced significant reductions in HgA1C, albeit with the assistance of nurse-CHW teams. The present study is perhaps unique in that reductions were present though it was largely implemented with the leadership of CHW teams who receive ongoing training and support on core components of clinically sound T2DM self-management guidelines, an important strength, despite many limitations of this pilot study. An important strength of the program is its sustainability over time. The local DPC, CHWs, and ODIM clinic staff continue to manage the development and implementation of Caminemos Juntos. The CHWs rotate writing curriculum lessons for the weekly diabetes clubs, and the lessons are reviewed by the clinic administrator for accuracy in terms of their adherence to standards of diabetes self-management. The EGHI team members serve as consultants to the program and continue to communicate with clinic staff through e-mail. The EGHI team intends to work with CHWs and the DPC to develop a more culturally relevant and concise survey instrument to use in future evaluation of the program. In addition, the clinic continues to monitor HgA1C, providing ongoing evaluation of the program. Furthermore, an EGHI nursing team member provided continuing education classes to the CHWs during summer, 2013, in order to provide additional staff support and reinforce existing diabetes knowledge. An empowerment-based approach to this unique project was key for program success and sustainability, as CHWs were encouraged to take ownership of the program even prior to its initiation. Because of the success of the program, both anecdotally and in terms of existing evaluations, ODIM is currently in the process of expanding the diabetes program CHW model for use with other patient populations in the clinic that have expressed a desire for support and information to improve their community’s health. Limitations The challenges of implementing a diabetes selfmanagement program with an indigenous population
are perhaps as enlightening as the results of this study. Limitations specific to our study design include the necessity of using a convenience sample, a small sample size, adaptation of a survey instrument designed for a different population, surveyor bias, and language barriers. The survey instrument used in the study was designed for Latino populations in Atlanta and includes measures that seek to quantify levels of physical activity, food intake, depression, and social support scales which did not translate well to the cultural context of this community. The EGHI team made minor changes and added additional qualitative questions to adapt the tool to the cultural context; however, it was evident that much of the survey tool did not work for this population. For instance, the depression and social support scales used Likert-type scale items; however, participants are not accustomed to the idea of ranking their emotions on a scale. Therefore, CHWs had difficulty eliciting responses, especially in a verbal administration of the survey. The survey was initially designed to be read and completed in Spanish by the participant; however, as patients’ literacy levels were often severely limited, the surveys were conducted verbally in Tz’utujil by CHWs. Furthermore, as Tz’utujil is not widely read, CHWs were asked to translate each question and response. It is possible that this translation compromised the validity of the responses. The EGHI team did conduct a short training with CHWs in FGD facilitation and survey administration; however, a more comprehensive and time-intensive training should be used in the future. Surveyor bias was also evident in the health beliefs and practices survey, which could have stemmed from inadequate orientation of the CHWs to the survey. Regarding the design and implementation of the Caminemos Juntos program, the designers made every effort to understand cultural traditions about food and exercise, the roles of traditional healers and western medicine in shaping patient’s health beliefs and practices, but one can never fully understand a different culture. Conclusion Pre- and posttest analyses indicate that a culturally specific, community-led, diabetes self-management program may help to reduce blood glucose levels in rural populations in Guatemala. Results from the health beliefs and practices survey were inconclusive, which is discussed further above in the limitations section. Nonetheless, key measures of knowledge, specifically regarding recommended blood sugar and
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HgA1c values did improve significantly at follow-up. Future research of a large, randomized sample, using a survey validated for use in this population, will more effectively measure the impact of the Caminemos Juntos intervention.
International Diabetes Federation. (2012). International Diabetes Federation Diabetes Atlas. Retrieved from http://www.idf.org/ sites/default/files/5E_IDFAtlasPoster_2012_EN.pdf
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