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Volume
6: No. 4, October 2009
COMMUNITY CASE STUDY
A Diabetes Self-Management Program Designed for Urban American Indians
Sarah Castro, MPH; Mary O’Toole, PhD; Carol Brownson, MSPH; Kimberly Plessel,
MS, RD; Laura Schauben
Suggested citation for this article: Castro S, O’Toole M, Brownson C,
Plessel K, Schauben L. A diabetes self-management program designed for urban
American Indians. Prev Chronic Dis 2009;6(4):A131.
http://www.cdc.gov/pcd/issues/2009/
oct/08_0147.htm. Accessed [date].
PEER REVIEWED
Abstract
Background
Although the American Indian population has a disproportionately high rate of
type 2 diabetes, little has been written about culturally sensitive
self-management programs in this population.
Context
Community and clinic partners worked together to identify barriers to diabetes
self-management and to provide activities and services as part of a holistic
approach to diabetes self-management, called the Full Circle Diabetes Program.
Methods
The program activities and services addressed 4 components of holistic health:
body, spirit, mind, and emotion. Seven types of activities or services
were available to help participants improve diabetes self-management; these
included exercise classes, educational classes, and talking circles.
Consequences
Ninety-eight percent of program enrollees participated in at least 1 activity,
and two-thirds participated in 2 or more activities. Program participation
resulted in a significant improvement in knowledge of resources for managing
diabetes.
Interpretation
The Full Circle Diabetes Program developed and
implemented culturally relevant resources and supports for diabetes
self-management in an American Indian population. Lessons learned included that a holistic approach to diabetes self-management, community
participation, and stakeholder partnerships are needed for a successful program.
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Background
Self-management behaviors are key to managing type 2 diabetes and achieving
successful health outcomes. The American Diabetes Association identifies
self-management as the cornerstone of care for diabetes (1), and the Centers for
Disease Control and Prevention state that self-management education is a
critical part of medical care for diabetes (2). Self-management behaviors
include eating healthfully, being physically active, monitoring blood glucose,
taking medications, solving problems, healthy coping, and reducing risks (3).
Self-management increases healthy behaviors (4) and improves
clinical outcomes (4-7).
The American Indian population has a disproportionately high rate of type 2
diabetes. Approximately twice as many American Indian and Alaska Native adults
have diabetes as do non-Hispanic whites, and the problem is increasing. The
prevalence of diabetes in young adult (aged 20-29 years) American Indians and
Alaska Natives increased by 58% from 1990 through 1998, compared with a 9%
increase in the US population as a whole (8). Because diabetes develops in
American Indians at an earlier age, they live with diabetes longer and are,
therefore, at higher risk for diabetes-related complications. American Indians
are 3.5 times more likely than the general population to have kidney disease (8)
and 3.5 times more likely to require lower-limb amputations (9). American
Indians are also more likely to be physically inactive and have an unhealthy
diet (10,11). These behaviors are associated with worse self-reported health
status, even after controlling for socioeconomic status (12).
Little has been written about culturally appropriate self-management
interventions in the American Indian population. Two small, well-controlled
studies showed that culturally relevant lifestyle interventions can improve
diabetes-related behaviors and clinical outcomes (13,14). Missing from these
studies were formal, sustained relationships with American Indian community
members, studies that addressed more than a small subsample of the American
Indian population, and intervention activities that could be implemented in
uncontrolled community settings. We describe the Full Circle Diabetes Program,
which focused on building physical, spiritual, mental, and emotional supports
for diabetes self-management, and discuss implications for others interested in
improving resources for diabetes self-management among urban American Indians.
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Context
In 2003, the Robert Wood Johnson Foundation’s Diabetes Initiative awarded the
Minneapolis American Indian Center (MAIC) a Building Community Supports for
Diabetes Care grant. MAIC, a community center that provides education and social
services to American Indians, partnered with the Native American Community
Clinic (NACC), a primary care clinic, and Wilder Research, the research and
evaluation division of the Amherst H. Wilder Foundation, to develop and
implement a comprehensive program that was relevant to the community, culturally
appropriate, and provided resources to improve diabetes self-management. Both
MAIC and NACC are in the Phillips neighborhood of south Minneapolis, and
their services extend to the entire metropolitan area. Approximately 85% of
clients served by both are American Indians from different tribes.
Beginning in February 2003, a program coordinator from MAIC facilitated
communication among program partners and recruited community members to form a
Diabetes Community Council. The program coordinator was not American Indian but
spent time and effort building trust with community members. She attended
community events, engaged in dialogue with American Indian elders, and
repeatedly demonstrated her interest in their welfare. The Diabetes Community
Council comprised American Indian community members and elders from the
Minneapolis/Saint Paul area, many of whom had type 2 diabetes. The council
represented the community and advised MAIC, NACC, and Wilder Research on program
planning, development, and evaluation.
MAIC called their holistic approach to program development a “circle model”
because of its close relationship to American Indian culture and values. Circles
are ancient symbols of infinity, unity, and wholeness. Their circle model
recognizes that all people contribute uniquely to the survival and vitality of a
community. Therefore, leadership is shared; each person contributes according to
his knowledge and abilities.
Using this approach, council members identified barriers to self-management
by sharing personal stories; these barriers included infrequent blood glucose
testing, poor eating habits, poor physical activity habits, difficulty coping
with diabetes-related stress, and lack of knowledge of self-management
resources. After discussing the gaps in available and accessible resources, the
council worked with the program coordinator to develop activities and services
to complement and expand existing resources. Before the program, no diabetes
services coordinated between MAIC and NACC were offered to community members.
Two key medical staff from NACC attended all the council meetings and consulted
on medical issues as needed. In addition to its role in developing and
coordinating program activities, NACC provided clinical services and monitored
clinical measures of the participants. Together, the Diabetes Community Council,
MAIC, NACC, and Wilder Research created the Full Circle Diabetes Program.
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Methods
From July 2004 through February 2007, a total of 255 adults with type 2 diabetes
participated in the Full Circle Diabetes Program. Participants were recruited at MAIC and NACC; all clients, regardless of ethnicity, were offered the
opportunity to enroll in the program. Participants completed an intake form to
document their characteristics at program entry. In addition, they completed a
lifestyle survey to assess knowledge of resources at program entry, annually,
and at program exit (15). Activities of the Full Circle Diabetes Program
encompassed 4 dimensions: body, spirit, mind, and emotion. Program activities
were developed for each dimension with the needs of the community in mind.
Participants were not expected to participate in all program activities but were
encouraged to participate in those that were most relevant to their
self-management needs. Participation in program activities and services was
tracked. The McNemar Test (2-sided) was used to test for change in knowledge of
resources. Wilder Research provided MAIC and NACC with semiannual evaluation
reports.
Both NACC and MAIC provided activities designed to improve physical health
(body dimension). Diabetes-related clinical indicators were monitored at
quarterly clinic visits at NACC to guide clinical management (data not
reported); at these visits, participants received routine physical examinations,
dietary advice, and screening for depression. MAIC and NACC jointly employed a
diabetes case manager to contact patients, assess their needs, connect them with
appropriate resources, and provide follow-up and support. The case manager also
assisted with referrals to low-cost or free health care services and helped
participants correctly fill out and file insurance forms.
During the first year of the program, exercise classes were offered 4 times
per week at MAIC. As the program evolved, other exercise activities, such as
water aerobics, walking, stretching, and light weight lifting, were also offered
at MAIC and through partnerships with local fitness facilities. Free gym
memberships, physical therapy services, walking groups, and consultations for
home exercise programs were among the options offered. In response to a request
from participants and the Diabetes Community Council, nutritional consultations
were added to assess participants’ diets and develop healthier meal plans that
were realistic for participants with budget constraints.
The spiritual dimension of holistic health was addressed by honoring American
Indian culture and fostering a sense of belonging to something larger than
oneself. For example, NACC clinicians were comfortable with supporting
traditional healers in providing alternative health care for participants who
were interested in or already receiving treatment from these healers. The
Diabetes Community Council honored tradition by offering a blessing before every
council meeting. The meetings encouraged participants to share personal
testimonies, which helped them feel less alone in their challenges and motivated
them to make healthful life changes. Intergenerational events, such as diabetes
health fairs, invited everyone in the community to participate, regardless of
age. These events helped to bring all generations together to learn, have fun,
and celebrate culture. Caregiver ceremonies acknowledged family, friends, and
health professionals for supporting diabetes health.
The Full Circle Diabetes Program offered several opportunities to improve the
mind dimension by increasing participant knowledge about diabetes and
self-management. BASICS curriculum education classes, developed by the
International Diabetes Center, focused on 6 topic areas: introduction to
diabetes, nutrition, managing diabetes, health for a lifetime (full body
health), physical activity, and stress management (16). This 5-class curriculum
was offered through monthly BASICS dinners during the first year of the program.
During the remaining year and a half, two 5-week workshops were offered in place
of the monthly dinners, so that newly diagnosed participants or those with
poorly controlled diabetes could move through the curriculum more quickly. In
addition, monthly diabetes breakfasts gave participants the opportunity to share
a healthy meal and benefit from ongoing diabetes education.
As the program evolved, the Stanford University Chronic Disease
Self-Management Program (renamed Living in Balance) was added as another
educational component (17). The program helped participants learn skills and set
goals to better manage their diabetes and any other chronic conditions. To help
sustain the program, leaders’ training was offered at the beginning of year 2 to
train program graduates to become peer teachers. To be eligible for the leaders’
training, participants had to have their diabetes under control and have strong
communication and listening skills.
Emotional support activities were included in the Full Circle Diabetes
Program to address the emotion dimension and combat depression. For example,
talking circles were informal group gatherings in which participants were
encouraged to share concerns related to diabetes and other topics (18). The
talking circles provided a safe place for people to ask for and receive support
from their peers and to know that others shared their challenges. Lists of
mental health resources were available at each talking circle, and a mental
health counselor was available at NACC to assist with mental health services.
Self-esteem was nurtured by engaging participants in planned outreach
activities, such as presentations at local schools. As they gained skills and
had positive experiences planning and executing these activities, participants
developed the confidence necessary to become advocates for self-management.
Addressing each of the 4 dimensions of holistic health in a culturally
sensitive way was the key to the Full Circle Diabetes Program. Although
activities and services were categorized under a particular dimension,
considerable overlap occurred. For example, services such as case management and
nutritional consultations addressed primarily physical health (body) but also
included educational elements (mind) and emotional support.
Grant funding ended for the Full Circle Diabetes Program in February 2007;
however, many of the systems changes put in place during the program were
maintained. The Diabetes Community Council continues to be active in the
community but has changed its name to Community Health Council and has expanded
its reach to include all health issues. Case management and nutrition counseling
at NACC continues to provide guidance and support to diabetes patients to
improve their self-management.
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Consequences
Entry data are available for 249 of the 255 people enrolled in the Full
Circle Diabetes Program. Most participants were middle-aged women of American
Indian or Alaska Native descent who had at least a high school education
(Table 1). The average time since diagnosis of
diabetes was 9 years, and comorbid conditions were common. Although most
participants had health insurance at some time during the program, many did not
have consistent, uninterrupted insurance throughout the program. Most reported
having a regular personal physician and good support from family, friends, and
the community. However, less than half knew how to access self-management
resources.
Most participants reported taking their medicine as recommended most or all
of the time, but only half tested their blood glucose 1 or more times per day,
and most were not following a diabetes meal plan (Table
2). Although participation in some physical activity was common, less than
one-third met physical activity standards (19).
At program entry, each participant was enrolled in case management.
Participation in other program activities and services was variable
(Table 3); however, 98% of
program enrollees participated at least once in 1 activity or service, and
two-thirds participated in 2 or more.
Diabetes breakfasts and nutritional consultations were the most popular
activities. Seventy-five participants attended BASICS educational sessions, but
on average each attendee completed only half of the lessons. In an effort to make the BASICS classes more accessible, dinner
sessions were changed to workshops, but the workshops had less reach than the dinner sessions.
Although only 16% participated in the MAIC exercise classes, an additional,
unknown number participated in 1 or more of the exercise options that were added
as the program evolved. Because these were held off-site, attendance records are
not available. Attendance at each of the 10 intergenerational events ranged from
8 to 200 people and included both program participants and other community
members. Program participants and other community members participated in
talking circles. Although the data do not show which participants attended each
activity, all dimensions of holistic health attracted participants.
Two-thirds of participants reported that information they learned in the Full
Circle Diabetes Program helped them manage their diabetes. Program participation
of any kind resulted in a significant improvement in knowledge of resources for
managing diabetes (81 matched pairs, P = .04). Additionally, 98% of
respondents reported that as a result of attending Living in Balance classes,
they had made changes in 1 or more of the following behaviors: exercising,
coping with diabetes stress, communicating with their health care provider, and
improving their eating plan.
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Interpretation
The Full Circle Diabetes Program demonstrates that resources and supports for
diabetes self-management can be developed, implemented, and successful in an
American Indian population. Physical, spiritual, mental, and emotional supports
for diabetes self-management were provided through a partnership among a
community organization (MAIC), a health care clinic (NACC), and community
members. Community members not formally enrolled in the program and from the
broader metropolitan area participated in many program activities, which
suggests that the Diabetes Community Council’s goal of offering programs that
fit
American Indian culture was achieved. The Full Circle Diabetes Program developed
successful partnerships and incorporated culture into all aspects of the
program.
The experience of the Full Circle Diabetes Program offers several lessons for
diabetes educators and organizations interested in implementing a comprehensive,
community-supported diabetes self-management program for urban American Indians.
The first lesson is that American Indian culture supports the use of a holistic
approach to diabetes self-management because it emphasizes balance and harmony.
The Full Circle Diabetes Program built on these cultural beliefs by using a
circle model and offering activities in the 4 dimensions of holistic health to
allow participants to choose options that best addressed their diabetes
self-management needs. Previous studies have reported distinct self-management
support preferences among subgroups of participants and suggest that a range of
culturally appropriate supportive strategies should be offered (20,21).
The second lesson is that community participation is critical. The input of
the Diabetes Community Council was essential to the success of the Full Circle
Diabetes Program, a finding that is consistent with the expectations of
community-based participatory approaches (22,23). The council had a vision for
how diabetes self-management could be improved in their community. They helped
design culturally appropriate community-based activities, became leaders for the
Living in Balance classes, led talking circles, suggested intergenerational
events, and participated in numerous outreach activities. The emphasis on
community participation led to a self-management program that reflected and
addressed the needs of the community.
The third lesson is that partnerships provide an opportunity to develop
diabetes self-management programs and services. The Full Circle Diabetes
Program’s 4 main partners — MAIC, NACC, the Diabetes Community Council, and
Wilder Research — brought together a clinic, community organizations, American
Indian elders, spiritual leaders, community members, and an evaluation team. By
combining expertise from each, the program offered a range of complementary
program activities and services, engaged community members in diabetes
self-management, and evaluated the program’s effect. These partnerships were
successful because each partner helped create the program, committed resources
to it, and developed systems and procedures for working together to improve
diabetes care. Participants entered the program from both the community and
clinic because of this system. Sharing leadership resulted in more trust and
strengthened relationships among the program partners because all voices were
heard. Priorities and concerns of each partner were presented at council
meetings, and solutions were considered collectively. The need to build
partnerships that bring together complementary skills and resources is supported
by studies that suggest clinic-community partnerships play a critical role in
diabetes care and self-management (24).
Future work is needed to document that the Full Circle Diabetes Program can
improve self-management behaviors among urban Native American Indians. More
information, including a resource toolkit for developing a comprehensive
diabetes self-management program for urban Native Americans, can be found at www.diabetesinitiative.org/programs/DIMAIC.html.
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Acknowledgments
Support for this work was provided by a grant from the Robert Wood Johnson
Foundation in Princeton, New Jersey.
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Author Information
Corresponding Author: Sarah Castro, MPH, Transtria LLC, 6514 Lansdowne Ave,
Saint Louis, MO 63109. Telephone: 314-352-8800. E-mail:
sbetsworth@gmail.com. At the time of this study, Ms Castro was affiliated
with Saint Louis University, Saint Louis, Missouri.
Author Affiliations: Mary O’Toole, Carol Brownson, Washington University,
Saint Louis, Missouri; Kimberly Plessel, Minneapolis American Indian Center,
Minneapolis, Minnesota; Laura Schauben, Wilder Research, Minneapolis, Minnesota.
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