DIABETES PROGRAMS:

WHAT IS WORKING IN OUR COMMUNITIES?

[Overview of the First Annual NADA Conference]

There is a serious deficiency of diabetes programs
specific to Aboriginal people. On June 1-4, 2000 in Winnipeg
Manitoba, the National Aboriginal Diabetes Association (NADA) held its
first national conference. Its theme was "
Strengthening Our Future"
- very appropriate as many presenters discussed managing the disease
through the use of culturally specific programs that work with
Aboriginal people so that future generations can enjoy a healthier
existence. Judi Jacobs of NIICHRO attended the conference and
gathered information from the presenters. It was encouraging to
hear about programs that worked to help Aboriginal people
minimize their risk of diabetes, but a big concern for many
presenters at the conference was how to develop community-based
programs that include the people most affected. These programs
need to educate about diabetes management but they also need to
allow people to manage their own healing process. CHRs in many
communities across Canada have created and implemented
effective programs designed specifically for Aboriginal people.
The first step in developing effective programs is to realize that
the standard educational approaches that may be effective in
non-Aboriginal communities are usually not successful in
Aboriginal communities.

As an example of a successful model, Dr. Don Voaklander
of Edmonton's Royal Alexandra Hospital feels the Aboriginal
Diabetes Wellness Program has the right approach. Their
program was developed by Aboriginal Elders and medical
staff and is based on Aboriginal philosophy, spirituality and
traditional foods combined with western medical practice. He
explains that this is a crucial factor in guaranteeing participation
from native people:
"Native attendance in standard programs has been very
low. This could be because diabetes information delivery
conflicts with one of the principal values of Aboriginal
peoples: non-interference. The general population is
used to health information being directed to them by
experts in a paternalistic manner. A feature of native
culture is the individual's right to choose to partake
of information. There is no explicit expectation of compliance."


The program's premise is this: Aboriginal people with
diabetes from all over Alberta are guided by Elders through
a four-day program which includes counselling, talk circles,
healing ceremonies, and diet management incorporating
such traditional foods as bannock and wild game. The patients
and their families have the ability to stay on site at Anderson
Hall on the Royal Alexandra grounds for the duration of the program.
The program has a very high enrollment, which bodes well for
the future and the management of diabetes in Aboriginal
communities.
The program involves research that follows patients for three
months and six months after their participation in the Aboriginal
Diabetes Wellness Program to measure the management of
blood sugar levels and the overall quality of life of the 150
participants. If the research proves that the participants are
faring well, this program's approach may be implemented,
or may at least influence Aboriginal diabetes programs nationwide (17).


The First Annual National Aboriginal Diabetes Association
Conference was a resounding success with over 60 presentations
on several different topics pertaining to diabetes and Aboriginal
people, from programs to health and exercise. The following
summary of speakers is by no means exhaustive,
but outlines some of the initiatives and programs
implemented and currently working in communities across Canada.

Delma Peshabo spoke about the Diabetes Resource Centre
in her community. The goal of the resource centre is to reduce
the incidence of diabetes using community-wide and individual
efforts by providing information to manage this disease.
The program's goals are:
-To promote healthy lifestyles
- Effective intervention for early detection
-To empower each individual to take responsibility for his/her own health
and make changes if necessary
-To increase knowledge about diabetes within the community

An active lifestyle is the key to good health, and to increase
and encourage physical activity, Delma spearheads a program
called "
A Walking Awareness" in her community.
The program has these objectives:

1) To promote awareness of the importance of an active,
healthy lifestyle (involves the schools and children)
2) To create awareness amongst Aboriginal people about the
prevalence of diabetes in the community
3) To reduce the incidence of diabetes with an increase in activity
- activity is the key to balance in life

The "10 o'clock walk" happens each Wednesday at the local
school to help children and adults stay active. After each walk
there are fresh healthy snacks for the participants. The walk is
advertised with flyers, posters and newsletters and there are
monthly and weekly prizes for participants to keep interest
high. The successes are numerous: there is a lot of
interest in this event. Delma's goal is to attract even more
adults by having evening walks. The number of walkers
is steadily increasing as walking is a great way to socialize,
and as a result, blood sugar levels are going down. Her
program faces challenges like inclement weather and
getting enough adults involved in the walk.

Elmer Ghostkeeper spoke on behalf of the Aboriginal Diabetes
Wellness Team, Capital Health Authority of Edmonton. His topic
was "Diabetes Management - A Holistic and Traditional Way
to Wellness
" which is a program that began in 1996 at the
suggestion of Elders. The basis of the program is to share
experiences in the circle. It is a four-day program, and it
encourages the design of a life map for health and wellness
for the future. The participants receive spiritual guidance from the
Elders as the first and foremost influence in the program. It is a
culturally sensitive program with seven different language groups.
Its main goal is to provide a very balanced and holistic
approach to diabetes education and management through the
sharing of knowledge and understanding of diabetes.
Because all teaching is done in circles the group is encouraged
to speak freely about hopes as well as fears. These friendly
circles help to develop a healthy lifestyle through self-management
and empowerment.

The program's vision:
To support and promote a balanced and holistic life map
for people living with diabetes
The program's mission:
Emotional, physical and spiritual aspects of one's self working
together to manage diabetes
Program model:
A partnership between Aboriginal wisdom and Western
scientific knowledge

The four-day program has participants live in residence
while partaking in the education. In 1998-1999, 347 people
took part and after six months took a three-day refresher
course to keep their knowledge and skills current. The
program also offers a one-day support program. The
program had an outreach initiative and in 1998-99, there
were 42 community visits with 239 people attending
programs as a result.

Kathy Cardinal also addressed the group on behalf of the
Aboriginal Diabetes Wellness Team, Capital Health Authority
of Edmonton. Kathy described the key contributing factors to
diabetes in Aboriginal communities. The prevalence of diabetes
among our people is three to five times that of non-Aboriginal
communities. Reduced activity and the popularity of
processed foods are a huge reason why the disease has
taken hold in Aboriginal communities. Kathy advocates
a holistic approach involving ceremonies, sacrifices, rituals,
Elders teaching values, smudging, and prayers as an
enhancement to Western medicine.

Kathy asserts that the disease affects individuals, family and
community and she calls it a "responsibility disease" which
develops later in life when people are under stress or when they have more
responsibilities and they "worry themselves sick" over
their lives. Her message is to pay attention to what the body
is telling us and heed its warnings.

In Bill Mussell's talk on "Strengthening Involvement of
Community Membership
," he described ways to increase
community involvement in programs when it comes to diabetes
in Aboriginal communities. His main focus was to explain the
importance of taking charge of one's life. A way to do this is to
create some community-level ownership of the diabetes programs.
When people feel included in the decision making, they work that much
harder to create a disease management system that works for
them. In some communities, people feel that everything is done without
their control and he stressed that we must ask ourselves
if the people feel ownership of community programming.
Ownership is vital for self-government and self-management.
Why have we not felt this sense of ownership before?

-Fear - we like to be followers and not make decisions and have not had
enough practice at being assertive and proactive.
-No Vision - when there is no vision in an organization, staff will
wonder whether anything is getting accomplished. Are we
making an impact? Are we making a difference? Having a
vision means asking yourself: What will life be like down the road?
This is very important when creating job descriptions and helps
shape goals and objectives for an organization.

"We cannot begin to make change in the lives of the
people we are serving until they take responsibility
for their own lives. We must find ways and means to
create a need to know, something that will make a
difference in their lives." - Bill Mussell

So, what can leadership do to create a sense of involvement
for community members?

We must :
- Update our education and training
- Transmit culture to future generations (provide the
opportunity to be heard and tell stories) - the ability to
communicate is a key to change
- Asking questions provides understanding - important
- Take ownership of our community's
data in terms of diabetes
- We must consider all the things that influence the
health of the members of a community such as:

Housing
Employment
Education and Training
Nutrition


- What you do must be results oriented - request
evaluations from participants and accept criticisms as
programs and education grow

- What you do must be sustainable and last over time
and always involve community members

Bill pointed out that most of our education has to do with
our external world, not our internal world - we have to
discover our emotions and feelings and perception.
We must concentrate on the "doing"; we are uncomfortable
talking about tomorrow and the future given the recent history of
Aboriginal culture in Canada. We must ask ourselves:
What will life be like in 30 years? How will our grandchildren live?
We must plan for that and influence these lives NOW. We are
much more comfortable in the past and do not want to deal
with the realities of the day. Grieving and healing will allow
people to control their own lives and that of their families and community.

"We need to discover what it is we know, because only
then can we can make decisions about what we think
we can teach." - Bill Mussell

Following on the notion of ownership, Jocelyn Bruyere's
topic was "
First Nation Ownership. Control and
Access (OCA) Over Diabetes Research: Outcomes of
the Manitoba First Nations Regional Health Survey (MFNRHS)
."
Jocelyn explained that in her community, approximately one person
in every family has diabetes. She gave an example of one woman
in her community who has 13 children and 12 of them now have
diabetes. She provided some data on the prevalence of diabetes:

Age:
The risk of diabetes increases with age such that those who
are 50 and over are 10 times more likely to have diabetes
than those in the 15-24 age group and 3 times more likely than
those in the 25-49 age group.

Obesity:
Individuals with a Body Mass Index (BMI) of 30 or greater
are three times more likely to have diabetes than those with a
BMI of less than 30. (BMI stands for "Body Mass Index," a
relationship between weight and height.)

Education:
Those who have less than a grade 9 education are twice
more likely to have diabetes than those who went beyond
grade 9.

Jocelyn spoke about the recently conducted Manitoba First
Nations Regional Health Survey and explained the importance
of the OCA principle or Ownership, Control and Access. First Nations
need to own their health data, be able to control it and have
access to it at all times. With control of health information comes
the ability to set health priorities specific to First Nations communities -
for the people by the people - to determine content and to evaluate
the impact of strategies and programs.

The Manitoba First Nations Regional Health Survey was valuable
to the Manitoba First Nations Diabetes Strategy and a document
was developed by the Manitoba First Nations Diabetes Committee
entitled "A Call to Action." The "action" referred to is research,
surveillance and evaluation of programs. It also emphasized the
OCA principle.

Brenda Elias discussed the data gathered by the MFNRHS
specifically in terms of diabetes. The data came from 17
communities representative of the 12 councils and the
independent communities with one small and one large
community randomly selected from each tribal council.
Out of a total of 32,030 First Nations people in Manitoba,
1,948 people participated in the survey.
Those surveyed were asked several questions
about diabetes.

This is how the data breaks down:
+ 18 per cent of the entire population surveyed has diabetes
+ northern region showed 17 per cent
+ southern region showed 19 per cent

Prevalence:
+ diabetes was more prevalent among women of all
age groups
+ gestational diabetes was reported by almost 50 per cent
of all females reporting diabetes
+ Women aged 65 and older were twice as likely as men
to have diabetes

Risk factors:
+ diabetics are more likely to be overweight
+ diabetics are three times as likely to report high blood pressure
+ smoking is high among diabetics

Cardiovascular disease risk factors:
+ 40 per cent report only one of these conditions: high BMI,
smoking, or high blood pressure
+ 15 per cent report two or more of these conditions
+ 11 per cent have all three
+ only 7 per cent have none of the risk factors

Education:
Another question in the survey related to whether or
not people had been to a diabetes education clinic or
workshop (effective education) and compared women to men:
+ In the 18-44 age group (men) it was more likely that YES,
they had been to a diabetes education clinic or workshop
+ Among older men (44 and up) it was more likely that NO, they
had not been to a diabetes education clinic or workshop
+ Among older women (44 and up) it was more likely that YES,
they had been to a diabetes education clinic or workshop

Medical Attention:
+ In older age groups, 77-86 per cent of both men and women are
getting check-ups
+ Percentages for the younger population (ages 18-44) are
much lower for both men and women
+ Blood pressure tests had similar statistics as check-ups
with approximately 77-86 per cent of men and women getting
tested, with percentages lower in the younger population

Support for Diabetes: (including doctors, nurses,
nutritional counselors and home support services)
+ 11-16 per cent of those surveyed felt it was only adequate
(this number is much too low)

Where things need to be improved:
+ The general consensus is that much improvement is
necessary in terms of diabetes in Aboriginal communities.
The improvement should be in these areas: education,
awareness programs, eye specialists, home care,
disease prevention, prime care facilities, education on
medications, and kidney dialysis services.

The survey points out:
+ That prevention of diabetes and cardiovascular risk
factors is critical.
+ We need more in-depth analysis of age and sex differences
and risk factors, diabetes education attendance data,
prevalence of gestational diabetes amongst women and age
differences of those affected.
+ Regional analysis is important for reasons such as economy
and racism in different regions.
+ Many people have diabetes and do not know it.

Once again Brenda stressed that surveillance is very critical.
We also must make sure that education changes this epidemic.
First Nations people should have access to their own
health data and control over how it is analyzed to create
programs and develop ways to manage the disease in
culturally specific ways relevant to each community affected.

Costs of Diabetes:
+ Diabetes affects the economy when a whole collective
of people have a certain condition
+ Social and emotional costs
+ Families

Diabetes education is a challenge in some communities
but Solomon Awashish discussed his unique approach:
"
Using Radio to Teach about Diabetes." Radio,
or "talking wire," is a very effective means of reaching
communities because it is very accessible, the least
expensive means to reach the most people, and on his program,
one can put content on the air waves for free. This is a great way
to get information to people despite the lack of funding that
most communities experience when it comes to diabetes.
The local community radio stations are always searching for
content for their programming, and they would welcome a radio
show about diabetes.

In the James Bay region, there are nine Cree communities and
every community has its own radio station. There are three
hours of Cree language programming a day. Solomon
stressed that oral tradition is paramount in First Nations
cultures, therefore radio is an appropriate medium. The use
of our own languages creates ownership and it will be
believed and trusted. It is also one of the only ways to get a message
to many Elders who do not speak English or French.
The biggest challenge in managing diabetes is
changing behaviors and radio is a great way to reach people
who may otherwise not get enough information and education
about diabetes.

To create an effective radio program you must be well prepared,
well researched, and you must have planned your program well
by having production meetings with doctors and translators.
You must know your target audience and have a good format.
A "call-in" or question and answer style is preferred, as it is
good therapy for people to share stories and to help each
other heal. To keep your programming effective, create a
focus group of listeners, and evaluate what they got out of it
with a questionnaire following the program.

In keeping with the notion of getting the word out about diabetes,
Dr. Robert Harris spoke about ways to get information to
communities and how to get people involved with events.
The Cree Diabetes Network has developed several events
including the now famous
Sadie's Walk held this year on
June 19, 2000.

To create a successful and lucrative event, Dr. Harris
offers these tips:

- After brainstorming an event, get the information about it
published in a press release advertising the event.
- Next, write letters inviting important people like the Chief,
the media and other local dignitaries to take part.
- Get the local stores and businesses involved by getting
donations and offering prizes to event participants.
- After the event, create a second press release to say who
attended, how many people took part in the event, how much
money was raised, and what the ages of the participants were.
Also, put this information on the local radio station.

Some examples of successful events are:
- "A Day Without Your Vehicle" with all proceeds to go to
diabetes. Participants must provide a donation to use their
car on that day. This is an excellent event because it
emphasizes physical activity - it is okay to walk!
- Local restaurants serving "diabetes friendly" meals.
This was a very successful event as 4 of 12 local restaurants
participated. All were sold out of meals before supper time
- One of the most impressive and successful events was
organized by the Cree youth - "Bringing Our People Home."
For this event, Cree youth did a 2 ½ month walk - a long walk
for a good cause - and raised $325,000 for people who have
to travel far away, sometimes eight hours or more for dialysis treatment.

Dr. Harris stressed the need to expand the network to include
youth and all ages because with many people involved in the
Cree Diabetes Network, many ideas flow to help raise awareness
about this disease.

To provide more insight into Cree initiatives for diabetes
education and management, Ashley Iserhoff talked about
how diabetes has been managed by the government for his
nation and how these policies degrade First Nations people
by not addressing issues pertinent to them. He explained that
traditional sources of sustenance once came from the land,
but now these natural habitats have been destroyed, hunting
territories have shrunk and forests have been depleted. He
feels that hunting and trapping are essential to survival and
that having and relying on these skills will help us overcome this
devastating disease.

Ashley described how members of more remote communities
have to live off reserve to get dialysis treatment: no local
treatment is available to some people afflicted with diabetes.
In 1999, the Cree Nation Youth Council, and a hunter and trapper,
James Alfred Gunner, decided to journey through the Cree
communities to raise awareness about the difficulty people
face when they have diabetes and the fact that many cannot even
remain in their own homes to receive treatment. The initiative
was called "
Bringing our People Home" and a total of
$500,000 was raised to create a dialysis clinic for the inland
and remote communities to bring community members closer
to their homes. Ashley showed a video (also aired on CBC)
to demonstrate how the journey touched and healed the hearts
of many people. "Bringing Our People Home" proves that youth
have the ability to inspire many people.

Ashley introduced Minnie Wapachee-Bosum, who
received huge applause as the youth who completed the
whole journey. She discussed her personal experiences and
why she became involved in the journey: she wanted to do it
for her father who has diabetes and several other diseases.
The journey really helped her by emphasizing the notion of
going back to the land for personal meaning and growth as
her ancestors did.

Minnie gave the group some more background on the situation
in the Cree communities. There are nine Cree communities with
five on the coast of James Bay. More and more, diabetes in
these communities causes cases of kidney failure and the
need for dialysis treatment, which must take place in the inland
communities, far away from home for people in the coastal
communities. Some of those who need treatment must be
away from home 75 per cent or more of the time in order to get
appropriate care. On February 1, 1999 James Alfred Gunner
and 15 youth and a group leader set out to cover 1,300 kilometres
through the Cree nations. By April 9, 1999, the group had grown to
68 people at the finishing line. Minnie described the key factors as:
- raising awareness while at the same time raising funds for
dialysis machines;
- practicing traditional pursuits; and
- focusing on healing from drug and alcohol abuse.

*Emma Saganash of CBC-Montreal made a video of the
Cree journey "Bringing Our People Home" and it is an inspirational record of this event.

OTHER DIABETES PROGRAMS AND
SERVICES SPECIFIC TO ABORIGINAL PEOPLE

Evelyn McLeod-Chevier explained the role of the Lawrence
Commanda Diabetes Resource Centre. The funding for
the Resource Centre comes from the Diabetes Health
Network, a branch of the Ministry of Health of Ontario.
Some of the funding also comes through Nipissing First Nations.

Components of the program are:
-Individual diabetes education
-Diabetes Resource Centre

The Diabetes Resource Centre has a drop-in centre that
promotes a healthy lifestyle through the use of posters,
literature and pamphlets on diabetes aimed at individual and
community-wide education. The centre advocates early detection
and empowerment and ownership of health and increased
knowledge in communities.

A psychologist, a mental health worker, an addictions worker,
a teen counsellor, and drug and alcohol prevention workers are all
available as resources at the centre. Traditional healers come in and use
the medicine wheel in their approach to education.
Their educational style involves program planning, healthy
lifestyle promotion, classroom presentations, and a monthly health
newsletter. The main focus of the centre is to encourage self-management
and empowerment. It offers a setting that is removed from hospital-like
surroundings and proposes less preaching and more interactivity with the
community members, which is a very balanced approach.

Doreen Beauchamp of Yellowquill College in Manitoba offered
a perspective on diabetes education at the college level that may
eventually be an accredited program. The program is called the
"
First Nations Diabetes Training Program" and it began
several years ago in Manitoba. Another organization asked
Doreen to come up with a program to help
promote diabetes awareness in local communities, help
people understand the disease better and find ways to
manage and cope. Not surprisingly, there was no funding
to implement it then, but now the program runs, albeit with a
price tag. The program was put together by doctors and
other professional people as well as First Nations advisory
groups. The relative costs of the program are low but they
must be charged, as funding is still very limited or not available at all.

The program boasts an enrollment of 10 students right now
and has been running since February 2000. The
students are from Southern Manitoba and every student but one
is a Community Health Worker (or Community Health Representative).
The lone student who is not working in these professions has
diabetes himself. He is educating himself so that he can bring his
knowledge home to educate his community.

The main thrust of the program is to provide information,
knowledge and equipment that the CHWs and CHRs need
to work with others in the community and on a professional
level with diabetes educators already working in the community.
The program is set up in modules so that should students require
it, they can come in for a certain number of weeks per month
and do not need to devote solid months to their education
if they cannot do that.

WHAT THE PROGRAM CONTAINS

Overview: symptoms, types of diabetes, personal
care techniques (skin, teeth and feet), speakers (doctors
and other professional workers), exercise program,
impact on family, nutrition, and preparing healthy meals.

Planning a community diabetes program: How do
you do a presentation in a community? How do you get children involved?
These are very important questions for planning a program.

Motivating the community about diabetes:

How do you get people involved? How to get people to learn
about it and get out of denial?

In the future, Doreen hopes to put the "First Nations Diabetes
Training Program" on the Internet and wants the course
to be available as a correspondence class. She stressed
that anyone can take the program; the students do not need
to be First Nations or from Manitoba. Doreen's group can
come onsite to deliver the program to a group and the only
prerequisites are good reading and research skills as there
will be tests. She wants to have the course accredited
eventually so that it can be used in conjunction with other
programs and education as part of a diabetes certification.
For more information about the program,
please call (204) 953-2800.

CONFERENCE OVERVIEW
The following is an overview of some questionnaires used for
feedback on the First National Conference on Diabetes and
Aboriginal Peoples hosted by NADA:

1) Why are people coming to the NADA conference?
Most respondents said they were involved in Aboriginal Health in
some capacity (for example as CHRs, nurses, doctors or nutritionists).

2) What was the overall feeling about what was learned
at the conference?

Overall, respondents were pleased with information and
workshops.

3) What could be improved at the NADA conference?
- Many respondents felt the sessions were too rushed, too
short, and that generally, more time was needed. NADA
acknowledges this and the need to ensure that scheduling
works out better in the future; perhaps at future conferences
there may be fewer workshops for dissemination of information.
- Many people were disturbed by interruptions such as
ringing cell phones.
- Participants wanted more information to take away with
them such as copies of the speaker's notes and overheads.
NADA will make an effort to put this information together.

4) Other general comments:
- Loved Chief Simon Lucas as a speaker - he spoke about
his life and about discipline.

5) Important points from other speakers:
- Diabetes is not in our gene pool - it is about what we eat
and how we live.
- Overall, more organization will be necessary and some
speakers did not show up. Apologies from the NADA board.
- Ideas presented at the workshops were excellent, timely,
thoughtful and pertinent and really addressed the reasons
people came: to learn about diabetes and to learn how
to educate others.
- Communities must own their programs and services;
change comes from within the person.