Aboriginal Diabetes Initiative
Consultation Summary Report
The intent of this Executive Summary is to give an overview of the diabetes
consultation reports based on the work of the Assembly of First Nations
(AFN), Inuit Tapiriit Kanatami (ITK), Métis National Council (MNC),
Congress of Aboriginal Peoples (CAP), National Aboriginal Diabetes Association
(NADA), National Association of Friendship Centres (NAFC), and First
Nations and Inuit Health Branch (FNIHB) Regional and Headquarters personnel.
Consultations were carried out with First Nations and Métis communities,
off-reserve and urban Aboriginal peoples, Aboriginal health care professionals,
First Nations and Inuit Health Branch Regional personnel, and national
level non-Governmental organisations. Although some of the feedback gathered
through the consultations was specific to particular organizations, regions,
and communities, broad themes and common issues can be identified. This
report attempts to summarize those broad themes. The detailed information
compiled through the consultations is not reflected here. However, this
summary document and the richness of information provided in the consultation
reports are intended to be utilized hand in hand. The consultation reports
provide the context for this summary document. The individual documents
are available in various formats from their respective organisations
(information and addresses to access the individual reports are noted
at the end of this document).
Background
It is recognized that diabetes is a significant health concern among
Aboriginal people, with prevalence rates of Type 2 diabetes being 3 -
5 times higher among Aboriginal people than in the Canadian population.
Complications from this chronic disease are serious, and include kidney
disease, cardiovascular illness, blindness, and amputations.
In 1998, in response to the final report of the Royal Commission on
Aboriginal Peoples, the federal government released a document entitled "Gathering
Strength", and indicated the intention "to ensure a greater
focus on prevention, care, and research related to diabetes in Aboriginal
communities". The federal government more explicitly promised new
programming to be delivered though an Aboriginal Diabetes Strategy, in
a document entitled "Agenda for Action with First Nations".
An Aboriginal Diabetes Strategy Working Group was convened, and worked
to develop a framework for the strategy contained within the 1998 report "Background
Paper for the Development of an Aboriginal Diabetes Strategy". It
was agreed that broad consultation was required for feedback on this
report, and to gather information as to how to proceed.
The budget announcement in early 1999 provided $58 million over the
next five years to combat diabetes in Canada. The budget indicated that
surveillance and research will be carried out to find better ways to
prevent this disease and enhance treatment and care. The budget announcement
indicated that this will lead to a better understanding of why diabetes
has become such a serious problem in Aboriginal communities, and what
can be done about it, including an enhancement of services on reserve.
It is important that input from all partners and stakeholders be considered
in deciding how to apportion the Canadian Diabetes Strategy funding between
the Aboriginal Diabetes Initiative, the Canadian Diabetes Initiative,
and the National Diabetes Surveillance System. This report highlights
the findings from recent consultations
Consultation Process
A national steering committee, made up of representatives from the AFN,
CAP, ITK, MNC, NADA, and FNIHB regional and national offices, engaged
in a broad consultation process. Consultations targeted key stakeholders
such as health professionals, community members, Chiefs and Councils,
urban and rural Aboriginal people, NGOs, and the membership or constituents
of the national Aboriginal organizations.
Consultation techniques were varied, individual methods are outlined
below.
- The AFN conducted meetings with Chiefs and the Aboriginal Nurses
Association, consulted at the Health Director level, and administered
the AFN questionnaires in a national survey process as well as in focus
groups and interviews. There was reaffirmation of current thoughts
and confirmation of the themes outlined in the Background Paper
for the Development of an Aboriginal Diabetes Strategy. A meeting
of the traditional healers will be held.
- The ITK prepared A Discussion Paper on Diabetes as it Related
to Inuit in Canada and held a 3 day Inuit Diabetes Workshop
which highlighted that the incidence of diabetes in the Inuit is
low but increasing; actual prevalence is not known. Main efforts
should be placed in prevention and education. Those that have diabetes
have no services, and need more emphasis on care and support. All
information and services need to be translated into Inuktitut.
- Based on a national level focus group, the MNC would like to see
a developmental phase, including a review of successful models in other
countries. More Métis-specific research is needed. Efforts should
be at working to reduce fragmentation of programs; there should be
workers in every community and each province should have a full-time
person dealing with diabetes. It was suggested that a national level
Steering Committee for Aboriginal Health Issues be instituted, advancing
an wholistic view of Aboriginal Health.
- The CAP consultations stressed fairness. More research is needed
as well as collaborative networks to strengthen the epidemiological
data. The CAP survey questionnaire was posted on the WEBsite and key
respondents interviewed offering direction and feedback. A workshop
that was held in March 1999 identified gaps in programming and suggested
better links with health and support services, as well as advocacy
for elders requiring long term care. Surveillance should be a critical
part of the total plan.
- NADA used 3 forums to consult. An environmental scan was conducted
and a resource catalogue developed (currently under final review).
Results showed that 84% of communities did some form of awareness-
raising activity, 56% of respondents were diagnosed off-reserve, while
42% had elders or traditional healers involved with their care. CHRs
had the largest role in health care and support although most communities
do not have support groups. Consultations were held with members of
the Board of Directors, as well as at the Annual General Meeting. The
recommendations in the Background Paper for the Development of
an Aboriginal Diabetes Strategy were supported although there
was question on implementation ('top down' or 'grass roots' driven?).
A task force has been formed to work on the Canadian Clinical Practise
Guidelines; the CDA will work with NADA to add Aboriginal-respective
materials.
- FNIHB Regions found that the level of transfer dictated the regional
consultations. Those that were mainly transferred had reduced capacity
in the Regional offices and had logistical difficulties. Most regions
worked with the Aboriginal groups to coordinate consultations. The
regions used a variety of methods including key informant interviews,
large focus groups, and survey questionnaires. There was support for
all components of the Strategy, but further clarification is needed
on what research refers to.
- FNIHB Headquarters held key informant interviews with members of
the Diabetes Council of Canada and other stakeholders and asked for
input on the Background Paper for the Development of an Aboriginal
Diabetes Strategy. Questions were asked about the member organisations'
abilities, roles, and linkages to other diabetes groups. There was
consensus on the importance of linkages and the need to raise awareness
about the cultural implications in working with Aboriginal people,
with the majority of activities being developed at the provincial,
regional and community level.
Summary Method
The Background Paper for the Development of an Aboriginal Diabetes
Strategy is organized around four cornerstones: Prevention and
Education, Care and Support, Research, and Surveillance. Each of the
consultation reports was reviewed for their content regarding these
key areas, as well as general comments regarding the implementation
of the strategy and funding issues. Comments such as "promoting
cross country skiing and nature trails" or "develop a list
of places where you can get affordable food" were considered to
be too specific for inclusion in this report. Instead, they were captured
in broad summary areas such as "the need to promote physical activity",
and "the need to address access to food".
- Prevention
All groups identified Prevention as a priority area. For the Inuit,
this was a priority area since the prevalence of diabetes among Inuit
people is low, but the incidence is rising. It must not be allowed
to reach the epidemic proportions seen among Aboriginal people in the
south.
In most cases, children and youth were identified as the best groups
to target for prevention activities, through school curriculum programs.
The Kahnawake model was recommended frequently as a model to follow.
The need to involve parents was identified. It was also noted that
it is more difficult to target the urban-dwelling Aboriginal person,
and mechanisms to do so need to be supported.
Screening programs were also supported, although there was a difference
of opinion on the target groups for this type of effort. Some groups
favoured community-wide screening, while others recommended focussing
on children and youth, elders, and pregnant women. The Aboriginal Head
Start program was suggested by some as a mechanism for impaired glucose
tolerance and diabetes screening.
The need for healthy public policy, community development, and support
from Chiefs and Councils were mentioned often by First Nations. Physical
activity and healthy eating are key to preventing and controlling diabetes.
Specific areas to be addressed included: addressing access to healthy,
affordable food; hunter support and community gardens; and the development
of safe walking paths. It was clear that the community must own their
response to diabetes, and that by addressing diabetes, many of the
determinants of health that would lead to a healthy community would
also be improved. The need for healing as Aboriginal people was seen
as a key to addressing diabetes.
The need for resource/education materials was very clear. It was mentioned
that written materials are not as effective as other forms of media.
The radio, videos, and TV were promoted as the most effective ways
of teaching about diabetes prevention and diabetes self-management.
Resources must be available in a number of languages. Another strong
recommendation was having elders and people who are living well with
diabetes act as leaders and speakers in their communities. Community
people teaching community people is a key recommendation.
Finally, promoting the value of healthy eating and activity were clear
priorities as well. A wealth of ways of doing this were identified
in the consultation reports. Some examples included dancing at traditional
celebrations, cooking classes (including traditional foods and recipes),
recipe books, shopping tours, and changing the social attitudes and
values around eating and food preparation.
- Education
Education was also seen as a priority, and went hand in hand with prevention
activities. There is much overlap in this area, and in discussions
regarding care and support.
Responses in this category focussed either on the education needs of
people with diabetes and their families, or on the education and training
needs of health professionals and community members.
There is a need among people with diabetes to better understand how
to use a blood glucose monitor. Training is brief, and often the individual
does not have the monitor for about a month. Without the chance to
practice, much of what they were taught previously is lost.
People with diabetes and their families also need forms of psychosocial
support. To some, a diagnosis of diabetes is like an admission of weakness.
There is a grieving process that goes along with a diagnosis of a chronic
disease like diabetes, and the emotional aspects of self-management
need to be addressed. Elders and traditional healers would be very
important to this process.
As well, family members may not know much about diabetes, and do not
understand why the family menu must change. It was noted that in some
cases, when women are diagnosed with diabetes, they do not change the
family menu because they don't want to deprive their families. Further,
there is no cultural value for exercise; instead activity should be
approached as opportunities to get strong, or opportunities for fun
and socializing.
It was identified that there are fewer health professionals than are
needed in most communities. Their time is already taxed, and there
is no money for professional development. As such, many health professionals
do not know enough about diabetes. An interest has also been expressed
in the need for training in areas such as program development, program
planning, goal-setting, and evaluation. Community health workers are
also an asset in every community, and require training in diabetes
education. There is a high staff turnover, resulting in low stability
and reduced continuity of care.
The need for trained lay persons to help with diabetes education, and
the need to promote people living well with diabetes as role models
were also stressed. This is consistent with community development and
with people learning from each other. The social support component
is also worth noting.
The CDE program is not considered to be the best way of training for
community nurses and community health workers. A training and certification
program in Aboriginal Diabetes is required. The Clinical Practice Guidelines
also need to be simplified and made to be appropriate for use with
Aboriginal people. The need for a diabetes teaching kit, and a flow
chart for how to care for a person with diabetes was also identified.
A clearinghouse for information on programs and educational materials
was identified as well.
- Care and Support
Along with prevention, care and support for individuals living
with diabetes was a significant priority. This was particularly true
with respect to the prevention and early identification of complications
arising from diabetes. Using technology such as Telehealth to its fullest
extent to meet the needs of people in rural communities was identified.
The need for better networking between health professionals was indicated.
Communication between doctors and the nurses who will care for the
person with diabetes needs to be improved. Case management by multi-disciplinary
teams is the best model to follow. Multi-disciplinary teams have been
recommended in the Clinical Practice Guidelines, and operate most efficiently
with good role clarification, and excellent communication mechanisms.
Integration and networking between health and social services would
enhance care and support services. Problems related to coordination
and continuity of care were noted in remote northern communities.
Follow-up and in-home support also needs to be improved. Home care
funding needs to be increased. Access to specialists is difficult.
Care services such as foot care also need to be more available. Partnerships
between home care, hospitals and clinics need to be developed to make
services available in communities.
Support groups were identified as important to communities. Communities
would like to have more support groups, but are not sure how to start
them. Volunteers in communities are important contributors to care
and support. The mental health component of living with diabetes must
be noted, and the need to prevent depression as a result of living
with a chronic illness must be addressed.
Elders can be isolated, and need transportation for medical appointments,
and shopping. Interpreters are also an important aspect of care and
support. Traditional healing practices and the use of herbs need to
be integrated with the Western approach to medicine.
One barrier that was identified for Aboriginal people not living on-reserve
was the issue of coverage for services. This challenge needs to be
addressed in the implementation of the Aboriginal Diabetes Initiative.
- Research
Pure academic research was seen as a low priority. Research must not
be done at the cost of prevention efforts. However, there is a need
for program level research, including needs assessment, program design,
and program evaluation.
Ownership and control of the research among Aboriginal people BY Aboriginal
people was stressed. Aboriginal people need to be active participants
in the research, and hiring for research workers should occur within
the community in which the research is occurring. A peer review mechanism
by Aboriginal people for research proposals was also recommended. NGOs
have a long history relating to research and funding. Partnerships
could be formed with the NGOs for accessing research dollars, and for
assistance and training to develop strong proposals that are necessary
to access funding.
Some priorities for research topics included: diabetes among the Inuit,
program evaluations and helping communities measure change, validation
of the effects of traditional medicines, role of genetics, research
on how complications proceed in Aboriginal people, and the psychosocial
aspects of coping with diabetes.
- Surveillance
The need for surveillance to monitor incidence and prevalence
of diabetes among Aboriginal people was recognized as important. These
are tools for documenting the size of the problem, and based on collected
data, will assist in projecting needs and allocating resources to areas
targeted to be "at risk". However, it was indicated that
this activity should be integrated into the larger system, and be included
in the other areas as well. It was recommended that surveillance be
integrated with the Aboriginal Peoples Survey, the Health Information
Survey, and other databases. Inuit have recommended a surveillance
system capable of collecting information on Inuit nationally, as well
as within the six Inuit regions of Canada. Developing the tools and
providing the hardware and software for surveillance are important
steps.
- Conclusion
The issue of diabetes among Aboriginal peoples requires urgent
attention; the consultation process of the Aboriginal Diabetes Initiative
was an initial step in addressing this critical issue. Implementation
planning will move the Aboriginal Diabetes Initiative agenda forward,
guiding the consultation results into an integrated and coordinated
blueprint for activity.
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