Native American Diabetes Project
"Strong in Body and Spirit!"
http://www.laplaza.org/health/dwc/nadp/index.html

This example is offered in tribute to Dr. Janette Carter, who channeled a vision for reshaping the image of diabetes in communities into reality by honoring the wisdom and traditions of the people of the Rio Grande Pueblo communities. Through the example of her own life, Janette modeled for us the ways of respect, openness, courage, gratitude, and integrity. She left a legacy that continues as more communities around the country are transformed by the power of their stories and of their people to create a new, hopeful picture of what they can do together to control and prevent diabetes.

Native American Diabetes Project: Strong in Body and Spirit! Team
Division of Diabetes Translation, Centers for Disease Control and Prevention

Janette S. Carter, MD
1952-2001

"The wind beneath our wings."

eagle in flight

 

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:

  • "Through the Eyes of the Eagle" story (DB_Through_the_Eyes_of_the_Eagle.pdf)
  • "For a Healthier Tomorrow" prayer (DB_For_a_Healthier_Tomorrow.pdf)
  • "For a Healthier Tomorrow" prayer poster (DB_SIBS_Poster.jpg)
  • Standing Rock Sioux Tribe Diabetes Program and Volunteers planning next steps for "Strong in Body and Spirit!" program in Fort Yates, ND (DB-SIBS_Planning_Poster.jpg),
  • A storyboard adapted from the "Through the Eyes of the Eagle" story by the Michigan Diabetes Control Program (DB-SIBS_Storyboard.pdf)
  • The American Diabetes Association's Native American Program partnered with the Native American Diabetes Project of the University of New Mexico to create "Awakening the Spirit -Pathways to Diabetes Prevention and Control." A radio PSA is available: "Awakening the Spirit-Pathways to Diabetes Prevention and Control" radio PSA (DB_Awakening_the_Spirit.rm)

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.

Phase 1: Describe Problem

Step 1.1 Write a problem statement.

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:

Step 1.2 Assess the problem's relevance to your program.

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".

Step 1.3 Explore who should be on the planning team and how team members will interact.

NIH funded core staff to generate the planning process and implementation of "Strong in Body and Spirit!". Staff included:

  • The Native American Diabetes Project (NADP) Staff, including persons from the University of New Mexico and from the Rio Grande Pueblo communities:
    • Janette Carter, MD, Assistant Professor
    • Susan Gilliland, MPH, Project Coordinator
    • Sarah Levin, BA, Health Educator
    • Georgia Perez, Community Coordinator
  • Indian Health Service Staff

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."

Step 1.4 Examine and/or conduct necessary research to describe the problem.

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.

Step 1.5 Determine and describe distinct subgroups affected by the problem.

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.

Step 1.6 Write a problem statement for each subgroup you plan to consider further.

Primary Audience

  • Rio Grande Pueblo American Indian adults with diabetes need accurate and culturally-relevant communication networks, information, and skills to support their physical, mental, spiritual and emotional efforts to control their diabetes.

Secondary Audience

  • Rio Grande Pueblo American Indian friends and family are needed to provide support (physical, mental, spiritual and emotional) to persons managing their diabetes.

Step 1.7 Gather information necessary to describe each subproblem defined in new problem statement.

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):

  • The average age was 58.2 (between the ages of 18 and 88), with 68 percent of women and 31.8 percent men.
  • Most people were obese.
  • 70.8 percent of the women and 55.2 percent of the men had an unhealthy Body Mass Index (BMI), a measure of weight in kilograms divided by height in meters squared.
  • A1c was high, with levels between 4.2 and 14 percent (reference range usually about 4.5-5.7 percent).

Questionnaires were given to assess food consumption and exercise:

Eating Habits:

  • Participants had knowledge of fat and sugar in foods, but consumed high fat and sugar-filled foods at least 2 times a week.
  • 23 percent identified themselves as being in the preparation stage and 40 percent in the action stage for making dietary changes.

Physical Activity:

  • 20 percent of participants reported exercising "regularly," 35 percent had "started but found it difficult to keep up," 28 percent were exercising "once in a awhile," and 17 percent were "not exercising."
  • 30 percent of participants were "regular exercisers" as defined by time, frequency, and intensity (run/jog, walk, bike, hike, or aerobics).
  • Walking was the greatest contributor to regular exercise and without it, only 6 percent of participants were regular exercisers.
  • 28 percent were in the preparation and 35 percent in the action stage of change for making changes in exercise.

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.

Click here to see the table.

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.

Step 1.8 Assess factors and variables that can affect the project's direction.

Click here to see the table.

Phase 2: Analyze Problem

Step 2.1 List the direct and indirect causes of each subproblem that may require intervention(s).

Click here to see the table.

Step 2.2 Prioritize and select subproblems that need intervention(s).

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:

  • food and nutrition
  • exercise
  • family and community support
  • the importance of children
  • raising children to be strong in body and spirit

These values became the main themes for the "Strong in Body and Spirit!" curriculum.

Step 2.3 Write goals for each subproblem.

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:

Goal 1: To promote healthy living with diabetes in the context of traditional values and the preservation of these values for Rio Grande Pueblo persons using the "Strong in Body and Spirit!" curriculum.
Goal 2: To reduce the incidence of diabetes complications by raising awareness about the disease, its risk factors and promoting healthy lifestyle choices.
Goal 3: To reinforce the skills in relation to exercise and exercise maintenance among those involved in "Strong in Body and Spirit!".
Goal 4: To reinforce the skills in preparing and eating healthy foods among people involved in "Strong in Body and Spirit!"
Goal 5: To engage and maintain family and community support to raise awareness about diabetes and strategies for promoting health.

Step 2.4 Examine relevant theories and best practices for potential intervention(s).

  • Health Communication/Education
  • Health Policy/Enforcement
    • Media Advocacy
  • Health Engineering
  • Health-Related Community Service

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:

  • Enhance knowledge about the importance of a healthy lifestyle for everyone, not just persons with diabetes.
  • Increase motivation and skills for behavior change by providing information on exercise and diet in a culturally relevant manner.
  • Build on existing social norms that support these healthy lifestyle choices at a community level through storytelling and prayers.

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).

Step 2.5 Consider SWOT and ethics of intervention options.

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

  • Stories have the power to address issues with emotional undertones in an indirect, nonjudgmental manner. Listeners are able to interpret and apply the information in a way that is personally meaningful to them (Carter, Perez, and Gilliland, 1999).
  • Stories can help to create a new empowering vision of the future and reshape the way people think about disease (Carter, Perez, & Gilliland, et al., 1999).
  • Native communities have a long tradition of storytelling to communicate cultural norms, pass on cultural wisdom, and assist the individual or communities in achieving wellness and harmony.

Weaknesses

  • Stories need to be carefully chosen and "checked out" with elders in the communities to assure their appropriateness and relevance.
  • In some cases, stories may be too indirect to communicate more specific points so they must be followed by more specific information.

Opportunities

  • Opportunity for a program like this to serve as a model for other diabetes programs in communities.
  • National interest has been raised about diabetes and the disproportionate burden borne by American Indians and Alaska Natives.

Threats

  • There could be a lack of interest in the program if there is no "vision" to catch the community's interest.

What ethical considerations were considered for this strategy?

  • One of the first steps was creating a collaborative team that acknowledges that cultural knowledge and expertise resides with the community members, and that the community is a full partner in the process of intervention development. The evaluation expertise resides with the educators and researchers, who may be community members.
  • The Native American Diabetes Project (NADP) Code of Ethics: The NADP will work on a daily basis 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.
  • The tone of the curriculum was to be nonjudgmental and built upon the strengths of the communities, not deficits or problems (Carter, et al., 1997).
  • Some participants may not want it known that they have diabetes and would not want to attend group educational sessions.

What aspects were strengthened within the team to carry out this activity?

  • Building of the team in an inclusive, respectful manner.

Summarize the needs of the intervention:

  • The intervention requires community involvement and respect to cultural traditions in creating educational and communication materials to increase the skills and knowledge related to healthy behaviors.

Step 2.6 For each subproblem, select the intervention(s) you plan to use.

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

Click here to see the logic model.

Step 2.7 Explore additional resources and new partners.

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:

  • Tribal governors and other leaders
  • Tribal health workers (especially Community Health Representatives)
  • Interested community members (interviewers, artists)
  • Indian Health Service professionals (doctors, nurse practitioners, physician's assistants, nurses, nutritionists, health educators, administrators, and others from the local service unit, area, and national levels)
  • University of New Mexico professionals (physicians, nurses, health educators, exercise specialists, nutritionists, graphic artists, support staff)
  • Persons diagnosed with diabetes
  • Family members of persons with diabetes

Step 2.8 Acquire funding and solidify partnerships.

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.

Phase 3: Plan Intervention

Step 3.1 For each subproblem, determine if intervention is dominant or supportive.

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.

Areas of Focus:
  • Need to eat nutritional foods
  • Need for regular physical activity
  • Social, work, and family role in diabetes care
PRIMARY COMMUNICATION PRACTICES
For Primary Audience (Persons with Diabetes)

Increasing skills and self-efficacy in relation to nutritious eating, exercise and asking family for support. Methods for intervention included:

  • Storytelling by people living with diabetes
  • Stories that help create a vision of hope and reshape the way people think about a disease like diabetes
  • Honoring spirituality, including prayers
  • Videotapes
  • Personal short-term goal setting
  • Role-playing
  • Observational learning
  • Recipe testing
  • Community mentors to disseminate communications material
PRIMARY COMMUNICATION PRACTICES
For Secondary Audience (Friends, Family, and Community of Persons with Diabetes)

Changing family and community norms about exercise and eating. Methods for intervention included:

  • Involving family and friends in activities.
  • Brochures
  • Pamphlets
  • Community meetings

Step 3.2 Determine whether potential audiences contain any subgroups (audience segments).

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.

Step 3.3 Finalize intended audiences.

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.

Step 3.4 Write communication goals for each audience segment.

The communication goals of "Strong in Body and Spirit!" may have included:

  • 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.
  • 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 were a traditional part of Rio Grande Pueblo lifestyle.
  • To increase awareness in the target population about foods that are low in fat and sugar but still taste good.
  • To improve glucose control in the target population.

Step 3.5 Examine and decide on communication-relevant theories and models.

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).

Step 3.6 Undertake formative research.

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):

  • Meetings with clinic staff, patients, tribal leaders, and tribal health workers
  • Focus group sessions with all stakeholders to reinforce information and themes generated at meetings
  • Individual meetings for those community members who declined to participate in group meetings
  • Participant interviews
  • Collaboration between IHS staff, community members, and the university research staff. This included joint meetings to discuss successful initiatives in other IHS areas.
  • Community member feedback
  • Pilot testing of the program curriculum

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.

Step 3.7 Write profiles for each audience segment.

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:

  • Assist their family members and friends in setting realistic, short-term goals and help with daily activities (e.g., making time for exercise).
  • Provide encouragement, motivation, and support
  • Help reinforce exercise and healthy eating habits by engaging in these activities themselves.

Step 3.8 Rewrite goals as measurable communication objectives.

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:

  • To create a culturally relevant program that reaches community members with a high participant satisfaction rate, as measured by participant questionnaires.

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:

  • 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).

Goal: To increase awareness in the target population about foods that are low in fat and sugar but still taste good.

Objectives:

  • 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).

Goal: To improve glucose control in the target population as reflected by improved A1c levels.

  • 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 4.5-5.7 percent; baseline mean average 8.7 percent-source Griffin et al., 1999).

Step 3.9 Write creative briefs.

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:

  • To create a culturally relevant program that reaches community members with a high participant satisfaction rate, as measured by participant questionnaires.

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:

  • 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).

Goal: To increase awareness in the target population about foods that are low in fat and sugar but still taste good.

Objectives:

  • 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).

Goal: To improve glucose control in the target population as reflected by improved A1c levels.

  • 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).

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:

  • Become more physically fit.
  • Keep or achieve a healthy weight.
  • Maintain or achieve a healthy blood glucose level.
  • Be more active in their communities and families.

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:

  • To listen to ideas about diabetes program design, development, and implementation from the target population and to engage community people in open discussions about healthy lifestyle habits.
  • To promote activities in ways that are culturally sensitive, interesting, and familiar to the target population and Rio Grande Pueblo communities.
  • To encourage the target population to ask for help and support from, and give help and support to, family and friends to make these changes easier and fun.

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:

The NADP will work on a daily basis 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.

Media:

  • Binders
  • Brochures
  • Calendars
  • Pamphlets
  • T-shirts
  • Water-bottles
  • Videotapes


Creative considerations:

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:

  • Many people don't feel that they are ill unless they have visible symptoms or pain.
  • Disease or the possibility of disease often evokes great emotional undertones.
  • Western culture provides many distractions from healthy lifestyle choices, such as convenience foods, television and motorized transportation
  • Many health education programs designed for the general population may not adequately address cultural perspectives on health issues.

Step 3.10 Confirm plans with stakeholders.

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.

Phase 4: Develop Intervention

Step 4.1 Draft timetable, budget, and plan for developing and testing communication mix.

"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.

Step 4.2 Develop and test creative concepts.

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.

Step 4.3 Develop and pretest messages.

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:

  • Perception of the main idea and goal of the "Strong in Body and Spirit!" program
  • Thoughts on the wording of the messages
  • Suggestions on improving or changing the messages
  • How well the programs encouraged persons

The curriculum was given to six bilingual community members and to the "Strong in Body and Spirit!" field coordinator to review and give recommendations.

  • Feedback determined that the curriculum design and information were relevant. Changes in the wording (using more straightforward language) were recommended.
  • Five meetings were planned over the course of the year. The initial titles of the meetings were changed from catchy phrase titles to ones that accurately reflected the content of the curriculum. For example, "Let's Get Physical" was changed to "Exercise More!" (Carter et al., 1997). The programs were:
    • Meeting one: Exercise More!
    • Meeting two: Eat Less Fat
    • Meeting three: Eat Less Sugar
    • Meeting four: Together We Can
    • Meeting five: Staying on the Path
  • The first three sessions covered nutrition and exercise information. The fourth meeting, "Together We Can" encouraged participants to ask for and give support in making lifestyle changes and the fifth "Staying on the Path" engaged the participants in learning ways to maintain the lifestyle changes. The full 5-session curriculum for participants is available on the NADP website (http://www.laplaza.org/health/dwc/nadp/index.html).
  • Additionally, the community coordinator (Georgia Perez) wrote a story (DB_Through_the_Eyes_of_the_Eagle.pdf) to introduce the program and provide a theme for the sessions. The eagle, which represents wisdom, courage, and strength to many indigenous peoples of North America, became the project symbol. A poster titled "Feast Day Food" was developed to accompany the "Feast Day Story" as a means of demonstrating reduced fat and sugar recipes. Videotapes of people with diabetes telling their stories created another method of storytelling to be a part of the curriculum. Also, a prayer (DB_For_a_Healthier_Tomorrow.pdf) was written by the community coordinator, which served to inspire participants of the "Strong in Body and Spirit!" program and others around the country when it was shared with a larger national audience through illustrated posters and bookmarks developed by the American Diabetes Association. The poster may be viewed here: DB_SIBS_Poster.jpg.
  • Pilot testing indicated that the curriculum was well received. Participants appreciated the stories and video segments. An earlier study using focus groups with Rio Grande Pueblo persons assessed the Dartmouth COOP charts, a method for assessing health status in populations, for use among American Indians with diabetes. These assessments led to adaptation of the charts and subsequent testing showed they were culturally acceptable and capable of measuring constructs adequately (Gilliland, Wilmer, McCalman, et al, 1998).
  • The Native American Diabetes Program (NADP), and the American Diabetes Association (ADA) worked together to develop the "Awakening the Spirit" program released in 1999. ADA produced a radio public service announcement (PSA) for the "Awakening the Spirit" campaign. To listen to the PSA, see DB_Awakening_the_Spirit.rm.

Step 4.4 Pretest and select settings.

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.

Step 4.5 Select, integrate, and test channel-specific communication activities.

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!".

Click here to see the table.

Step 4.6 Identify and/or develop, pretest, and select materials.

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:

  • "Through the Eyes of the Eagle" story as the theme of the meeting sessions, interweaving a health message with traditional storytelling,
  • The "Feast Day Food" poster and story to reinforce healthy recipes and eating habits, and
  • The "For a Healthier Tomorrow" prayer to give spiritual inspiration, fulfilling the vision of "Strong in Body and Spirit!".

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).

Step 4.7 Decide on roles and responsibilities of staff and partners.

Implementation of the program steps required different tasks and responsibilities for those involved:

  • Gathering input from the community
  • Development of curriculum by "Strong in Body and Spirit!" staff and community members
  • Pretesting of curriculum elements in the target community by "Strong in Body and Spirit!" staff
  • Recruitment and training of community mentors by "Strong in Body and Spirit!" staff
  • Recruitment of participants through letters, phone calls, and home visits by staff
  • Implementation of the program by community mentors and staff and data gathering for evaluation purposes
  • Evaluation of the program

Step 4.8 Produce materials for dissemination.

Once the communication messages were set for the program, the following items were produced for "Strong in Body and Spirit!":

  • Binders for participants that included meeting agendas, the "Through the Eyes of the Eagle" story, and other curriculum elements
  • Brochures
  • Calendars for goal-setting
  • Pamphlets
  • T-shirts
  • Water-bottles
  • Videotapes
  • "Feast Day Food" posters

Step 4.9 Finalize and briefly summarize the communication plan.

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.

Step 4.10 Share and confirm communication plan with appropriate stakeholders.

A preparation check confirmed the program implementation plan with the following stakeholders:

  • Tribal health workers
  • Tribal leaders
  • Other community leaders
  • Community mentors

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.

Phase 5: Plan Evaluation

Step 5.1 Identify and engage stakeholders.

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.

Step 5.2 Describe the program.

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:

  • Exercise
  • Diet - Fat and Sugar
  • Family/community support - Getting and giving support to make lifestyle change.
  • Maintaining behavior changes

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.

Step 5.3 Determine what information stakeholders need and when they need it.

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:

  1. To what extent did the "Strong in Body and Spirit!" target group participate in the program curriculum and activities?
  2. What communication channels (e.g. print, brochures) were used and to what extent?
  3. To what degree did friends and family of "Strong in Body and Spirit!" participants become involved in "Strong in Body and Spirit!" activities?

Outcome evaluation questions:

  1. What were the prevailing knowledge, attitudes and beliefs about diabetes, lifestyle practices, and diabetes complications?
  2. What did participants report as their sources of information regarding diabetes, lifestyle behaviors and diabetes complications, outside of "Strong in Body and Spirit!"?
  3. What were the effects of "Strong in Body and Spirit!" on behavior in relation to exercise and eating a healthy diet?
  4. What were the effects of "Strong in Body and Spirit!" on mean blood glucose levels as measured by A1c levels? Weight change?
  5. Were there any differences between reports of knowledge and behavior between males and females participating in "Strong in Body and Spirit!"? Those 18-35 versus those over 35?
  6. How satisfied were the participants with the program?

Step 5.4 Write intervention standards that correspond with the different types of evaluation.

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).

Step 5.5 Determine sources and methods that will be used to gather data.

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:

  1. What did you like best about today's session?
  2. What didn't you like about today's session?
  3. What would you add to the session to make it better?

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.

Step 5.6 Develop an evaluation design.

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:

  • Conducting baseline and outcome measures including physiological data and interviews.
  • Assessing the questionnaires given to session participants at the conclusion of each meeting.
  • Conducting open-ended exit interviews with mentors.

Step 5.7 Develop a data analysis and reporting plan.

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:

  • Whether participant satisfaction varied by site
  • Whether participant satisfaction differed by delivery type, and
  • The range of participant responses toward, and overall satisfaction with, the education program.

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.

Step 5.8 Formalize agreements and develop an internal and external communication plan.

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.

Step 5.9 Develop an evaluation timetable and budget.

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.

Step 5.10 Summarize the evaluation implementation plan and share it with staff and stakeholders.

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.

Phase 6: Implement Plan

Step 6.1 Integrate communication and evaluation plans.

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.

Step 6.2 Execute communication and evaluation plans.

"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.

Step 6.3 Manage the communication and evaluation activities.

Process evaluation measures served to ensure that the communication and evaluation plans were loyal to the design of "Strong in Body and
Spirit!" Results from participant questionnaires led to modification of the program while it was being implemented, because the questionnaires asked about participant satisfaction with the program so far. These efforts permitted the communication and evaluation activities to be supervised throughout the implementation of the program.

Step 6.4 Document feedback and lessons learned.

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:

  • Cooking class
  • Sample meals to discuss at the session
  • Information on vitamins

For video activities add:

  • Video with local Rio Grande Pueblo persons
  • Exercise video
  • Video about children with diabetes

Additional curriculum information:

  • How to get blood sugar monitor for home testing
  • Feedback from family about how they feel about helping a diabetic family member to eat low sugar and fat

For exercise-related activities add:

  • Walking to the sessions
  • Starting a participant exercise program

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:

  • Have more mentors and set certain mentors for specific times
  • Assist community mentors in finding places to hold sessions
  • Hold more frequent meetings with tribal leaders and other involved community organizations

To aid in increasing knowledge gained from the program:

  • Plan meetings geared toward certain groups in the communities
  • Provide more detailed program/session literature

To aid in program recruitment:

  • Hold consensus meetings with mentors and community organizations to develop recruitment methods
  • Have mentors go door-to-door to recruit participants

To aid in building positive attitudes towards "Strong in Body and Spirit!":

  • Develop partnerships/active involvement
  • Increase program visibility
  • Provide more ongoing communication

To increase positive beliefs and attitudes about diabetes:

  • Emphasize that the program is for everyone
  • Encourage participation of key/respected community members to increase social status of program participation

Step 6.5 Modify program components based on evaluation feedback.

Information collected from the evaluation process will be used in future implementations of "Strong in Body and Spirit!" to:

  • Adjust the program curriculum to provide more than one meeting time and method of information dissemination for each curriculum section.
  • Include the new suggestions by the Rio Grande Pueblo communities.
  • Show the effectiveness of a culturally relevant diabetes project at reducing diabetes mortality and morbidity.
  • Maintain the interest and dedication of stakeholders, as well as improve communication channels through improving the dissemination methods of the findings
  • Show the efficacy of such a program, in order to find new channels to provide information and create interventions.
  • Perpetuate the awareness of the general public and researchers in relation to diabetes and its complications in American Indians/Alaska Natives by publishing of peer-reviewed journal articles and through engaging the media in their findings.

Step 6.6 Disseminate lessons learned and evaluation findings.

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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