Native
American Diabetes Project |
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Disclaimer This example is derived from the first "Strong in Body and Spirit!" program developed for eight Rio Grande Pueblo Nations in New Mexico and now being diffused in other diabetes programs across the country. Please see the references at the end of the example for articles based on the program. Additionally, please see these links to the "Strong in Body and Spirit!" program curriculum elements:
The development and evaluation processes that the "Strong in Body and Spirit!" team engaged in were modified and fictionalized in many of the steps below to conform to the planning process set forth in CDCynergy 3.0. This example originally appeared in CDCynergy Diabetes Edition. |
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Step 1.1 Write a problem statement. |
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Diabetes was rare among Native people of North America prior to the first half of the century. Since that time, however, it has become one of the most common and serious illnesses affecting many of the 560 federally recognized nations of American Indians and Alaska Natives (AI/AN). The CDC reported in 1998 that the age-adjusted prevalence rate of diagnosed diabetes among AI/AN people over age 20 is almost three times (10.9%) that for non-Hispanic whites (3.9%). Prevalence rates vary by tribal group, rising to 15.9% among the Plains tribes (CDC, 1998). Indian Health Service (IHS) studies show that between 1991-1997, the prevalence of diabetes increased in all major regions served by the agency between 17-80 percent (Indian Health Service Interium Report to Congress, 2000). Type 2 diabetes has become more common in younger population groups. In a study from 1991 to 1997, the prevalence of diabetes in American Indian/Alaska Native adolescents 15 to 19 years increased by 32 percent, those 20-24 years increased by 36 percent, and those ages 25-34 increased by 28 percent (IHS Report to Congress, 2000). Diabetes is the leading cause of end-stage renal disease (ESRD), lower extremity amputations, and new cases of blindness among adults aged 20-74 years. Persons with diabetes have 2 to 4 times the risk of having a heart attack or stroke compared with those without diabetes. They are three times more likely to die of complications from influenza (flu) and pneumonia than are persons without diabetes and they spend about 24 million days in the hospital annually. For AI/AN people, ESRD is six times greater than non-Hispanic whites and rates of diabetic retinopathy are between 14 and 49.3 percent (National Diabetes Information Clearinghouse statistics, 1999). Additionally, rates of lower extremity amputations, foot ulcers, loss of foot sensory perception, diabetes-related periodontal disease, and infections are higher for American Indians than those for the US population. Actual death rates are estimated to be 4.3 times higher for AI/AN people (IHS Report to Congress, 2000). For additional information on diabetes in American Indians and Alaska Natives, see:
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Step 1.2 Assess the problem's relevance to your program. |
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The University of New Mexico Native American Diabetes Project (NADP) is an educational program designed to support Native peoples as they strive to make healthy lifestyle choices to be strong in body and spirit. The goal of this project is to develop a partnership approach to a community lifestyle intervention tailored for and by Pueblo communities. The "Strong in Body and Spirit!" program honors the strengths of American Indian communities, including values such as family, community, and storytelling for teaching about living a healthy life with diabetes (Carter et al., 1997). The project is based on 12 years of work with Rio Grande Pueblo people with diabetes, their families, and their communities. It represents a joint effort involving community members, tribal leaders, and Indian Health Service (IHS) staff of the communities. Many persons from the participating communities contributed greatly to this project. Funding for the project was provided by a four-year grant from the National Institutes of Health (NIH) with the charge of helping Native peoples to be "Strong in Body and Spirit". |
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Step 1.3 Explore who should be on the planning team and how team members will interact. |
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NIH funded core staff to generate the planning process and implementation of "Strong in Body and Spirit!". Staff included:
Staff persons led the development of "Strong in Body and Spirit!," including curriculum preparation, data collection, and evaluation. The inclusion of culturally-relevant information in program development was a priority from the start, so "Strong in Body and Spirit!" actively involved members of the target communities in all aspects of planning and implementation. The team of the NADP created a shared code of ethics to "incorporate continuous quality improvement in a proactive, open, forthright, and fun manner with the following values: respect, trust, compassion, honesty, cooperation, tolerance, and partnership." In addition, the program planners pledged "to work together to use their time and resources wisely and to bring gratitude, simplicity, order, harmony, beauty and joy to those we work with and those we work for." |
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Step 1.4 Examine and/or conduct necessary research to describe the problem. |
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The reasons for increased rates of diabetes among Native peoples are numerous and diverse and include the effects of Westernization and rapid ecological changes. Following World War II and the spread of industrialization, dietary changes occurred when traditional foods that were high in protein, vitamins, and mineral content were no longer available or consumed. The government commodities program that served as a relief effort on reservations supplied large quantities of bleached flour, pinto beans, fatty meats, processed sugar, lard, and powered milk, subsequently adding to the change in dietary behavior (Hill, 1997). Simple sugars replaced complex carbohydrates, fat intake increased dramatically, and protein consumption decreased for many American Indians as convenience foods were steadily introduced. Except for a few isolated Arctic groups whose lifestyles have changed less dramatically, the recent shift from a traditional Native to a Western lifestyle has brought motorized transportation, a sedentary lifestyle, and increased consumption of processed foods high in sugar and fat to many tribal communities. These changes have contributed to increased weight gain and reduced physical activity, setting the stage for a striking shift in the incidence and prevalence of diabetes among American Indians (Carter et al., 1997). Additional complications arise because many people are unaware that they have the disease, given that it can be present with few symptoms. It is estimated that one out of three American Indians has diabetes but has not been diagnosed. Undiagnosed, diabetes can lead to serious complications over time, because high blood glucose levels damage major organs including the heart and kidneys, blood vessels, and nerves. In New Mexico, 1 out of 3 Native people have type 2 diabetes and associated mortality is high; one study found diabetes death rates that are 3.6 times those for whites (Gilliland et al., 1998; Gohdes, 1995). Over a 30-year period, death rates in New Mexico indigenous peoples have increased by 550 percent in women and 249 percent in men, with a high incidence of complications, including ESRD and diabetic retinopathy. "Strong in Body and Spirit!" was launched to target diabetes-related disparities in the New Mexico Rio Grande Pueblo communities by focusing on the strengths and culture of the people to promote lifestyle changes that are consistent with their history and culture. |
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Step 1.5 Determine and describe distinct subgroups affected by the problem. |
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Community-wide activities (e.g., focus groups, interviews, and meetings) identified that the audience to reach was adult men and women from eight Rio Grande Pueblo communities in New Mexico. People of these communities speak the Tanoan language and share similar cultural and religious backgrounds (Carter et al., 1997). Although type 2 diabetes also is increasing in younger generations, adults comprised the primary target audience of "Strong in Body and Spirit!," because prevalence and comorbidity severity increases with age. Because "Strong in Body and Spirit!" was community-based, family and friends who provide support (physical, mental, spiritual, and emotional) for persons with diabetes was noted as an additional subgroup for the intervention. |
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Step 1.6 Write a problem statement for each subgroup you plan to consider further. |
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Primary Audience
Secondary Audience
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Step 1.7 Gather information necessary to describe each subproblem defined in new problem statement. |
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Primary Audience: Diabetes registry information provided data on persons with diabetes from three IHS health centers serving the eight Rio Grande Pueblo communities (Carter, 1993; Griffin et al., 1999):
Questionnaires were given to assess food consumption and exercise: Eating Habits:
Physical Activity:
From these baseline measures, team members concluded that there was a need to address lifestyle behaviors in these communities. A changeability table can help program planners to ponder the changeability and importance of different lifestyle elements and other factors related to diabetes complications for the Rio Grande Pueblo communities. Secondary Audience: The program planners realized that making changes to help support healthy choices for people with diabetes would also help the secondary audience make healthier choices themselves. When people are surrounded by and supported by key persons (e.g., family members, friends) who also are choosing healthier ways, it can have a positive influence that serves to reinforce their actions. |
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Step 1.8 Assess factors and variables that can affect the project's direction. |
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Step 2.1 List the direct and indirect causes of each subproblem that may require intervention(s). |
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Step 2.2 Prioritize and select subproblems that need intervention(s). |
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Community-wide activities (e.g., focus groups, meetings, and interviews) with the target audience and other community members reinforced the importance of grounding the program in traditional values of the Rio Grande Pueblo people (Carter et al., 1997), including:
These values became the main themes for the "Strong in Body and Spirit!" curriculum. |
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Step 2.3 Write goals for each subproblem. |
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Based on the subproblems listed above, "Strong in Body and Spirit!" targeted the goals to reduce complications from diabetes in Rio Grande Pueblo adults. Goals to promote healthy lifestyle behaviors could be stated as:
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Step 2.4 Examine relevant theories and best practices for potential intervention(s). |
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With a plan to highlight existing traditional values and teaching channels, Health Communication and Education was the main intervention strategy. Stories serve to communicate cultural wisdom and assist people in achieving wellness and harmony. Storytelling provided a strong framework for supporting traditional ways of good nutrition, exercise, and family and community support. Intervention strategies for Health Communication and Education could include:
Other approaches to be considered for interventions include Health Policy/Enforcement (e.g., giving tribal members time off during the workday to exercise), Health Engineering (e.g., creating safer, age-appropriate equipment to encourage physical activity and reduce injuries) and Health-Related Community Services (e.g., community health workers starting support groups). |
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Step 2.5 Consider SWOT and ethics of intervention options. |
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Focusing on the strengths of communities and the traditional knowledge about health promotion, helped the "Strong in Body and Spirit!" team maintain strong ties with community members and avoid problems in the design. In addition, it is important to identify the strengths, weaknesses, opportunities and threats (SWOT) of using Health Communication and Education strategies: SWOT of Health Communication/Education intervention strategies: Strengths
Weaknesses
Opportunities
Threats
What ethical considerations were considered for this strategy?
What aspects were strengthened within the team to carry out this activity?
Summarize the needs of the intervention:
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Step 2.6 For each subproblem, select the intervention(s) you plan to use. |
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Social Action Theory, Social Cognitive Theory and the Transtheoretical Model (Stages of Change) were used in the creation of "Strong in Body and Spirit!" Literature shows that these theories can be useful for addressing the many environmental factors that influence behavior. A logic model was created to show how these theories could shape the "Strong in Body and Spirit!" curriculum |
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Step 2.7 Explore additional resources and new partners. |
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To provide culturally relevant content and delivery methods, staff determined the importance of utilizing the expertise of the Rio Grande Pueblo communities and other agencies in the area. People who engaged in helping to develop the program curriculum through community-wide activities (e.g., meetings, focus groups, interviews and collaborative efforts) included:
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Step 2.8 Acquire funding and solidify partnerships. |
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From the initial phases of the program, a relationship of trust was established between the principal investigator and the informal and formal leaders of the communities. The "Strong in Body and Spirit!" team included community members and they highly valued the input from the communities in all aspects of decision making. Frequent meetings ensured that the "Strong in Body and Spirit!" partners kept open communication channels throughout the planning phase as a means of encouraging feedback and suggestions. Additionally, the community-wide activities allowed a respectful process of solidifying partnerships through which the communities and researchers "listen(ed) to each other with clean, clear ears" (CDC, 1997) to develop a vision of hope for the future for reducing diabetes complications (Gilliland, et al., 1998, Recommendations). The funding for the project by the NIH provided grant compensation for four years of "Strong in Body and Spirit!" programs. Later, as the program became known even outside of New Mexico, new partners joined efforts to diffuse the messages and the model of this culturally based program. |
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Step 3.1 For each subproblem, determine if intervention is dominant or supportive. |
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Consistent with the values and teaching strategies among Rio Grande Pueblo people, communication was used as the primary intervention focus for "Strong in Body and Spirit!" Health communication/education addressed healthy behavior change within the primary audience of persons with diabetes, and promoted healthy lifestyle behaviors at a community level.
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Step 3.2 Determine whether potential audiences contain any subgroups (audience segments). |
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Traditional values, such as the importance of families and the strength of communities, provided a foundation to address the Rio Grande Pueblo communities without the need to segment into certain groups. |
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Step 3.3 Finalize intended audiences. |
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Despite the emphasis on the primary audience population, "Strong in Body and Spirit!" also engaged friends and family members of participants in the activities by stressing the importance of healthy lifestyle behaviors for everyone. |
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Step 3.4 Write communication goals for each audience segment. |
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The communication goals of "Strong in Body and Spirit!" may have included:
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Step 3.5 Examine and decide on communication-relevant theories and models. |
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Theoretical elements, along with community-appropriate aspects provided the backbone for developing the program within the context of Rio Grande Pueblo culture. Social Cognitive Theory suggests many intervention strategies to facilitate behavior change within the context of Native culture and along with Social Action Theory and the Transtheoretical Model, provided the foundation for "Strong in Body and Spirit!" (Gilliland et al., 1998, Recommendations). For more information on communication-relevant theories, see Communication_Relevant_Theories.pdf and Theory_at_a_Glance.pdf. The Transtheoretical Model was useful in tailoring "Strong in Body and Spirit!" by recognizing that readiness to change influences an individual's likelihood to adopt healthy behaviors or avoid harmful practices. There are six stages which help to identify where a person is regarding the change of their behavior: precontemplation, contemplation, preparation, action, maintenance or termination stage. Most Rio Grande Pueblo people identified themselves as being in the preparation or action stage for both exercise and dietary behaviors. Many were engaging in some forms of exercise (e.g., walking and gardening). In addition, initial data found that people appreciated the importance of eating a low-fat, low-sugar diet, but needed the skills to translate this knowledge into long-term behavior change. Social Action Theory (SAT) reinforces the critical element of involving community members in the planning and implementation of programs. It can help clarify relationships between social and personal empowerment and helps explain stages of change. SAT targets multiple areas for intervention: environmental, cognitive, and behavioral. Six areas are deemed important for behavior change: problem solving, motivation, self-efficacy, self-evaluation, social interaction, and contextual influences. Social Cognitive Theory can be used to describe and explain human behavior and the human learning process and provides a framework in which cognitive, environmental, and behavioral factors interact. Key constructs include environment, situation, expectancies, self-control, observational learning, reinforcements, self-efficacy, and emotional coping responses. This theory has been used by a number of program planners working with American Indian and Alaska Native communities. It is valued for the joint activity it brings to bear on the problem -- basing development on many people's experience and wisdom and encouraging community and agencies' support for the intervention (Gilliland, et al., 1998). |
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Step 3.6 Undertake formative research. |
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Community-wide activities resulted in rich data to support the curriculum development. Formative planning efforts included these aspects of community needs assessment (Carter et al., 1997):
As previously mentioned, baseline data gathered from the diabetes registry documented participants' clinical measures (e.g., A1c level, weight) before the onset of the intervention. Interviews and questionnaires determined their stage of change for exercise and dietary behavior. |
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Step 3.7 Write profiles for each audience segment. |
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People of the Rio Grande Pueblos speak the Tanoan language group and have similar cultural and religious backgrounds. As with other Native groups, food is a large part of traditional cultural practices and serves as the centerpiece for most celebrations. In addition, Native peoples may have different learning styles that can affect the relevance and their acceptance of diabetes interventions (Carter et al., 1997). Primary Target Audience: Rio Grande Pueblo persons with diabetes do have knowledge of fat and sugar content in foods, and most identified themselves as being either in the preparation or action stages of change for both diet and exercise. Exercise is noted as important to people in the Rio Grande communities, with walking being one of the most common activities for men and women of all ages. Many Rio Grande Pueblo people are concerned with preserving their strong and healthy traditional/tribal values. Storytelling helps to maintain tradition and shape views through values from generation to generation. Formative research indicated that community members thought a group setting would be the most appropriate for the intervention, but because some expressed discomfort about attending a group meeting, individual support was also provided. Secondary Target Audience: Family and community are important values for Rio Grande Pueblo people. "Strong in Body and Spirit!" hoped that family and community would help support the target population in the following ways:
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Step 3.8 Rewrite goals as measurable communication objectives. |
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Objectives for "Strong in Body and Spirit!" could be stated as: Goal: To increase awareness in the overall Rio Grande Pueblo communities that increasing exercise and decreasing fat and sugar in their diets is good for everyone and may help prevent diabetes and diabetes complications. Objectives:
Goal: To increase physical activity in the target population by suggesting exercises that are fun and good for everyone and that build on the activities that are already a part of Rio Grande Pueblo lifestyle. Objectives:
Goal: To increase awareness in the target population about foods that are low in fat and sugar but still taste good. Objectives:
Goal: To improve glucose control in the target population as reflected by improved A1c levels.
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Step 3.9 Write creative briefs. |
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Target audience: Rio Grande Pueblo people with diabetes over the age of 18. Objectives: Overall program goal: To encourage people to make lifestyle changes to reduce complications related to their diabetes. Goal: To increase awareness in the overall Rio Grande Pueblo communities that increasing exercise and decreasing fat and sugar in their diets is good for everyone and may help prevent diabetes and diabetes complications. Objectives:
Goal: To increase physical activity in the target population by suggesting exercises that are fun and good for everyone and that build on the activities that are already a part of Rio Grande Pueblo lifestyle. Objectives:
Goal: To increase awareness in the target population about foods that are low in fat and sugar but still taste good. Objectives:
Goal: To improve glucose control in the target population as reflected by improved A1c levels.
Key promise of "Strong in Body and Spirit!": Healthy lifestyle changes can help prevent or delay the onset of complications and help keep one "Strong in Body and Spirit!" Support statements/Reasons why: Healthy lifestyle habits will help people to:
These activities can help individuals maintain a blood glucose that is closer to normal, preventing complications of diabetes (e.g., ESRD, oral health problems, lower extremity amputations, and new cases of blindness). Promoting healthy actions in the entire community helps support people with diabetes and prevent diabetes from developing among others. In order to create a program that would effectively promote healthy lifestyle behaviors, "Strong in Body and Spirit!" employed three overarching goals in their program development:
These goals allowed the communities and program planners to work together to change the image of diabetes from one of hopelessness and to create a new, positive vision of hope for the future (Carter et al., 1999). Tone: Program planners realized the importance of presenting information in a nonjudgmental way. Stories served to provide an indirect, nonthreatening way to communicate a hopeful vision and open doors for shared storytelling, support and problem solving (Carter et al., 1997). In addition, a code of ethics allowed the communities and planning team to use strength and courage in working together to achieve the shared mission of improving the lives of Native people. The Native American Diabetes Project (NADP) code of ethics is:
Media:
The people of the Rio Grande Pueblo communities have many strengths, skills, and values consistent with health promotion and disease prevention. These should be honored and reinforced. Told in both the Tanoan language and in English, stories are used to pass on traditional values and give voice to collective wisdom or concerns. Food is a large part of traditional cultural practices, including feasts and celebrations. Native peoples may have different learning styles that can affect the relevance and acceptance of diabetes instruction (Carter et al., 1997). Addressing their needs in a culturally relevant fashion and using an encouraging, positive approach is vital to getting them to embrace healthy ways of life to control their diabetes. Rio Grande Pueblo people with diabetes do have knowledge of fat and sugar content in foods, and most identified themselves as being either in the preparation or action stages of change for both diet and exercise. This group wished for an intervention that stressed traditional values and beliefs and contained activities such as serving food, sharing recipes, and taste-testing. Formative research indicated that community members thought a group setting would be the most appropriate for the intervention. Some, however, expressed discomfort with attending a group meeting, so individual support also was provided. Additionally, because of the importance of family and community to Rio Grande Pueblo people, finding ways to increase these support structures was important. Environmental and situational considerations engendered into the "Strong in Body and Spirit!" curriculum included a non-threatening, non-clinical setting to facilitate the participants' comfort, storytelling and prayers, non-food rewards and participant recognition to encourage participation. Using non-food rewards as incentives was a way to improve attendance and calendars and other methods were developed to encourage participants' self-management skills. Additional intervention considerations included using video tapes featuring American Indian people and their families to demonstrate healthful lifestyles that reflect what is good, right and desirable for the health of the communities and the importance of raising children to be strong in body and spirit (Gilliland et al., 1998). Other observational learning aspects included Rio Grande Pueblo persons serving as mentors, session leaders and role models. In addition, self-efficacy was facilitated through short-term goal setting, emphasizing progress, no matter how small. In designing the curriculum components, these factors were kept in mind:
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Step 3.10 Confirm plans with stakeholders. |
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Scheduled meetings allowed the "Strong in Body and Spirit!" program to be presented to all stakeholders, including the involved community members, before the intervention, as well as to assure that all the needs of the stakeholders were being met. Additionally, community members who were to serve as mentors were identified during this step and they provided additional feedback to the design of the curriculum. In order to be faithful to the vision of the program in its evaluation, an evaluation framework for the program was developed during this planning phase with input from stakeholders. |
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Step 4.1 Draft timetable, budget, and plan for developing and testing communication mix. |
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"Strong in Body and Spirit!" planning team members and community conducted the intervention from 1992-1997. Formative research and pilot testing in the year before the onset of the program allowed adequate time for the development of the communication materials. Baseline interviews occurred 1 year before the intervention phase. The implementation of the program curriculum occurred roughly over 10 months, with a meeting every 6 weeks. The budget was set by the four-year NIH grant. |
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Step 4.2 Develop and test creative concepts. |
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The "Strong in Body and Spirit!" team developed a five-session lifestyle education program using communities' input and the theoretical backgrounds of the Social Action Theory and the Transtheoretical Model with particular attention to cultural issues. The team highlighted three core areas of diabetes care: diet, exercise, and support in making lifestyle changes, while emphasizing that such changes are good for everyone, not just people with diabetes. Additionally, community mentors presented the meetings with an atmosphere of trust and companionship in promoting the messages of "Strong in Body and Spirit!" The channels used in disseminating information about the core areas of diabetes care included the use of stories and prayers to generate a sense of pride and to add legitimacy to the program information. The stories and prayers gave a spiritual, legitimate tone to the program because in Native cultures, words are thought to carry great power and to either positively or negatively shape reality. They allow the positive power of words to create a new empowering vision of the future and reshape the way people think about diabetes (Carter et al., 1997). Stories helped to develop a new concept of living a healthy life within the context of having a disease such as diabetes (Carter, J., Perez, G., and Gilliland, S., 1999). A conceptual framework of stories in health communication served to demonstrate how stories can unify the concepts of illness (in this case diabetes) and wellness. The framework demonstrates that a person basically has two choices in facing diabetes: 1) accepting diabetes, which often generates fear, anger, hopelessness, or depression; or 2) accepting wellness and rejecting the fact of having diabetes. The problem has been that there are few tools for unifying the concepts of diabetes and wellness. When a person listens to a story they can choose to apply the information to their own life. A good story, because it speaks indirectly about diabetes, can begin to help unify the concepts of diabetes and wellness in a person's mind. At a knowledge level, a story shows that other people have lived with diabetes successfully. Finally, a new concept of living well with diabetes can emerge, allowing the knowledge to be internalized, and engendering a shift from the hopelessness that one usually feels when confronted with illness to a new vision for the future (Carter et al., 1999). To view the conceptual framework, see DB_Story_Model_SIBS.pdf. |
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Step 4.3 Develop and pretest messages. |
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Target group feedback from interviews and focus groups allowed the "Strong in Body and Spirit!" team to develop the message. Discussion of the following issues allowed the creation of "Strong in Body and Spirit!" messages in ways relevant to the Rio Grande Pueblo participants:
The curriculum was given to six bilingual community members and to the "Strong in Body and Spirit!" field coordinator to review and give recommendations.
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Step 4.4 Pretest and select settings. |
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Pretesting occurred within the target communities through the steps mentioned in Step 4.3. Eight pueblo communities were divided geographically into three intervention communities. Sites G1 and G2 would receive the curriculum in a group format, and site O received the sessions in a one-on-one format. The main outcome variable was change in HbA1c level. |
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Step 4.5 Select, integrate, and test channel-specific communication activities. |
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Indian Health Service clinics helped to identify persons diagnosed with Type 2 diabetes. Materials developed for the target audience were directed toward individual, group, and community communication channels to fulfill the shared mission of improving the lives of Native people with diabetes through the educational program, "Strong in Body and Spirit!". |
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Step 4.6 Identify and/or develop, pretest, and select materials. |
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Using the changes suggested from the pretesting of the target community "Strong in Body and Spirit!" was launched, keeping in the spirit of these three key elements of the program:
Additionally, observations made during the pilot testing phase revealed that the "Through the Eyes of the Eagle" story helped to foster interaction with the program leader (community mentor). When read at the beginning of the program, participants almost immediately displayed a greater willingness to express their concerns and ask questions about living with diabetes. The atmosphere of openness created by the story made it a vital part of the program implementation (Carter et al., 1997). |
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Step 4.7 Decide on roles and responsibilities of staff and partners. |
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Implementation of the program steps required different tasks and responsibilities for those involved:
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Step 4.8 Produce materials for dissemination. |
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Once the communication messages were set for the program, the following items were produced for "Strong in Body and Spirit!":
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Step 4.9 Finalize and briefly summarize the communication plan. |
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Storytelling and prayers created the foundation of the communication plan for "Strong in Body and Spirit!". The story "Through the Eyes of the Eagle" became a running theme throughout the implementation of the program to tie together the curriculum lessons and because it reflected traditional values including strength, wisdom, and courage. These elements helped to recognize the physical, mental, spiritual and emotional dimensions involved in maintaining balance in all of life, including diabetes care. Furthermore, videotapes and other methods (e.g., posters and pamphlets) reinforced the importance of healthy lifestyle behaviors for everyone, not just persons with diabetes. This message was one that provided assistance for participants in relation to choosing healthy exercise activities and healthful dietary behaviors for asking family for their support in making lifestyle changes and finding ways to avoid negative behaviors. Community mentors served to disseminate the messages of the curriculum throughout the five meetings. |
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Step 4.10 Share and confirm communication plan with appropriate stakeholders. |
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A preparation check confirmed the program implementation plan with the following stakeholders:
In addition, regular meetings with the team and stakeholders served as preparation for the launch of "Strong in Body and Spirit!" and as checkpoints throughout program implementation. Mentors were trained before each session they presented to insure that information was recent and relevant to the particular meeting. |
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Step 5.1 Identify and engage stakeholders. |
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Key stakeholders for evaluation included the team and community members involved in the planning of "Strong in Body and Spirit!," and NIH as the funding agency. The stakeholders all had some interest in the program evaluation, because it was important that the findings provide useful information for future programs and satisfy the target communities' needs. Frequent meetings of the stakeholders and quality assurance methods (e.g., participant questionnaires) served as a means of process evaluation during implementation. The outcome evaluation results were shared with all involved in the program and published in journal articles upon program completion. It should be noted that successful programs often generate new partnerships and new goals, requiring new evaluation plans. For example, collaboration with the Native American Diabetes Project with the American Diabetes Association (ADA) to launch "Awakening the Spirit" in 1999 focused on training workshops for Native American communities. Four pilot workshops were implemented and when evaluation documented positive findings for these workshops, the program was continued. |
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Step 5.2 Describe the program. |
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Eight bilingual community mentors were hired to implement the program, which consisted of five educational sessions. Each mentor attended training before each session to learn about diabetes and how to facilitate meetings in either a group or individual format. The "Strong in Body and Spirit!" sessions were held every 6 weeks and covered the following topics:
Eight pueblo communities were divided geographically into three intervention sites: O, G1, and G2. Site O received the intervention program in a one-on-one format and site G1 received the intervention in a group format with inclusion of family and friends. Site G2 served as the "usual care" (delayed intervention) community and they received "usual" programming in a group format. There were multiple offerings of the sessions at each site. Sessions lasted approximately 1 to 2 hours for the group setting. For those who received the individual, one-on-one format, meetings lasted approximately 45 minutes. |
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Step 5.3 Determine what information stakeholders need and when they need it. |
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The understanding and distribution of the "Strong in Body and Spirit!" results were important to all stakeholders, from the team to tribal leaders. Key evaluation questions for the evaluation data collection and subsequent dissemination of results may have included: Process evaluation questions:
Outcome evaluation questions:
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Step 5.4 Write intervention standards that correspond with the different types of evaluation. |
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Intervention standards for "Strong in Body and Spirit!" could include: To create a culturally relevant program that reaches community members with a high participant satisfaction rate, as measured by participant questionnaires. To increase the number of "Strong in Body and Spirit!" participants who regularly engage in low to moderate intensity exercise to at least 40 percent by the end of programming, as measured by exit interview (baseline 20 percent - source Griffin et al., 1999). To increase the number of "Strong in Body and Spirit!" participants who regularly consume a low-fat, low-sugar diet to at least 60 percent by the end of programming, as measured by exit questionnaire (baseline 40 percent-source Griffin et al., 1999). To improve the glucose control of "Strong in Body and Spirit!" participants as evidenced by decreased A1c values over the period of the study (reference range of 4.5-5.7 percent; baseline mean average 8.7 percent-source Griffin et al., 1999). |
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Step 5.5 Determine sources and methods that will be used to gather data. |
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Key informant interviews and questionnaires provided evaluation data for "Strong in Body and Spirit!". An anonymous questionnaire was given to participants after each educational session that included the following questions:
Qualitative processes including group nominal process and content analysis served to describe the range of participant questionnaire responses. Participation and retention of participants were calculated using the satisfaction questionnaires. Post-session exit interviews of community mentors addressed the general perceptions of the sessions, the participants' attitudes toward diabetes and persons with diabetes, and factors that kept participants from coming to the sessions. The interviews lasted approximately one hour and were open-ended in nature to allow the generation of information on a wide range of topics concerning the mentors and the program. Evaluation measures also included using Dartmouth COOP charts adapted for use in American Indian communities (Gilliland, Wilmer, McCalman, et al, 1998), tracking food intake, and assessing level of physical activity. Additional physiological measures served to provide information on participants' weight change, body mass index levels, glycemic control and A1c levels both before and after program implementation. |
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Step 5.6 Develop an evaluation design. |
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The evaluation design had three intervention arms: group participation intervention, one-on-one intervention, and "usual care" (delayed intervention). Eight communities were divided geographically into three intervention sites: O, G1, and G2. Site O received the intervention program in a one-on-one format (00) and site G1 received the group format working with family and friends, a preference of the community (FF). Site G2 served as the delayed intervention community and was given a usual care program in group format (UC). The data assessment for the program evaluation included:
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Step 5.7 Develop a data analysis and reporting plan. |
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Quantitative Data: Analyses of covariance was used to test the hypothesis of intervention differences in A1c level. This was expected to be the primary outcome of the study. See Step 6.4 for results. Qualitative Data: The participant questionnaires were analyzed using content analysis to categorize statements and marking them to reflect concepts. Interest in food, exercise, and videotapes was discerned from the three questions (What did you like best about today's session? What didn't you like about today's session? What would you add to the session to make it better?) along delivery type and site. Common themes were generated through grouping responses according to the component mentioned by a participant. Nominal group process can allow consensus in categorizing the statements and established the content validity of the groupings. A descriptive summary of the ranges of responses to each question by site and mode of delivery allowed comparison and the determination of the following:
Participation was calculated by adding the number of forms from each session. Retention rates were generated by dividing the number of participants at session 5 by the number of participants at session one. Quantitative chi-squared analysis compared the proportion of negative to non-negative comments and the retention rates across site and delivery mode. The open-ended mentor exit interviews were audiorecorded and transcribed. An outside researcher uninvolved in the intervention organized the interview responses by questions to create a shorthand document of responses. Elements that mentors noted as significant for keeping participants from coming to program sessions at their site were grouped according to response themes. To reach consensus, three NADP researchers used nominal group process and group responses across all three sites according to similar themes. |
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Step 5.8 Formalize agreements and develop an internal and external communication plan. |
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The internal communication plan included the community-wide meetings with the tribal leaders, health workers, community leaders, and medical staff. These persons provided the vision for the design and development of the intervention, and allowed their ideas and culture to be infused throughout the program, which increased its acceptance and effectiveness. Additionally, the inclusion of a community member on the planning team led to a strong bond between the "Strong in Body and Spirit!" staff and the target audience. The community member developed into the principal leader of the cultural and community aspects of the study by taking a lead role in team trainings. This helped to facilitate the involvement of tribal members throughout the country in the "Strong in Body and Spirit!" program, thus perpetuating the inspiration of the program findings to external audiences. |
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Step 5.9 Develop an evaluation timetable and budget. |
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Initial baseline data assessment occurred one year prior to program implementation to allow outcome evaluation measures to be assessed after the conclusion of the program. In addition, evaluation methods were continual throughout the implementation of the program, through participant questionnaires at the culmination of each meeting and other process evaluation measures. The NIH grant and additional monies from the Bristol Myers Squibb foundation facilitated the evaluation proceedings. In 1999, the American Diabetes Association (ADA) implemented the "Awakening the Spirit - Pathways to Diabetes Prevention and Control" program, in partnership with the Native American Diabetes Project, and evaluated four pilot team building workshops held in tribal communities. |
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Step 5.10 Summarize the evaluation implementation plan and share it with staff and stakeholders. |
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The evaluation plan of "Strong in Body and Spirit!" included formative, process and outcome evaluation measures. Formative evaluation included the assessment of initial community-wide activities ranging from meetings with key community people, such as tribal leaders, to the baseline interviews with program participants. Process evaluation served to answer questions related to participant involvement. This included questions such as "To what extent did the 'Strong in Body and Spirit!' target group participate in the program curriculum and activities?" and "To what extent did friends and family of 'Strong in Body and Spirit!' participants become involved in 'Strong in Body and Spirit!'? Other evaluation methods included the questionnaires and interviews to measure participants and mentors perceptions of the program and the use of stories as a foundation of the program. Outcome evaluation questions "What were the effects of 'Strong in Body and Spirit!' on self-reported behavior in relation to exercise and eating a healthy diet?" Because evaluation was a continual process throughout the development and implementation of the program, the program was able to address the effectiveness of their planning efforts. |
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Step 6.1 Integrate communication and evaluation plans. |
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Meetings with community members involved in the planning process and staff allowed for integration between the communication and evaluation plan before the initial implementation of the program. The communication and evaluation plans were merged to assure that all activities in "Strong in Body and Spirit!" were considered in the evaluation measures and that the activities planned in the communication mix were relevant to the evaluation standards set by the program planners. |
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Step 6.2 Execute communication and evaluation plans. |
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"Strong in Body and Spirit!" communication and education segment was launched in January 1995 and continued throughout most of the year. Both the story "Through the Eyes of the Eagle" and the program prayer played intimate roles in the launch of the communication plan, by engaging participants in ways that were emotional and spiritual in relation to their diabetes care and health behaviors. Evaluation measures were collected continuously throughout the implementation of the program by participant session questionnaires and other process evaluation methods and upon program completion through exit interviews and other methods. |
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Step 6.3 Manage the communication and evaluation activities. |
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Process evaluation
measures served to ensure that the communication and evaluation plans
were loyal to the design of "Strong in Body and |
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Step 6.4 Document feedback and lessons learned. |
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One of the primary findings from this community-directed intervention was that participants in the intervention had significant benefit in glycemic control at one year compared with the usual care control after adjusting for covariates. Adjusted mean change in the A1c value varied significantly across the three arms at one year. The Usual Care control arm (with 33 participants) showed a statistically significant increase in adjusted mean A1c change of 1.2%, while both intervention arms showed a small non-significant increase in the adjusted mean change 0.5% and 0.2% for Family and Friends (32 participants) and One on One intervention arms (39 participants), respectively. The increase was statistically significantly smaller in the combined intervention arms, 0.4% compared with Usual Care, 1.2%. Because the A1c level has been shown to be predictive of morbidity and mortality, the "Strong in Body and Spirit!" lifestyle intervention has the potential to substantially reduce microvascular complications, mortality, and health care utilization and costs if the change can be sustained over time (Gilliland, Azen, Perez, et al, 2001). Another key finding of the program is in weight changes. Weight decreased 2.0 lbs in the Family and Friends arm and 1.8 pounds in the One on One arm and increased 1.7 pounds in the Usual Care arm; however these differences were not statistically significant. The combined intervention arms were compared with the Usual Care arm. Weight decreased 1.9 pounds in the combined intervention arms, compared to the 1.7 pound increase in Usual Care, a difference that was statistically significant (Gilliland, et al, 2001). Additionally, "Strong in Body and Spirit!" team documented the program planning, implementation and evaluation to serve as quality assurance mechanisms and to facilitate discussion surrounding what was working, what was not working, what needed improvement, and what steps were used in planning this sort of program. Participant questionnaires indicated that the majority of the responses were positive regarding the "Strong in Body and Spirit!" curriculum (96.7 percent) (Griffin et al., 1999). Also, the participant retention to the study was high (89 percent following the intervention). Results from exit interviews of mentors also supported this finding. Participants expressed that certain program components should play a larger role in "Strong in Body and Spirit!" and gave suggestions for items that were not included in the program. Suggestions included the following: For food activities add:
For video activities add:
Additional curriculum information:
For exercise-related activities add:
Some general lessons also were learned from the program for the "Strong in Body and Spirit!" team. These consisted of the following ideas: To aid in program participation from conflicts with activities:
To aid in increasing knowledge gained from the program:
To aid in program recruitment:
To aid in building positive attitudes towards "Strong in Body and Spirit!":
To increase positive beliefs and attitudes about diabetes:
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Step 6.5 Modify program components based on evaluation feedback. |
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Information collected from the evaluation process will be used in future implementations of "Strong in Body and Spirit!" to:
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Step 6.6 Disseminate lessons learned and evaluation findings. |
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The results of the SIBS lifestyle intervention give people with diabetes and their families hope for preventing or delaying the complications associated with diabetes and lend support to the usefulness of interventions that use culturally appropriate materials (Gilliland, Azen, Perez, et al, in press, 2001). Program results have been disseminated to local communities and nationally through a grant with the Bristol Myers Squibb Foundation. The curriculum development process and lessons learned from this program have also been published in peer-reviewed journals. The national American Diabetes Association (ADA) (http://www.diabetes.org) joined with the Native American Diabetes Project as "partners in flight," incorporating the "Strong in Body and Spirit!" program into their "Awakening the Spirit - Pathways to Diabetes Prevention and Control" program, an outreach for American Indian and Alaska Native communities aimed at promoting awareness in Native American populations about the seriousness of diabetes and the importance of regular physical activity and making healthy food choices in the fight against diabetes. A focus of the partnership is providing team building trainings to tribal teams in their communities. Programs for people with diabetes often adapt the "Strong in Body and Spirit!" curriculum for their interventions. Examples of how the program has spread across the country are illustrated by pictures and referenced below. The Standing Rock Sioux Tribe Diabetes Program and Volunteers are pictured planning the next steps for "Strong in Body and Spirit!" program in Fort Yates, ND (DB-SIBS_Planning_Poster.jpg). A storyboard created by the Michigan Diabetes Control Program, TENDON Diabetes Outreach Network is pictured (DB-SIBS_Storyboard.jpg). To date, 94 tribal community teams have been trained and 60 percent have implemented the "Strong in Body and Spirit!" program. Evaluation of facilitating factors and barriers to implementation of the "Strong in Body and Spirit!" and its "partner in flight," the ADA's "Awakening the Spirit - Pathways to Prevention and Control" program will set the stage for future research and programming. |
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References: | ||||||
Bandura, A. O. (1977). Self-efficacy: toward a unifying theory of behavior change. Psychology Review, 84, 191-215. Bandura, A. (1986). Social foundations of thought and action: a social cognitive theory. Englewood Cliffs, NJ: Prentice-Hall. Carter, J.S., Gilliland, S.S., Perez, G.E., Levin, S., Broussard, B. A., Valdez, L., Bunningham-Sabo, L.D., Davis, S.M. (1997). Native American Diabetes Project: Designing culturally relevant education materials. Diabetes Educator, 23(2): 1331-39. Carter, J. S., Perez, G. E., & Gilliland, S. S. (1999). Communicating through stories: experience of the Native American Diabetes Project. Diabetes Educator, 25, 179-187. Carter, J. S. (1993). Abstract. Family-Centered Diabetes Project for Pueblo Native Americans. Rio Grande Pueblo Programs, Research and Projects. http://www.riogrande.org/programs/abstract/ab_039.htm Carter J., Horowitz R., Wilson, R., & Sava S. (1989) "Tribal differences in diabetes: Prevalence among American Indians in New Mexico. Public Health Reports 104: 665-669. Centers for Disease Control and Prevention (1997). Principles of Community Engagement. Atlanta, GA., http://www.cdc.gov/phppo/pce/index.htm. Ewart, Craig K. (1991). Social action theory for a public health psychology. American Psychologist. Vol 46(9), Sep 1991, 931-946. Gilliland, S.S., Azen SP, Perez, G.E. Carter J.S. (2001). Strong in Body in Spirit: Results of a Lifestyle Intervention for Native American Adults with Diabetes in New Mexico. Diabetes Care. In Press. Gilliland, S., Willmer, A., McCalman, R. Davis, S. Hickey, M. Perez, G., Owen, C. & Carter, J. (1998) Adaptation of the Dartmouth COOP Charts for use among American Indian people with diabetes. Diabetes Care, 21(5), 770-776. Gilliland, S. S., Carter, J. S., Perez, G. E., Two Feathers, J., Kenui, C. K., & Mau, M. K. (1998). Recommendations for development and adaptation of culturally competent community health interventions in minority populations with type 2 diabetes mellitus. Diabetes Spectrum, 1, 166-174. Gohdes, D.M., Diabetes in North American Indians and Alaska Natives. In: Diabetes in America. 2nd Edition. Bethesda, MD: National Diabetes Data Group of the National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health, 1995, 683-702. Griffin, J. A., Gilliland, S. S., Perez, G., & Carter, J. S. (1999). Participant satisfaction with a culturally appropriate diabetes education program: The Native American Diabetes Project. Diabetes Educator, 25, 351-363. Griffin, J. A., Gilliland, S. S., Perez, G., Upson, D., & Carter, J. S. (2000). Challenges to participating in a lifestyle intervention program: The Native American Diabetes Project. Diabetes Educator, 26, 681-689. Hill, M.A. (1997). The Curse of Frybread: The Diabetes epidemic in Indian Country. Winds of Change, Summer 1997, 26-33. Indian Health Services (2000). Interium Report to Congress. http://www.ihs.gov/MedicalPrograms/Diabetes/congressrprt.pdf. Native American Diabetes Project (1995). "Strong in Body and Spirit" Curriculum. http://www.laplaza.org/health/dwc/nadp/index.html. National Diabetes Information Clearinghouse (1999). Diabetes in American Indians and Alaska Natives fact sheet. National Institute of Diabetes and Digestive and Kidney Diseases, NIH Publication No. 99-4551, April 1999. Perez, G. (1998). Through the eyes of the eagle: Interweaving health with tradition. Diabetes Forecast, December 1998. Prevalence of Diagnosed Diabetes Among American Indians/Alaskan Natives-United States, 1996. MMWR, October 30, 1998, 47(42), 901-904. Michigan Diabetes Control Program. TENDON Diabetes Outreach Network (2001). Diabetes Directions. http://www.diabetes-midon.org Standing Rock Sioux Tribe Diabetes Control Program. 701-854-7132. Tom-Orme, L. (1997). Awakening our spirit: The American Diabetes Association Native American Program. Winds of Change, Summer 1997, 36-39. |