... Empowerment - International Diabetes Federation

G30956 

Strength in Knowledge ... 

DIABETES 

VOICE 

Bulletin of the International Diabetes Federation 

... Empowerment 

Understanding ... 

Special Edition 2001 

Spread the Word ...

© International Diabetes Federation 2001 

The mission of the International Diabetes 

Federation is to work with our member 

associations to enhance the lives of people 

with diabetes. 

www.diabetesvoice.com 

Editorial Board 

Editor-in-Chief 

Ms Leena Etu-Seppälä 

Finnish Diabetes Association 

Kirjoniementie 15 

FIN-33680 Tampere 

Finland 

tel: +358 3 286 0220 or +358 50 561 1105 

fax:+358 3 360 0462 

leena.etuseppala@diabetes.fi 

Managing Editor 

Ms Kristina Hawthorne 

Kirchheim Publishers & Co 

Kaiserstrasse 41 

D-55116 Mainz 

Germany 

tel: +49 6131 960 7031 

khawtho277@aol.com 

IDF Editor 

Ms Delice Gan, Belgium 

delice.gan@idf.org 

International Editor 

Dr Frank Vinicor, USA 

fxv1@cdc.gov 

Scientific Editor 

Prof Robert Heine, The Netherlands 

French/Spanish Subeditor 

Ms Stefania Sella, Belgium 

stefania.sella@idf.org 

Advisory Board 

Prof Sir George Alberti, UK 

Prof Pierre Lefèbvre, Belgium 

Dr Abdulrahman Salim Alkuwari, Qatar 

Dr Warren Lee, Singapore 

Prof Hajera Mahtab, Bangladesh 

Prof Massimo Massi-Benedetti, Italy 

Prof Adolfo Pérez-Comas, Puerto Rico 

Dr Kaushik Ramaiya, Tanzania 

Mr Brian Wentzell, Canada 

Publisher 

Mr Manuel Ickrath 

Kirchheim Publishers & Co 

Layout and Advertising 

Ms Kristina Hawthorne 

Since 1736 

This publication 

is also available 

in French 

and Spanish 

PRESIDENT’S VIEW 

3 An Individual Decision 

Sir George Alberti 

EDITORIAL 

5 Successful Self-Care: The 

Best Sign of Empowerment 

Leena Etu-Seppälä 

FEATURE 

6 Empowerment: 

A Matter of Choice 

Axel Hirsch and Susan Woods-Büggeln 

HEALTH POLICY 

11 New Roles in Diabetes Care 

Martha Funnell 

CARE AND MANAGEMENT 

14 Becoming Experts 

Alice Jørgensen, Inge Kristiansen and 

Grete Kirketerp 

19 Helping People with 

Diabetes: A Rewarding Task 

The PUMCH Diabetes 

Education Centre in China 

Li Wenhui 

ECONOMICS 

25 Self-Care: An Important and 

Cost-Effective Investment 

Tero Kangas 

RESEARCH 

30 Combined Study Reveals 

Gaps in Diabetes Therapy 

Kristina Hawthorne 

LIVING WITH DIABETES 

32 Children Reaching Children: 

The Diabetic Counsellors 

in Training 

Nana Masike, Siobhan Kotze 

and Sue Leuner 

38 Listen to a Voice 

Bibi Hølge-Hazelton 

DIABETES ON THE WEB 

43 Canadian Diabetes 

Association’s Best 

Information Provider 

Michael Lund 

45 German Website: 

A Stamp of Quality 

Thomas Baehring, 

Melanie Steppenfeld and 

Werner Scherbaum 

IDF UPDATE 

48 Empowerment and How It 

Can be Implemented: The 

Role of Diabetes Associations 

Bjørnar Allgot 

Diabetes Voice • Volume 46 • September 2001 • Empowerment 1

PRESIDENT’S VIEW 

An Individual 

Sir George Alberti 

Decision 

This issue of Diabetes Voice focuses on the very 

important issue of empowerment. In some ways 

this has become a buzzword, but does of course 

focus on a very important aspect of diabetes care. 

When I first started working in diabetes (nearly 40 years 

ago!), it was unthinkable by both patients and 

professionals that patients would modify their own 

treatment. Indeed if they did, this led to a gentle but firm 

reprimand! 

The big breakthrough came at the end of the 1970s when 

it was shown that patients could use blood test strips to 

measure their own blood glucose. This revolutionized 

diabetes care – together with the introduction of diabetes 

nurse educators. 

One finding that made an enormous impression on me 

was in a study where we compared the effect of using 

regular urine testing, blood testing with a meter, and 

blood testing with visual reading of the strips on blood 

glucose control. There was a three-month initial period 

when all patients received education whilst still using 

urine tests. The biggest improvement in control came 

in this first phase and only minor changes later. The 

conclusion, of course, was that paying real attention to 

patients and giving them education about diabetes was 

vital, and more important than the method used to 

check control of their diabetes. 

The world has moved on in the last two decades. We now 

accept that diabetes education is a key component of 

good management of chronic diseases. But this is still not 

real empowerment. In many cases, the professional 

remains dominant. We are now undergoing the next 

stage – putting real power in the hands of the person with 

diabetes. The more the people know about diabetes, the 

greater their ability to manage it in a flexible way, 

allowing more freedom on a day-to-day basis. While the 

person with diabetes may not be able to lead an entirely 

normal life, it is now a lot better than it was in the past 

when there were no tools to achieve self-control. 

So what is the role of the doctor and the specialist nurse? 

It is to guide, to encourage and to advise – not to dictate. 

This requires time and in many parts of the world 

professionals do not have time as there are too few of 

them. It is easier then to dish out pills and instructions 

rather than to explain and to hand power to the person 

who is consulting you. In such cases, patient groups can 

help each other. In the UK, the concept of the ‘expert 

patient’ has been developed and will undoubtedly help. 

One should also remember that not every person with 

diabetes wishes to be ‘empowered’– but whether he or she 

wants to or not should be the individual’s choice. 

My final comment is to point out strongly the truism that 

not all parts of the world are the same. What is 

appropriate in northern Europe may not be appropriate 

in South America; not all cultures necessarily welcome or 

encourage empowerment. It does, however, seem a 

sensible and obvious route to follow and IDF, through its 

member associations and Regions, will certainly promote 

the concept and assist those who wish to follow this route. 


EDITORIAL 

Successful Self-Care: 

The Best Sign of Empowerment 

Leena Etu-Seppälä 

There are many ways to describe empowerment. 

No matter what words are used, the final result 

is the same: improved quality of life and 

successful self-care, whereby the person with diabetes has 

the main responsibility, with full support provided by the 

healthcare team. 

What sounds simple in theory is not always as easy in 

practice. The key elements for empowerment – diabetes 

awareness, education and training, equipment and 

supplies and the support of healthcare providers – are 

partly or totally lacking in many developing and even in 

developed countries. We still have a long way to go but 

the process has clearly started and will reach both people 

with diabetes and healthcare providers. 

How can the empowerment process be measured and 

evaluated? There are many concrete factors which show 

the success of self-care; HbA1c, complications and body 

mass index, for example. However, one of the most 

essential tools to measure empowerment are surveys 

evaluating patient satisfaction. These surveys have 

become recently popular for assessing changes in 

treatment and their outcomes and measuring the 

effectiveness of education. An expert in this area is Dr 

Claire Bradley, UK, who has developed a highly-effective 

method for evaluating patient satisfaction which has been 

used already in many countries. 

The National Diabetes Programme in Finland recently 

implemented a study on patient satisfaction covering over 

2000 people, the answers of which will be analyzed by the 

end of this year. In addition to the questionnaires, 100 

people with diabetes in all age groups have also 

undergone a personal interview. The preliminary 

outcomes of the interviews show that most of these 

people are satisfied with their diabetes care in general, but 

not nearly as satisfied with their self-care. They recognize 

their own role in diabetes care and the need of more selfdiscipline 

and effort, especially in terms of diet, selfmonitoring 

and foot care. The people interviewed also 

emphasized that their quality of life improved with 

good glycaemic control and support from their 

families and healthcare providers. 

The factors that produced most satisfaction in the 

relationship between people with diabetes and healthcare 

providers were friendly, professional support and 

cooperation, continuous patient-doctor relationships, 

time for discussion, interest shown by the professionals in 

care as a whole (not only HbA1c and blood glucose 

monitoring) and the possibility for on-the-spot telephone 

consultation. In self-care the biggest problems faced were 

inadequate glycaemic control, lack of motivation both in 

healthy eating and in self-monitoring, overweight and a 

general lack of knowledge and skills in diabetes care. 

These outcomes confirm that the barriers for real 

empowerment still lie in basic factors, even in developed 

countries. This special issue, however, shows that there is 

a strong willingness among both healthcare providers and 

people with diabetes to change the world of traditional 

diabetes care. 


A Matter of C 

Empowerme 

6 Diabetes Voice • Volume 46 • September 2001 • Empowerment

FEATURE 

nt 

hoice 

Axel Hirsch 

Susan Woods-Büggeln 

There has been an 

enormous change over 

the last 30 years in 

diabetes care and 

education in Germany 

and most of western 

Europe. Nowdays, 

feelings of frustration 

have decreased for 

both healthcare 

professionals and 

people with diabetes, 

as it is finally 

becoming recognized 

just who is responsible 

for what. 

In the 1970s, diabetes 

treatment in western 

Europe was ‘law’. The 

lifestyles of the people 

affected were not considered, 

nor were they given the 

knowledge and skills 

necessary to adapt their 

therapy to the changing 

needs in their life. 

Unpopular lectures in 

diabetes clinics were given to 

large groups, instructing the 

participants on how to live 

healthily and abstain from 

things they liked. When 

outside the hospital, many of 

these people could be found 

sitting in cafés, talking and 

enjoying cakes they had just 

been told not to eat. 

Human Element 

Brought into Modern 

Diabetes Care 

In the eighties, new forms 

of education developed. In 

Germany, for example, 

physicians, recognizing that 

lectures did not tend to 

work, began teaching 

diabetes therapy to smaller 

groups of 10 to 12 people. 

The German Diabetes 

Society established a oneyear 

training course for 

nurses and dietitians to 

become diabetes educators, 

previously the sole duty of 

physicians. They were 

taught a lot more about the 

lives of people with diabetes 

and their problems with 

self-care. They also learnt 

how to listen. 

A growing number of 

hospitals started to employ 

these educators and 

developed a form of 

structured education 

programmes in which inpatients 

could learn 

everything they needed 

towards good diabetes selfcare 

within one to two 

weeks. For the first time 

there was a specialized 

diabetes team treating, 

educating and working in 

close contact with their 

patients. It was these 

particular programmes 

which initiated and 

developed the modern and 

patient-oriented diabetes 

education and therapy we 

know today in Germany. 

Lifestyle Considered 

for First Time 

Still, in most of these 

programmes only standard 

therapies were 

recommended, with little 

control being given to the 

participants after leaving the 

clinic. Some more openly 

refused to do what was 

recommended. However, by 

talking about their 

experiences in groups, some 

began finding out how to 

adapt the strict therapeutic 

rules to their life without 

compromising their therapy. 

They met in self-help 

groups, started asking 

questions and looked for 

educational settings which 

offered them more freedom 

and flexibility. They insisted 

on their wishes being taken 

into consideration. 

There had always been, 

however, some doctors who 

knew that therapy should 

be matched with the lives 

of people with diabetes. 

Discussion had grown 

about the quality of life of 


especially with the new 

kinds of treatments and 

options being made 

available, for example, 


FEATURE 

intensified insulin therapy 

and pump treatment. 

The 1989 St Vincent 

Declaration set quality of 

life as one of the desirable 

goals in diabetes therapy 

and that people should 

have a similar quality as 

those not affected by 

diabetes. Diabetes 

educators began talking 

about finding a therapy for 

the individual person by 

collaborating with patients. 

A Common 

Misunderstanding 

When the empowerment 

approach made its way from 

the United States to Europe, 

however, there was still a lot 

of scepticism, especially on 

the part of the physicians. 

Could healthcare 

professionals trust people 

with diabetes to decide for 

themselves as to how they 

wanted to live with their 

condition? Could physicians 

let go of their former 

responsibilities? What would 

happen if they stopped 

giving orders and checking 

for levels of compliance? 

Furthermore, physicians 

then questioned whether 

people with diabetes really 

did want to make their own 

decisions and take charge of 

their diabetes therapy 

themselves, at all. This was 

In today’s model of care, the professional listens, offers information, skills and expertise. 

The person with diabetes leads the diabetes team to find a self-therapy compatible with 

his or her personal needs. 

a common 

misunderstanding about the 

notion of empowerment 

which still holds today. 

The empowerment 

approach starts from the 

premise that people, by 

their very nature, want to 

manage their own affairs. 

However, the extent of this 

drive obviously depends on 

the individual’s knowledge 


FEATURE 

and previous experience. A 

slave, for example, would 

not normally be expected 

to be empowered, just as 

people who were never 

given control cannot be 

forced to take charge. 

Empowerment is an offer – 

an invitation to participate 

and manage one’s own 

affairs. If a person tells the 

healthcare professional that 

he or she cannot make a 

decision about his or her 

therapy and doesn’t want 

to, then this too is a 

decision and a right. The 

healthcare professional can 

then go ahead and make 

the decisions and show the 

person with diabetes how 

to implement them step by 

step. 

Roles Clearer between 

Healthcare Professionals 

and Patients 

As greater attention is 

focused on quality of life and 

the role of empowerment, 

professionals are increasingly 

questioning their right to 

interfere with the life of 

people with diabetes by 

giving orders and 

recommendations. They 

have begun to request 

training in communication 

skills. 

Empowerment and selfmanagement 

have become 

an intrinsic part of all 

professional training 

programmes for diabetes 

educators and physicians. 

Feelings of frustration 

have decreased as the role 

of the healthcare 

professional and patient 

have become more clear. 

The professional listens, 

offers information, 

training skills and 

expertise. The person with 

diabetes leads the diabetes 

team to find a self-therapy 

compatible with his or her 

personal needs. 

People with Diabetes 

Now Individualizing 

Their Therapy 

In Germany today, a 

growing number of people 

with type 2 diabetes, 

especially those on 

insulin, are practising 

intensified therapy while 

finding ways to reduce the 

rigidity of their therapies 

and to individualize 

regimes. Intensified 

therapy also now attracts a 

large proportion (over 80 

percent) of those with 

type 1 diabetes. 

People with diabetes are 

now finally getting the 

same respect as others for 

their way of life, which 

they have so long 

deserved. They are no 

longer only forced to 

change their lifestyle (lose 

weight, be more physically 

active), but are given help 

to find their own ways of 

managing their condition. 

Multi-Disciplinary 

Care Leads to Better 

Understanding 

Today’s setting of German 

clinical diabetes care 

usually includes a team of 

doctors, diabetes educators 

and sometimes a 

psychologist. This is, in 

fact, an ideal combination 

because people with 

diabetes then have access 

to a professional for every 

aspect of his experience. It 

works best, however, if 

they work in close 

cooperation and do not 

divide the patient’s 

experience up into their 

own single disciplines. 

If organizational 

structures allow time 

for team meetings, 

preferably daily during 

the education programme, 

information from the 

various viewpoints can 

be pooled in order to 

come to a better 

understanding of the 

patients. This can, in turn, 

help them to cope with 

what can sometimes seem 

an overwhelming 

experience. 

This unique setting also 

provides the team with 

the opportunity to get to 

know and understand 

patients as whole people. 

Team members can listen 

to what the patients 

think about diabetes and 

its therapy, where they 

have problems and what 

they wish to change. 

They can see what the 

patients do and how they 

handle decisions about 

therapy. They can 

register how the patient’s 

blood glucose behaves 

under reasonably 

standardized conditions, 

even during the night. 

Therapy No Longer 

Just a Matter of 

Measurements 

Diabetes education no 

longer consists of just 

blood glucose values or 

units of insulin, but of 

the people themselves 

and their experience of 

diabetes and therapy in 

the context of their own 

lives. 

In-patient diabetes 

education provides the 

person with diabetes with 

the ability to make 

choices. The aim is to 

increase the breadth of 

these choices and the 

flexibility in making 

them. 


FEATURE 

Today’s setting of diabetes care usually includes a team of 

doctors, diabetes educators and a psychologist. 

Although such structures 

of healthcare are 

resource-intensive, 

recent follow-ups of 

people with diabetes 

who have participated in 

these programmes show 

very good metabolic 

outcomes and an 

improved quality of life. 

This reflects the 

programmes’ effectiveness. 

Years of Development 

Threatened by 

Legislation 

Many years of effort 

through practical 

experience and clinical 

application has been put 

into establishing today’s inpatient 

diabetes education 

system in Germany. We 

now enjoy a wellestablished 

and dynamic 

structure of education, 

satisfactory to both 

healthcare professional and 

patient. 

However, this very 

process, which has taken 

over 30 years to develop, 

is now under serious 

threat due to changes in 

the national 

reiumbursement system 

for people with diabetes. 

Structured education 

programmes, such as the 

one illustrated in this 

article, will no longer be 

supported by public 

medical insurance, forcing 

newly-diagnosed people 

with diabetes out of the 

hospitals as quickly as 

possible to seek their 

education elsewhere. 

Although the majority of 

people with type 1 

diabetes have participated 

and benefitted from the 

education programmes, 

surveys have shown that 

only 20 percent of people 

with type 2 diabetes have 

done so. Those who have, 

however, have yielded 

positive results. 

In light of the true status 

of people with diabetes in 

Germany, clearly shown 

on page 30 in the 

Research section of this 

issue, the planned 

restructuring could have 

disastrous effects on 

outcomes. 

People with diabetes will 

be hospitalized, not for 

education and 

consultation on 

preventative therapy, but 

for the treatment of endstage 

complications. This, 

in turn, will do nothing 

for the cost of healthcare 

– already a serious strain 

on the national budget. 

Dr Axel Hirsch is Clinical 

Psychologist in the 

Department of Diabetes 

and Metabolic Disorders 

at the Bethanien Hospital, 

Hamburg, Germany. 

Ms Susan Woods-Büggeln 

is Clinical Psychologist in 

the Diabetes Centre at the 

Medical Clinic in the 

Christian Albrechts 

University, Kiel, 

Germany. 


HEALTH POLICY 

New Roles in 

Diabetes Care 

Martha Funnell 

Empowerment is a philosophy that 

recognizes the fundamental right of 

people with diabetes to be the primary 

decision makers in the management of 

their condition. It represents a more 

compatible model of care and 

education needed for a self-managed 

illness such as diabetes. 

© Roche Diagnostics 

As a philosophy, 

empowerment 

guides interaction 

between healthcare 

professionals and people 

with diabetes, be it for 

care, education 

or both. Embracing the 

empowerment philosophy 

requires healthcare 

professionals to practise 

in ways that are consistent 

with this approach. 

Empowerment is not a 

technique or a strategy, 

but a view of how care 

is provided. This often 

requires a shift in the 

relationship between the 

healthcare professional and 

the person with diabetes, 

whereby new roles are 

formed. 

The traditional relationship 

between patients and 

healthcare professionals was 

based on models taken 

from the care of acute 

conditions. The role of the 

hospitalized patient was to 

be cared for and the 

healthcare professional was 

to make the decisions and 

be responsible for the 

outcomes. However, 


HEALTH POLICY 

attempts to function 

within these old roles are 

problematic in terms of 

diabetes care and 

education. Chronic 

illnesses, like diabetes, 

are primarily cared for 

by the people who 

experience them, not by 

the healthcare 

professionals. When roles 

more suitable for self-care 

illnesses requiring a high 

level of self-care are not 

created, both patients and 

healthcare professionals can 

often become frustrated 

and disappointed with the 

resulting negative 

relationships and poor 

outcomes. 

More Appropriate 

Roles for Patients and 

Healthcare 

Professionals 

Both healthcare 

professionals and patients 

often bring role 

expectations to their 

interactions based on 

traditional views of 

healthcare – the 

paternalistic/maternalistic 

doctor giving care to the 

powerless and helpless 

patient. However, when 

expectations reflect the 

philosophy of 

empowerment, a shift 

occurs so that both 

patients and their carers 

assume new roles. 

People with diabetes are in charge of their own lives. They are 

responsible for the outcomes of their treatment. They can only 

achieve this goal, however, if equipped with the right tools! 

These roles are based on 

collaborative relationships 

where the person with 

diabetes and the 

healthcare professional 

cooperate as a team. 

Healthcare professionals 

are unable, however, to 

change their roles unless 

the person with diabetes 

does so as well. Both must 

be prepared to assume 

new roles. 

The Healthcare 

Professional’s Role as 

Coach and Supporter 

For healthcare 

professionals, the first step 

is to clarify the 

relationship with the 

patient. What do 

healthcare professionals 

believe their role to be? 

What does the healthcare 

professional expect of the 

patients? What do the 

patients expect of the 

healthcare professionals? 

Collaborative care is 

established by a patientcentred 

environment, 

where the patients’ 

concerns and goals are the 

focus of care and 

education. The 

collaborative relationship 

begins with a discussion 

about the importance of 

the patient’s role in the 

care of their diabetes and 


HEALTH POLICY 

their beliefs about their 

role. Healthcare 

professionals need to 

explain their role as a 

coach, facilitator and 

supporter. 

Healthcare professionals 

must relinquish their 

traditional beliefs in 

concepts such as 

compliance and adherence 

and learn to respect the 

patients’ right to make 

their own choices. By 

providing expert care, 

education and the benefit 

of experience, healthcare 

professionals meet their 

responsibility. 

Education in Self- 

Management Key to 

Establishing New Roles 

Self-management 

education is the key to 

establishing new roles 

and collaborative 

relationships. Education 

provides people with 

diabetes with problemsolving 

skills. This assists 

them in assuming an 

active role in their own 

care. 

People with 

diabetes need to 

understand that their 

condition is serious, that 

it must be self-managed 

and that it is a personal 

responsibility. Informed 

decisions and wise choices 

must be made on a daily 

basis. 

The educational process 

includes information 

about diabetes 

management, options for 

treatment and their costs 

and benefits, how to set 

goals, obtain needed 

support and overcome 

barriers. Although the 

content for much of this 

education is the same as in 

traditional care and 

education, the purpose 

differs. The goal is to help 

people with diabetes make 

informed choices, not to 

force behavioural changes. 


Assume Responsibility 

for Outcomes 

It needs to be emphasized 

that healthcare 

professionals cannot 

change their roles unless 

people with diabetes do so 

as well. People with 

diabetes must 

communicate about their 

feelings, and provide 

information on their 

values, needs and abilities, 

and actively work with 

their healthcare 

professionals. 

This sort of collaboration 

requires that all members 

of the team actively 

participate and are equally 

valued. Instead of the 


taking sole responsibility 

for decisions and 

outcomes, as in the 

traditional acute-care 

model, the person with 

diabetes should assume 

this role. 

Working towards 

important goals, 

recognizing their role in 

the team and becoming an 

informed decision-maker 

are all things that people 

with diabetes can do to 

become an effective 

collaborator. 

Old Habits Die Hard 

People with diabetes and 


will encounter barriers 

and challenges as they 

attempt to make changes 

in their roles. Healthcare 

professionals are used to 

setting goals and solving 

problems. People with 

diabetes will often expect 

precise answers or may 

not understand the need 

for their involvement in 

the daily care of their 

condition. 

The complexity of the 

physical and psychosocial 

issues people with diabetes 

experience may cause 

healthcare professionals to 

feel overwhelmed. Some 

may not want not change 

their current roles at all, 

or may feel that this new 

approach would take up 

too much in the way of 

additional time or 

resources. 

Patient-Centred Care 

More Satisfying 

Patients are more satisfied 

because the empowerment 

approach to care meets 

their needs. This, in turn, 

is more rewarding for the 

healthcare professional. 

When people with 

diabetes work to achieve 

self-selected goals, 


no longer have to try to 

motivate them to achieve 

provider-selected goals. As 

patients are better able to 

achieve self-selected goals, 

which address their own 

needs and concerns, 

outcomes improve. 

Ms Martha Funnell 

is Director for 

Administration at the 

Michigan Diabetes 

Research and Training 

Center in the Division of 

Endocrinology and 

Metabolism, Department 

of Internal Medicine, 

Ann Arbor, USA. 


EDITORIAL 


Becoming 

Experts 

Alice Jørgensen, Inge Kristiansen and Grete Kirketerp 

Increasing the knowledge 

of people with diabetes 

gives them motivation 

and promotes better 

diabetes control. This, in 

turn, enhances quality of 

life and delays, if not 

totally prevents, the onset 

of complications. The 

Danish Diabetes 

Education Centre, opened 

in Odense, 1993, does just 

that, by providing 

teaching and assistance to 

people with diabetes and 

their friends and families. 

The centre educates over 

500 people in total 

each year. 



EDITORIAL 

The Danish 

Diabetes 

Education Centre 

is part of a leading 

diabetes research unit at 

the Odense University 

Hospital, providing 

courses that give people 

with diabetes a working 

knowledge of their 

condition with practical 

tips, as well as enough 

theory to know what is 

the right thing to do in 

various situations. The 

diabetes educators strive 

to transform themselves 

from the role of expert to 

the role of consultant. 

The role of the expert 

should be taken over by 

the participants 

themselves. 

The concept is simple and 

effective: the best way of 

coping with diabetes is to 

master the condition 

yourself. Those who 

become diabetes experts 

and achieve a high level of 

practical and theoretical 

knowledge of the condition 

will be able to maintain a 

higher quality of life. 

Peer Groups Provide 

Atmosphere of Trust 

Each course consists of 11 

units and runs for around 

five full days. Each class 

consists of 10 to 12 

participants of similar age. 

It has been found that the 

majority of participants 

enjoy the group experience 

with people they can relate 

to. They are all allowed to 

have a friend, parent or 

spouse sit in. However, in 

groups with adolescents, 

the ‘extras’ are girl- or 

boyfriends and not parents. 

The young teenagers must 

learn to stand on their own 

feet, so their parents are 

offered tuition in another 

course. 

Learning by Combining 

Theory and Practice 

The curriculum covers all 

the main themes and gives 

people, newly-diagnosed 

with diabetes, all the 

necessary knowledge and 

skills to cope with most 

aspects of their condition. 

The participants learn how 

to administer insulin, test 

blood sugar levels and 

attain control, choose 

proper exercise, plan 

appropriate meals, read 

food labels and how to 

generally live with diabetes. 

The curriculum also 

includes practical tuition 

on topics such as 

exercising, good cooking 

and shopping. These 

activities form a very 

important and popular 

part of the classes. 

The participants walk to the nearby shops as part of the unit 

on nutrition and learn about buying the right food. 

Each course is run by two 

nurses who teach the group 

as a whole as well as give 

individual tuition. The 

nurses then become the 

contact persons for the 

participants, responsible for 

their supervision during 

and after the course. Apart 

from diabetes nurses, 

dietitians, physicians and 

podiatrists are also involved 

in the education 

programme. 


EDITORIAL 


the affect of exercise on 

insulin and oral medication, 

losing weight and 

low blood sugar levels 

during sport. During 

the course we do 

exercises and measure blood 

glucose levels 

before and afterwards. The 

young groups even 

go to a fitness centre in 

town to do their exercise. 

Once at the shops, the groups learn about reading the food labels, for example, all the different 

names given to sugar, the fat content, number of calories, etc. 

This is very popular, and 

during the following 

session the participants’ 

own experience and 

suggestions form the 

backbone of the 

discussion. 

The Curriculum 

The following is a brief 

glimpse of how a typical 

course is set out. The courses 

are divided up into units. 

1: Introduction 

This includes the 

presentation of the course 

and the education team, a 

brief rundown of the 

condition itself and an 

overview of all the different 

treatment possibilities. 

2: Attaining Blood 

Sugar Control 

After basic theory, the 

participants learn how to test 

their own blood glucose 

levels. All the participants 

make at least four daily tests 

– before the three main 

meals and at bedtime. They 

also learn how to get the 

most out of using a daily 

personal diary, keeping track 

of blood sugar readings, 

insulin administration, 

weight, exercise, food intake 

and incidents of 

hypoglycaemia and 

hyperglycaemia. It is 

emphasized how the diary 

can be useful for interaction 

between the person with 

diabetes, the hospital and the 

general practitioner. 

3: Treating Diabetes 

This unit deals in more 

detail with the alternatives 

in treatment, especially 

concerning insulin and 

oral anti-diabetic agents. 

4: Nutrition 

The nutrition unit is taken 

by the dietitians. The 

group is usually divided up 

into two. One part of the 

group learns about 

shopping for the right 

foods, and the other part of 

the group learns about food 

preparation. Then they 

swap around. How to read 

food labels is also a major 

part of this unit. 

5: Physical Exercise 

Thisk unit covers insulin 

uptake during exercise, 

The participants learn how to keep a person 

insulin administration, weight, exercise, food 

hyperglycaemia. 



6: Alcohol and Parties 

Here the participants 

learn the tricks about 

going out with diabetes. 

7: Hypoglycaemia 

This includes the 

symptoms and signs of 

hypoglycaemia, its 

prevention and treatment. 

8: Hyperglycaemia 

As in the seventh unit, 

the participants learn 

about the symptoms and 

signs, prevention and 

treatment. 

l diary, recording blood sugar readings, 

intake and incidents of hypo- and 

9: Complications 

This unit is taught by a 

physician. The prevention 

of complications and 

relevant treatment options 

are discussed here. 

10: Foot Care 

Foot care is an essential 

factor in the prevention of 

complications. This unit is 

taken up by a podiatrist. 

11: Living with Diabetes 

Living with diabetes is 

where the participants can 

share their stories, feelings, 

and the parts of their lives 

they do not feel others, 

without diabetes, can 

understand. 

The diary is a useful tool for interaction between the person 

with diabetes, the hospital and the general physician. 

Evaluation 

Finally, a questionnaire is 

given out with questions 

regarding achieved 

knowledge. This is used as 

a general evaluation. 

Detailed feedback from 

participants is constantly 

called upon in order to 

improve the courses. 

Many participants continue 

as out-patients at the 

Diabetes Education Centre. 

They keep in touch with 

their contact nurse and the 

hospital ward. Most 

participants, however, are 

referred back to their 

general practitioner. 

More Specialization in 

the Future 

The future of the Diabetes 

Education Centre will 

move more in the direction 

of courses on specific 

topics. 

Having been quite 

successful in creating 

courses for the newlydiagnosed, 

we now feel that 

the time has come to take 

one more step. 

We have already started 

offering special courses on, 

for example, how to use 

insulin pumps from the 

user’s perspective. Ethnic 

groups using an interpreter 

will also soon be 

introduced. 

Ms Alice Jørgensen, Ms Inge 

Kristiansen and Ms Grete 

Kirketerp are diabetes 

nurses and educators at the 

Diabetes Education Centre 

at Odense University 

Hospital, Odense, 

Denmark. 



Helping People with Diabetes: 

A Rewarding Task 

The PUMCH Diabetes Education Centre in China 

Li Wenhui 

Diabetes has ‘arrived’ 

in China. This 

condition was 

relatively rare among 

the Chinese population 

until 20 years ago. As 

life has become more 

and more westernized 

and industrial, the 

prevalence of diabetes 

has increased rapidly. 

The average prevalence 

rate has increased from 

just under 1 percent in 

1980 to as high as 

nearly 7 percent in 

some areas in 1996. 

Chinese health 

resources are struggling 

to keep up with this 

explosion. However, 

the Peking Union 

Medical College 

Hospital (PUMCH) 

have an education 

programme which is 

producing positive 

outcomes. 

The rise in standard 

of living has not 

only brought with 

it an explosion in chronic 

conditions such as diabetes, 

it has also raised people’s 

health awareness. Although 

the health market for 

consumers has become 

more prolific, medical 

services and education have 

remained quite stagnant. 

One exception has been the 

PUMCH which was 

established in 1921 with 

help of the Rockefeller 

Foundation and modelled 

on the Johns Hopkins and 

Health System in 

Maryland, USA. During 

these 70 years it has 

provided China with a 

highly-trained pool of 

medical personnel and 

researchers. In the 1960s, 

doctors had already started 



to recognize the importance 

of widespread education 

concerning diabetes, hence 

the special treatment unit 

for diabetes was established 

in the 1970s to facilitate 

discussion and lectures 

upon the subject. In the 

last 30 years, people 

diagnosed with diabetes at 

the centre have received 

treatment, follow-up and 

assistance. 

In 1996, an electronic 

register was created to keep 

a detailed record of the 

personal data and medical 

history of each patient. 

Presently, 20 percent of the 

people with type 2 diabetes 

treated by the centre are on 

insulin. 

Diabetes Education 

Facility Formally 

Established in 1996 

Also in 1996, the PUMCH 

established the Centre of 

Diabetes Education, under 

the supervision of Dr Wang 

Heng, a well-known 

diabetologist in China. 

People with diabetes from 

all facets of society have 

come forward to the 

education centre to attend 

its bi-monthly round of 

lectures and discussions. 

For reasons of efficiency 

and convenience, 

subgroups are formed 

consisting of participants 

A six-year old at PUMCH is practicing drawing insulin from the bottle. His mother is beside 

him, delighted with his skill. 

from similar geographical 

locations. Each group elects 

its own supervisor and 

includes a physician and 

nurse. The activities 

within these groups are 

mainly centred around 

general discussion and 

question-and-answer 

sessions. 

Centre Offers Large 

Variety of Additional 

Activities 

Since four years ago, an 

annual round of lectures 

consisting of eight sessions 

have been held at the 

centre. This will be 

continued. The subject 

matter ranges from the 

latest in diabetes 

treatment to the 

prevention of 

complications, from 

practical care and selfmanagement 

to highly 

sophisticated scientific 

theory. 

Diabetes nursing and 

psychotherapy is also 

covered. In other words, 

there are fresh topics of 

interest for everyone. 

Extracurricular activities 

such as general knowledge 

competitions and lucky 

draws are often 

conducted, especially 

during holidays and on 

World Diabetes Day. 

In addition to the abovementioned 

activities, the 

centre provides seasonal 

outings for people with 

diabetes. 

Demonstrations of bloodglucose 

monitoring are 

often conducted to show 

the importance of diet 

regulation and physical 

exercise. This wide range of 

activities helps people with 

their day-to-day experience 

in living with diabetes. 

The large selection of 

colourful and interesting 



131±27.0 mg/dl 

(7.3±1.5 mmol/l). The 

2-hour prandial blood 

glucose decreased from 

191±66.3 mg/dl 

(10.7±3.7 mmol/l) to 

172±41.6 mg/dl 

(9.6±2.3 mmol/l), and 

HbA1c fell from 7.43 

±1.32 percent to 6.95 

±1.10 percent (p

ECONOMICS 

Self-Care: 

An Important and 

Cost-Effective Investment 

Tero Kangas 

The elevated cost of 

diabetes can be seen as 

the result of all 

previous failures of 

treatment. As 

illustrated in this 

article, treating 

diabetes complications 

is far more expensive 

than taking 

preventative measures. 

Future cost cutting, 

therefore, can only be 

achieved by improving 

the level of care, 

especially in the field of 

self-management. 

People with diabetes 

must be given the 

means to do this, which 

can only be attained by 

future investment. 

Diabetes differs 

from the majority 

of other illnesses 

in one very important 

respect: the outcome 

depends almost solely on 

the ability of those affected 

to take care of themselves. 

The traditional model in 

which the doctor prescribes 

particular medication 

applies to diabetes only in 

part. All the other essential 

aspects of effective 

treatment (diet, exercise, 

etc) are the responsibility of 

the person with diabetes. 

A Way of Living 

Diabetes is a disorder of 

sugar metabolism. It is also 

a way of living, or a 

vocation, which has to be 

learnt. People with diabetes 

need to know what effect 

eating, exercising and even 

stress has on their blood 

sugar. Everything they do, 

or not do, affects their 

metabolic outcomes. 

Therefore, it is of utmost 

importance that people 

with diabetes understand 

their condition so that they 

are able to treat themselves 

properly. 

Healthcare professionals, 

no matter how 

knowledgeable in the field 

of diabetes, can only give 

advice. People with 

diabetes, after being 

properly informed, must 

then be in the position to 

continue to carry out those 

instructions through selfcare. 

Therefore, they must 

know how to self-monitor. 

Self-Monitoring Central 

to Effective Treatment 

The measure of 

haemoglobin A1c (HbA1c), 

has been one of the major 

breakthroughs in diabetes 

treatment since the 

invention of insulin. The 

other is the self-monitoring 

of blood glucose. HbA1c 

and self-monitoring go 

hand in hand. Although 

the measurement of HbA1c 

indicates how well the 

achieved control meets the 

set targets of the treatment, 

it does not show where the 


ECONOMICS 

possible mistakes lie, or how 

to correct them. This can 

only be detected by selfmonitoring. 

Figure 1 shows 

the positive effect of selfmonitoring 

on HbA1c. 

Figure 1 

Prevention of 

Complications: Main 

Aim in Diabetes Care 

What is effective self-care 

good for? What is it that 

must be achieved? The aim 

of diabetes treatment is to 

achieve blood glucose 

concentrations as close as 

possible to the levels of 

people without diabetes 

(between 4 to 8 mmol/dl or 

70-140 mg/dl). This is done 

in order to avoid late 

complications. Diabetes 

complications threaten the 

very lives of people with 

diabetes and their treatment 

account for the highest 

costs. Complications come 

about due to long-term 

inadequate control of blood 

glucose. These 

complications, however, can 

be prevented with proper 

control of diabetes, which is 

frequently called ‘intensive 

treatment’. 

The Proven Effect of 

Intensive Treatment 

As just mentioned, the major 

reason for the high cost of 

diabetes is its complications. 

Over 90 percent of the true 

excess costs of diabetes are 

due to the treatment of its 

complications, and just 

under one third of people 

with diabetes have them. In 

other words, the other 70 

percent, who have not 

developed them, need only 

less than 10 percent of the 

excess costs of treatment of 

diabetes 1 . (‘Excess’ means the 

additional cost of diabetes 

above that of the 

corresponding gender and 

age-group without diabetes. 

Also known as 

‘incremental’.) 

The results of well-known 

studies have indicated that 

intensive treatment reduces 

complications as well as 

excess costs. The Diabetes 

Control and Complications 

Trial (DCCT) showed a 27 

to 76 percent reduction of 

complications in people 

with type 1 diabetes 2 and 

the United Kingdom 

Prospective Diabetes Study 

(UKPDS) showed a 25 

percent reduction of 

diabetes-related 

microvascular 

complications among 

people with type 2 

diabetes 3 – for which the 

Kumamoto Study showed 

a 64 to 77 percent 

reduction. 

All these studies have proven 

the cost-effectiveness of 

preventing complications 4 . 

The costs of type 2 

complications are, on 

average, 24 times higher 

and, in the case of type 1 

diabetes, 12 times higher, 

than that of their peers 

without complications 1 

(figure 2). 

Cost of Equipping 


In order to carry out proper 

self-care, the person with 

diabetes needs equipment 

such as meters and strips for 


ECONOMICS 

blood glucose monitoring, 

and syringes, needles and 

pens to administer insulin 

when and if required. This 

does sound expensive, but 

when the cost of treatment 

for people with established 

diabetes complications is 

compared to the cost of 

prevention by intensive 

treatment (ie, at least four 

blood glucose tests per day 

as in the DCCT), the selfcare 

group is always shown 

to be the most costeffective. 

In Finland, for example, the 

cost of self-care equipment 

(including blood-glucose 

strips) was recently found to 

Figure 2 

be only 2.8 percent of the 

total incremental costs of 

diabetes care 1 . 

It can be speculated that 

there is a real possibility of 

saving up to some 40 

percent per year of the 

present incremental costs of 

diabetes care. To achieve 

such a result, it is also 

necessary to treat the other 

cardiovascular risk factors 

of type 2 diabetes, not only 

to control glucose 

metabolism. 

Much future investment in 

diabetes education and 

equipment will be needed 

towards improving diabetes 

care. The visible results of 

such investment, however, 

would manifest itself only 

after a period of about five 

years 4 . 

The major worry 

concerning diabetes at the 

moment is the predicted 

explosion of its prevalence, 

especially of type 2 

diabetes 5 . This makes total 

prevention of diabetes on a 

global scale an unrealistic 

goal, indeed. It is, therefore, 

of utmost importance, at 

least in economic terms, to 

prevent the complications 

of diabetes by every possible 

means. Empowerment and 

self-care have been shown 

to be among the most 

effective approaches to 

achieve this aim. 

References: 

1. Kangas T, Sivonen K: Analysis of 

incremental and total direct costs of 

health care for persons with diabetes 

by type of diabetes with age and sex 

matched controls. Abstracts for the 

17th IDF Congress Mexico. Diabetes 

Res Clin Pract 2000:50 (Suppl):8. 

2. The Diabetes Control and 

Complications Trial Research 

Group: The effect of intensive 

treatment of diabetes on 

development and progression of 

long-term complications in insulindependent 

diabetes mellitus. N Engl 

J Med 1993:329:977-986. 

3. UKPDS, Intensive blood-glucose 

control with sulphonylureas or 

insulin compared with conventional 

treatment and the risk of 

complications in patients with type 2 

diabetes (UKPDS 33). Lancet 

1998:352:837-853. 

4. Wake N, Hisashige A, Katayama 

T et al: Cost-effectiveness of 

intensive insulin therapy for type 2 

diabetes: a 10-year follow-up of the 

Kumamoto study. Diabetes Res Clin 

Pract 2000:48:201-210. 

5. King H, Aubert RE, Herman 

WH: Global burden of diabetes, 

1995-2025: prevalence, numerical 

estimates, and projections. Diabetes 

Care 1998:21:1414-1431. 

Professor Tero Kangas, 

Vantaa, Finland, 

diabetologist and internist, 

is former Chief Physician at 

the Eastern Health Centre, 

Helsinki, and was IDF Vice 

President between 1982 

and 1988. He is Honorary 

President of the Finnish 

Diabetes Association and 

was President between 

1991 and 1994. 


RESEARCH 

Combined Study 

in Diabetes 

Care of people with 

diabetes is in need of 

improvement. Patients 

are often left in the 

dark about their 

condition and many 

receive false or 

unnecessary 

medication. It has been 

shown in a recent 

German study, 

performed by the 

Centre for Sociopolitics 

at the University of 

Bremen, together with 

the medical insurance 

company, Gmünder 

Ersatzkasse (GEK), 

that too few people 

with diabetes are being 

subscribed much 

needed medication, too 

many are taking the 

wrong type of 

medication and many 

are inadequately 

informed about 

sensible diet and selfmanagement 

techniques. 

Inadequate treatment 

and lack of information 

from doctors mean 

one thing. People with 

diabetes will suffer from 

complications such as foot 

amputations, blindness and 

serious circulatory 

problems. 

According to Mr Dieter 

Hebel, Head of the GEK, 

“Negligent medical care 

accounts for two thirds of 

all amputations in 

Germany. This means we 

have to truly enable people 

with diabetes to take over 

more responsibility for 

their condition 

themselves.” 

The study also revealed that 

only 50 percent of people 

with type 2 diabetes in 

Germany adhere to a 

specific nutritional plan 

Kristina Hawthorne 

and only 20 to 30 percent 

have received any 

structured education on the 

concomitant conditions of 

diabetes and their 

consequences such as 

hyper- and hypoglycaemia, 

high blood pressure, 

diabetic foot and 

arteriosclerosis, or on oral 

medication or injecting 

techniques. 

Too Many Doctors 

Lack Knowledge 

Mr Hebel directs criticism 

towards the medical scene. 

“People with diabetes not 

only have to worry about 

whether they receive 

appropriate treatment, but 

also lack of information. 

Even the most open of 

patients cannot cope 

properly with a 

misinformed doctor. Too 

many doctors fail to keep 

themselves educated and 

up-to-date.” 

According to the Bremen 

study, many people with 

diabetes are not receiving 

suitable medication and 

treatment. 

Dr Bernhard Braun, the 

leader of the study, states, 

“Too few young people 

with diabetes are on an 

appropriate nutritional 

plan. A reason for this 

could be that doctors are 

still in the dark ages in 

terms of diabetic nutrition 

and are recommending the 

old carbohydrate-exchange 


RESEARCH 

Reveals Gaps 

Therapy 

diets that are nearly 

impossible to adhere to 

over a long term and have 

become obselete.” 

The study also showed that 

more than 60 percent of 

people with diabetes in 

Germany are probably 

using their meters 

improperly and not 

keeping them adequately 

maintained. This can lead 

to false readings, dosages 

and, above all, places the 

user in danger of missing 

important indications. 

“This kind of inaccuracy is 

even more dangerous than 

no self-management at all,” 

states Dr Braun. 

The lives of many people 

with diabetes would be 

made much easier with a 

competent and modern 

nutritional therapy. By 

raising the standard of care 

in such a way, almost 80 

percent of people with type 

2 diabetes could be treated 

without anti-diabetic drugs 

or insulin. According to the 

Bremen study, 30.3 percent 

of such subscribed drugs 

are superfluous. 

A Passport to Health 

In response to the results of 

the study, Mr Hebel 

decided to send every GEK 

member with diabetes a 

‘Diabetes Gesundheitspass’. 

The Gesundheitspass is a 

health ‘passport’ used by 

people with diabetes and 

their physicians to keep a 

record of treatment. Only 

47 percent of the 2700 


involved in the study were 

found to possess one. 

Dr Braun points out, “We 

could provide much needed 

and helpful education and 

provide free ‘diabetes 

passports’ to people with 

diabetes in this country 

with the money that could 

be saved by cutting down 

on unnecessary 

prescriptions.” 



Children Reac 

The Diabetic Coun 

The success of the Diabetic Counsellors in Training (CiTs) 

programme has not only been recognized locally but 

also internationally. The counsellors presented their 

programme at last year’s Pan Africa Congress 

held in Johannesburg and again at the 

17th IDF Congress in Mexico City. 

At both congresses, their presentation 

received standing ovation. What is this 

revolutionary and dynamic movement 

out of Johannesburg, 

South Africa? 

Nana Masike, Siobhan Kotze and Sue Leuner 



hing Children 

sellors in Training 

The initial shock and 

fear felt by people 

newly diagnosed 

with diabetes is very real. “... 

Injections? Every day? What 

do you mean? Where? Blood 

glucose tests? How? What do 

they mean? Hypo- what? 

What can people with 

diabetes eat? 

Oh, no! ...” 

Your world has come to a 

sudden stop. Your child has 

just been diagnosed with 

diabetes. You’re in the 

hospital but not really aware 

of what is happening 

around you. A needle is 

presented to you; it is time 

to administer your first 

injection. The very thought 

of injecting your little one 

terrifies you. You had always 

thought that that was 

something doctors and 

nurses did, not you. You 

think your ‘normal life’ is 

over. 

This initial reaction is a 

normal part of the process 

of adapting to a life that will 

be different in many ways. 

A new life of injections, 

testing and balancing. 

But how do children, newly 

diagnosed with diabetes, feel 

in this situation? A scary life 

of constant battles, with 

every moment filled with 

terrifying choices that could 

spell disaster if the wrong 

decisions are made. 

Help Arrives in 

Moment of Need 

Meanwhile, in walks a 

friendly and vibrant young 

teenager who greets you 

with the words, “Hi! My 

name is Jenna. I have 

diabetes and I have come to 

share with you how I live 

with diabetes.” Your 

immediate reaction is one 

of amazement. How can 

such a healthy, confident 

youngster such as this 

possibly have diabetes? She 

speaks to you and your 

child about her experiences. 

She explains how she copes 

with diabetes. She shows 

you how she does her 

insulin injections, how she 

copes at school, what she 

does when she goes on 

school outings, and when 

she travels or sleeps out at 

friends. In other words, she 

assures you that there is life 

after diagnosis. Questions 

are answered, stories shared 

and phone numbers 

exchanged. From now on, 

this person has become a 

part of the circle of diabetes 

care – a counsellor and, 

more importantly, a friend. 

This young person is not 

just anyone – she is one 

member of a team of young 

people known as the ‘The 

Diabetic Counsellors in 

Training’ or ‘CiTs’. 

The Seeds of Hope 

are Sown 

The programme was started 

in Johannesburg about six 

years ago when Diabetes 

Nurse Educator, Ms Karen 

Denton, noticed a common 

pattern of behaviour among 

her own patients. Karen, 

the mother of a diabetic 

child herself, Siobhan, 

would often take her 

daughter with her when she 

visited her patients. While 



speaking to the parents, 

Siobhan and the child 

would start swapping 

stories and ideas. Siobhan 

would tell the child about 

her own experiences with 

diabetes and would explain 

how she lived with her 

condition at school, while 

visiting friends, on tours, 

when travelling, or at 

home. The idea of the CiTs 

was born. Karen then went 

ahead and selected a group 

of 10 teenagers and trained 

them in various aspects of 

diabetes and child care. 

From here, the programme 

has grown extensively. 

Counselling from Peers 

Easier to Grasp 

One of the problems with 

diabetes is that the 

condition is relentless. It is 

there every moment of 

everyday, and affects every 

aspect of life. Imagine how 

this must feel to a child. 

Children cannot understand 

the seemingly senseless 

strictures imposed upon 

them by what appears to be 

unfeeling adults. “No cake! 

No candy! Not too much of 

this! Be careful when you 

exercise! No, you may not 

sleep over at your friend’s 

house!” 

Having to deal with 

fingerpricks, injections, the 

curtailment of many 

A Counsellor in Training (CiT), Monika Fiandeiro, visiting a newly diagnosed child with 

diabetes in hospital. 

activities and dietary 

restrictions become tedious, 

indeed. Added to this, 

children cannot 

comprehend the fact that 

they will become adults 

and, eventually, elderly. 

That life belongs to 

someone else. The threat of 

long-term complications is 

nothing more than that – 

an empty threat. The 

counsellors, however, are 

able to teach and lead by 

example, and are successful 

at gaining trust and 

compliance. 

Counsellors are there to 

help out at any time. 

Sometimes it is something 

as simple as discussing the 

latest movie, other times it 

can involve the child 

expressing his feelings about 

diabetes and possible 

conflicts and frustrations 

with friends, at home or at 

school. This contact is very 

important in maintaining 

the relationship and trust 

that bonds them. 

Ongoing Training for 

the Ten Counsellors 

Over the past six years, the 

counsellors have not only 

learnt from their own 

experience, but have also 

been through extensive 

training. During the 

weekends, Karen would 

teach them about various 

aspects of diabetes and the 

psychology of children, and 

they would learn at the 

programmes in which they 

participated. The training is 

always ongoing and updated 

as new information, 

techniques and ideas are 

brought forward in the 

diabetes world. The original 

five years of learning 

culminated in a recent 

learning trip to the Joslin 

Diabetes Camp and a visit 

to the Joslin Institute, USA. 

CiT Group Activities 

Create Trust 

The counsellors work at 

diabetes camps (averaging 

10 weekend camps a year), 



absent. Counsellors are 

never negative towards a 

child. They use positive 

reinforcement techniques 

to encourage appropriate 

behaviour. At the same 

time, all conversations are 

totally confidential and a 

counsellor will only break 

the confidence if it is 

essential to the child’s 

well-being, and even then, 

the child’s permission is 

first sought. 

A new junior CiT discussing diet with her young charges at a diabetes camp. 

hold fun days, visit newlydiagnosed 

children in 

hospital and help those 

who find life with diabetes 

challenging. “We never, 

ever tell a child what to do, 

we only explain to them 

what we do,” says one 

counsellor. “Who best to 

understand how a child 

feels than another child?” 

says another. 

Camps for diabetic children 

are not uncommon around 

the world, and counsellors 

at camps are not a new 

idea. However, they are 

simply one aspect of our 

counsellors’ numerous 

functions. Campers and 

counsellors share phone 

numbers to keep in 

contact. This means that a 

counsellor may call a 

camper to invite him or 

her to a ‘fun day’ or a 

camper may call a 

counsellor for any number 

of reasons. 

Fun days can differ in all 

aspects. Most common are 

those that are held at the 

local mall where a small 

meal or snack is provided 

and then the fun and 

games begin. Bowling, 

mini-golf and movies are 

some of the more popular 

activities. These are great 

ways to allow children 

who may be worried 

about leaving home to go 

on camp to experience 

some of the fun and get a 

taste of camp life and the 

diabetic community they 

have become a part of. 

They also give ‘old 

campers’ a chance to catch 

up with their counsellors 

and friends, and give 

others a chance to meet 

other people with diabetes 

so that they know that 

they are not alone. 

Positive Reinforcement 

and Individual Support 

Given by Counsellors 

Group activities, however, 

do not fulfill all the needs 

of a child. Counsellors can 

arrange to meet a child 

with diabetes either at his 

home or at a favourite 

place to discuss anything 

that may be on the child’s 

mind. Children find it 

easier to speak to a peer or 

a slightly older person 

about problems because 

the fear of reprimand is 

Dynamic Presentation 

Brings High Profile 

In addition to working 

with children with 

diabetes and their 

families, the counsellors 

try to spread diabetes 

awareness. They have 

appeared in magazines, 

and on the radio and 

television. They are often 

to be seen giving talks at 

schools, social groups, 

clubs – wherever they are 

invited to speak. 

As one counsellor says, “It 

is not the big awards that 

make us feel good, it is 

the thank you from a 

mother who says that her 

child is managing better 

after we saw them.” 

Another says, “Even more 

than that, it is the genuine 

smile a child gives you 

when you leave after 

seeing them.” 



Newcomers to the Scene 

The CiT initiative has now 

moved on to a new stage. 

The original 10 

‘Counsellors in Training’ 

are now called ‘Diabetes 

Counsellors’ and a new 

team of Junior CiTs are in 

training. Forty children 

aged 12 to 17 from all 

around South Africa were 

selected last year to 

undergo the challenging 

training. Over a period of 

three years they will attend 

an annual three-day 

workshop. They are 

required to complete four 

written assignments on 

various aspects of diabetes 

per year and attend camps 

as leaders in their own area. 

They also visit hospitals 

and attend the South 

African Diabetes 

Association events. 

Karen hopes that one day, 

every person with diabetes 

will have someone like 

these counsellors to help 

out and be a friend. A 

friend with a common 

bond – diabetes. 

Ms Nana Masike is a 

diabetes nurse, Ms Siobhan 

Kotze, a diabetes 

counsellor, and Ms Sue 

Leuner is Editor of 

Diabetes Focus, 

Johannesburg, South 

Africa. 

A Uniquely Effective Social Support System 

As a clinical psychologist working extensively with children and a 

student at the Department of Psychology at Rhodes University 

(Grahamstown, South Africa), my field of research is on the 

psycho-educational aspects of social support systems and their 

impact on children with chronic diseases. 

The Diabetes Counsellors in Training initiative, supported by 

Roche Diagnostics and Eli Lilly, is a unique programme for diabetic 

children based on the psycho-educational concept of peer 

mentoring. The process of peer mentoring and learning through 

role models teaches children to integrate the diabetic condition, 

with all its demands, into their lifestyles. 

I had the privilege to participate in a diabetes camp and observe 

the process of peer mentoring, that is, of children teaching other 

children. In interviews with the counsellors, it was made apparent 

that the impact of this programme is twofold. It builds up their 

knowledge about diabetes through the teaching of the necessary 

skills for monitoring and controlling blood glucose levels and it 

engenders a sense of well-being, confidence, self control and 

compassion. 

In interviews with counsellors’ parents and with parents of children 

who had attended these camps, the results were also positive. 

Most of the latter had established ongoing post-camp 

relationships with the counsellors. The parents were all impressed 

with the positive impact the modelling of peers had had on the 

lives of their children. Their children now had the ability to selfmonitor 

their diabetes and social improvements were seen within 

the family sphere. 

Ms Jo Kanfer 



Listen ... 

to a Voice 

Bibi Hølge-Hazelton 

Listen to the voice of 

a young girl Lonnie, 

who was diagnosed 

with type 1 diabetes 

at 16. Imagine that 

she is deeply involved 

in the social security 

system. She lives with 

her mother and two 

siblings in a working 

class part of a small 

town. She is at a 

special school for 

problematic youth, 

and her carers are 

seriously concerned 

about how she is 

going to manage her 

diabetes. 



Lonnie, at the age of 16 

Iwent from 56 to 43 

kilos within a few days. 

I felt really bad. 

It was very scary. 

My counsellor looked at 

me and asked if I had been 

smoking dope again. 

Then we went to the 

doctor who said, “There is 

something else wrong with 

her, we must call an 

ambulance.” He did not say 

why, or how, or anything. 

I was just sitting there, 

totally in the dark. Help! 

What is happening to me? 

What is the meaning of all 

this? 

At the moment my blood 

sugar goes up and down 

whether I eat or not. 

But I need to look nice 

because there is always that 

fear that I will be sent to 

the hospital. 

When I am in hospital, I 

can do absolutely nothing 

but just lie there. 

I am being observed all the 

time, and am allowed 

almost nothing. 

Lying there, I am thinking, 

“Tell me, am I more ill 

than they really let on?” 

I just take one day at a 

time. I am used to this, 

because I have had to 

endure enough things 

already. 

Scientists and all those clever 

people. It is easy for them to 

just sit there and say so and 

so and so. But they don’t 

know how I feel. 

How should they know, 

when I have not been asked? 

And even if they ask one 

person one question, it isn’t 

so that all other people also 

feel that way. 

In general, we can live a 

normal life. But there is, 

however, a great deal of 

difference. 

A year has passed. She 

has been admitted to the 

hospital countless times. 

She has stopped coming 

to the appointments. She 

has been thrown out of 

school. She spends her 

days in front of the 

television, waiting for 

her friends to come 

home. She is confused, 

angry, trapped. 

Nevertheless, if you 

listen carefully, you will 

hear how diabetes gives 

meaning to her life 

history, and if you really 

concentrate, you will 

also hear her own 

suggestion as to what 

kind of help she would 

find relevant. But she is 

not heard. Her carers 

have given up on her. 


I can’t cope with all this 

pressure. I don’t want any 

more pressure. I do not 

even want to think about it 

and only want to get away. 

I don’t have very much to 

do with my father. It is four 

years since I last saw him. 

I do not want to receive 

help. 

I want to take care of 

myself. I have always been 

like that. 

I simply believe that I 

need somebody I can cling 

to and talk to about 

everything to help 

stabilize myself. 

Without having really 

thought about it, I am, in a 

way, tired of living. I don’t 

care about anything. I 

couldn’t care less about my 

family. 

I feel that I am attached 

to something that I do not 

want to be attached to. I 

have no use for these 

people at the hospital, 

because one day I will be 

standing there, and will 

have to be able to manage 

alone someday without 

them, too. 

I am unable to express 

myself. 

I was only 10 or 11 years 

old when I had this 

thought that maybe I 

should jump into the river, 

nobody would miss me 

anyway. I thought about 

how they would look when 

they stood there looking 

down into my grave. But 

then there was this little 

voice up there that said, 

“What about daddy? What 

would daddy say?” 

And I ran home again. 

You are a coward if you 

take your own life. That’s 

for sure. 

Listen to the voice of 

Lonnie. She has had 

diabetes for two years. 

She has not been in 

contact with her carers 

for a long time. To 

them she is probably 

lost. But what is it she 

is telling? Diabetes has 

become an integral 

part of her life, gives 

meaning to her 

personality and her 

painful story, and now 

she sees it as a lifeline, 

drawing her out of the 

haze and the endless, 

unstructured days. 



They do not realize that this 

leaves a stamp on your life. 


I have not been inside a 

hospital for the last 18 

months. I have been 

indifferent and have ignored 

the whole thing. This is 

probably because I have 

experienced a lot of bad 

things. Hospital only gives 

you a framework of rules, 

which you couldn’t care less 

about anyway. 

I have always been very 

stubborn. I just feel like 

straightening my back and 

saying, “You know what? I 

can manage by myself! I have 

told you so many times. 

What about believing in me 

instead?” 

I have seen it from my 

mother’s side a lot, because I 

could easily see that I was so 

blind. In the end it was too 

humiliating for my her. 

When I was 12, I was told 

how my father had treated 

my mother. He tried to hit 

her and made a hole in the 

wall. That was at the time 

when my mother had 

become pregnant with me 

and he did not believe that 

he was the father. 

I have found my own 

explanation for the diabetes. 

It is the soul that has finally 

been used so much that the 

pancreas simply has stopped 

functioning. 

I believe it has been a good 

thing that I got diabetes, 

because if I had not got 

diabetes, I would never have 

stopped taking hash. 

Due to diabetes, I mustn’t 

lose myself so much that I 

forget my injections. If I did 

not have diabetes and did 

not have to inject myself, 

then I would have nothing 

to be responsible for. 

I might as well say it. I 

believe in fate. It has been 

my fate to get diabetes. 

If not, I would have been lost 

by now. 

Who can judge what life 

is like for a person with 

diabetes? Who has got 

the recipe for the 

wonder tool that can 

make people with 

diabetes ‘comply’? The 

answer is hidden in the 

voices of the people who 

live with diabetes. We 

need to listen more 

carefully. 

This piece was extracted 

from qualitative interviews 

with Lonnie, conducted as 

a part of Ms Bibi Hølge- 

Hazelton’s thesis entitled 

‘Diabetes – A School for 

Life’. Ms Hølge-Hazelton is 

doing her doctorate at the 

Graduate School of 

Lifelong Learning in the 

University Centre of 

Roskilde, Denmark. 


The Internet: 

Empowering People with Diabetes 

There are numerous benefits to 

accessing diabetes information on 

the internet. It provides the latest 

scientific information and 

guidelines, allowing users to 

overcome geographic barriers. The 

information is relatively 

inexpensive and easy to find and 

is available seven days a week, 24 

hours a day. Here are two 

examples of websites from 

different corners of the globe. 


Canadian Diabetes 

Association’s 

Best Information 

Provider 

Michael Lund 

Imagine having 

millions of pages of 

diabetes information 

at your fingertips 

whenever you need it, at 

any time, day or night. 

This was only a dream 

less than 10 years ago, 

but today the internet 

can deliver this in 

seconds. For example, 

searching the term 



‘diabetes’ on the 

Google.com search 

engine results in 

2,780,000 page links. 

The number one benefit 

of having access to this 

information is that it 

enables people to take 

charge of their own 

health by helping them 

stay informed and learn 

more about the disease 

and ways to manage it. 

Some may question the 

importance of looking for 

information on diabetes 

if they regularly see their 

doctor. Your doctor is 

expected to know a great 

deal about hundreds of 

different health problems 

and he or she can’t 

always stay on top of the 

latest research or 

developments. Your 

health is at stake, so 

taking responsibility for 

your own health is 

important. 

This does not, in any 

way, suggest that the 

internet or any other 

information source be 

used as a substitute, but 

rather as a complement 

to regular visits to a 

healthcare professional. A 

good doctor will be 

pleased that you are 

informed and taking an 

interest in your health. 

Being Selective 

When reviewing material 

online, however, caution 

is required. Some 

websites may have a bias 

for their material or, in 

some cases, may provide 

incorrect information. 

Non-profit associations, 

government agencies or 

universities typically run 

the most reliable online 

resources. 

Internet Provides 

Great Opportunity 

for Interaction 

In addition to being an 

invaluable resource for 

information on diabetes, 

the internet is also an 

excellent way to find 

support and advice from 

other people with 

diabetes. Many sites 

provide discussion groups 

or electronic bulletin 

board systems where you 

can post a question or a 

problem and receive 

responses from others 

who have been through 

similar situations. You 

can also learn from the 

questions and responses 

others have posted. 

The internet doesn’t only 

empower the person with 

diabetes, but it can also 

be an invaluable tool for 

diabetes organizations. 

Website Best Method 

for Giving Information 

Each month, the 


Association site, 

www.diabetes.ca, serves 

over 55,000 visitors who 

view more than 300,000 

pages. There simply isn’t 

an easier way of serving 

that many people with 

any other method of 

communication. 

At the Canadian Diabetes 

Association, the website is 

becoming the primary 

means of providing 

diabetes-related 

information. 

In addition to the many 

pages of information 

already online, we are 

converting many of our 

paper-based articles and 

brochures and 

reformatting them for 

display on the web. 

More than 150 Canadian 

Diabetes Association 

branches across the 

country list information 

on branch news, support 

groups and local events 

online. 

Taking this one step 

further, we are 

implementing a 

discussion group area to 

establish a virtual 

community for those 

people who are not close 

to a branch or who prefer 

to get their information 

from the internet. 

The World Wide Web is 

already an incredible tool 

and a great resource for 


despite it being around 

for less than a decade. 

It will continue to grow, 

offer new and exciting 

opportunities for people 

with diabetes to help 

them manage their 

disease. 

Mr Michael Lund is 

Manager of the Website 

and Online Initiatives in 

the Marketing and 

Communications 

Department of the 


Association, Toronto, 

Canada. 



German Website: 

A Stamp of Quality 

Thomas Baehring, Melanie Steppenfeld and Werner Scherbaum 

In the face of rising 

diabetes prevalence in 

Germany, 

empowerment of people 

with diabetes and access 

to information is 

especially needed for the 

prevention of the 

condition itself, as well 

as its complications. To 

this end, a cooperative 

effort between the 

National Ministry of 

Health, the German 

Diabetes Research 

Institute and the two 

national diabetes 

organizations, 

Deutsche Diabetes- 

Gesellschaft (DDG) 

and the Deutsche 

Diabetes Union 

(DDU), has created a 

new website offering upto-date 

and qualityassured 

information for 


and healthcare 

professionals alike. 

Access to expert 

information has 

proven to be one 

of the most essential tools 

in the prevention of 

diabetes and its 

complications, 

particularly in enabling 

empowerment. The 

internet is playing an 

increasingly important 

role in this process. It 

provides the basis for 

making information and 

electronic communication 

accessible to its users. 

The internet also offers 

further opportunities by 

providing people with 

diabetes with interactive 

designs consisting of 

discussion forums for 

those affected, 

appointment calendars for 

The internet can be an incredibly powerful teaching tool because it can provide the most 

up-to-date knowledge. 

© Roche Diagnostics 



regional activities, online 

classification of diabetes 

risk, and possibly, in the 

future, personal medical 

files for use in diabetes 

therapy. 

Need for Quality 

Assurance 

However, this process 

demands the highest 

standards in terms of 

technology and data 

protection. Experts 

working in clinical and 

research fields of diabetes 

must, therefore, play a 

key role in the 

contribution, control, and 

quality assurance. 

Currently, there is a 

plethora of information 

on the internet 

concerning diabetes. The 

information offered is of 

varying quality and is 

often difficult to navigate. 

Understandable and 

Easy to Navigate 

In the negative case, users 

can find it difficult to 

obtain objective and 

balanced health 

information. In this 

context, a new website 

under www.diabetesdeutschland.de, 

created 

in June this year, has been 

implemented, offering 

information controlled by 

experts in a style that the 

non-expert can easily and 

readily understand. 

The information provided 

by the portal is prepared 

by an expert team from 

the German Diabetes 

Research Institute, 

Düsseldorf, with a council 

of 40 diabetes specialists 

from all over the country. 

It is published by the 

DDG, the body of 

healthcare professionals, 

and financially supported 

by the German Ministry 

of Health. Another very 

important contributor 

and patron of the website 

is the DDU, the national 

combined diabetes 

association. The DDU 

ensures that the interests 

and opinions of people 

with diabetes are included 

in the information 

provided. 

diabetes-deutschland.de 

is not only aimed at 

people with diabetes, but 

also their families, friends 

and those others involved 

in the prevention of 

complications. It provides 

information about topics 

relevant to everyday life, 

integrating them more 

into the individual’s 

diabetes management. 

The website presents a 

trustworthy source of 

information presented in 

a clear way and includes 

daily breaking news, 

regular newsletters sent to 

the users by e-mail, and a 

question-and-answer area 

serviced by diabetes 

experts. A diabetes 

appointment calendar, 

updated daily, provides 

information on talks, 

seminars, workshops, TV 

shows and regional events 

held by self-help groups, 

and an address list of 

contacts. 

The website also includes 

an online discussion 

forum for people with 

diabetes and other 

interested parties to 

interact either through 

normal discussion, 

interactive games, and 

tests to assess risk, 

diabetes knowledge, etc. 

The contents, structure 

and organization of 

diabetes-deutschland.de 

has become a model for 

providing information 

controlled by experts for 

people with diabetes both 

within and beyond 

Germany’s boundaries. 

Thus, the main direction 

in the future will be on 

developing a European 

and, eventually, a 

worldwide network of 

diabetes information, each 

with its own national 

emphasis. The 

experiences of 

the website may be drawn 

upon in creating defined 

strategies towards this 

goal. 

Dr Thomas Baehring, 

Dr Melanie Steppenfeld 

and Professor Werner 

Scherbaum, German 

Diabetes Research 

Institute, Heinrich Heine 

University Clinic, 

Düsseldorf, Germany, are 

all part of the diabetesdeutschland.de 

team, for 

which Dr Baehring is 

responsible for technical 

and academic input and 

Professor Scherbaum is 

consulting director and 

publisher. 


IDF UPDATE 

Empowerment and 

How It Can be 

Implemented 

The Role of Diabetes Associations 

Bjørnar Allgot 


IDF UPDATE 

The definitions of 

empowerment are 

many but less varied. 

They all tend to refer 

to a ‘process’. In this 

article, Mr Bjørnar 

Allgot, Norway, briefly 

analyses the concept of 

empowerment and 

gives guidelines as to 

how this process can be 

achieved. Finally, as 

IDF Vice President, 

Mr Allgot sees the need 

for the International 

Diabetes Federation to 

create an effective tool 

for evaluating 

empowerment which 

can be used by member 

associations around the 

world. 

There are many 

definitions of 

empowerment 

and all are quite similar in 

essence. Empowerment 

can be understood as a 

process whereby a person 

attains the authority to 

make decisions for 

managing his or her own 

life. 

Education: 

Key to Management 

of Chronic Illnesses 

Chronic conditions 

require optimal treatment 

facilities, combined with 

an appropriately adapted 

and continual prospect of 

education. Learning about 

one’s own condition is a 

basic necessity for 

managing life with 

diabetes. People with 

diabetes must make their 

own decisions concerning 

their diabetes and be 

responsible for difficult 

and demanding choices in 

their daily lives. 

Education in selfmanagement 

provides the 

best possible foundation 

for making such personal 

decisions. Seen in this 

context, a lack of 

education is as serious as a 

lack of medicine. 

People with diabetes need 

the opportunity to make 

decisions about their own 

treatment, as they are the 

ones who have to live with 

the consequences. 

Health service personnel 

have medical knowledge 

about diabetes, but that is 

not necessarily the same as 

knowing what is best for a 

particular person. Giving 

people with diabetes the 

tools for making 

appropriate decisions in 

self-management is the 

best possible foundation 

for treatment. 

Different Ways of 

Communication 

Communication between 


and their ‘patients’ can 

take place in different 

forms. The healthcare 

professional can give 

instructions and the 

person with diabetes 

listens and is expected to 

obey. This process is 

categorized as one-way 

communication. On the 

other hand, there can be a 

balanced, mutual 

relationship between the 


and the person with 

diabetes. This process is 

categorized as two-way 

communication, whereby 

each of the parties is an 

expert in his own right, 

but together form a solid 

foundation for managing 

diabetes. This model 

represents the basic 

foundation for the 

development of 

empowerment. 

Diabetes Associations 

Essential in Delivery of 

Information 

Diabetes associations play 

a central role in 

influencing the 


empowerment for people 

with diabetes. First and 

foremost, diabetes 

associations play a major 

role in education and the 

dissemination of 

information. 

It is often said that 

knowledge is power. 

Important to this is access 

to information. Having 

access to valid, updated 

information will put an 

individual in quite a 

different position than 

those who are 

uninformed. Most 

diabetes associations 

publish journals and 

leaflets to disseminate 

information to their 

members. This is an 

essential contribution in 

empowering those with 

diabetes. 


IDF UPDATE 

© Martha Funnell 

Education provides the best possible foundation for making personal decisions in managing diabetes. 

During the last few 

decades huge changes 

have taken place in the 

treatment and 

understanding of 

diabetes. This new 

knowledge will, without 

doubt, lead to changes and 

improvements. Journals 

about diabetes contribute 

to this new knowledge and 

are available to individuals 

for the rest of their lives. 

Instruction versus 

Interaction 

It is also important to look 

at how information is 

given. If information has 

the character of being 

instructive and only 

medically oriented, it will 

not have an especially 

positive influence on the 


empowerment. If 

information is interactive 

and user-receiver oriented 

it will have a stronger 

positive effect. 

Most diabetes associations 

organize their own 

educational activities 

towards care and 

management, which 

contributes greatly to 

the development of 

empowerment. However, 

it is also important that 

organizations influence the 

health service and 

authorities so that 

educational activities 

provided by the health 

service is done in such a 

way that learning to 

manage becomes an 

integrated element in the 

treatment of diabetes. 

The Methods of 

Learning 

Not only is it important 

that learning actually takes 

place, it is also important 

how the learning takes 

place. There is a vast 

difference between 

teaching and learning. 

While teaching can be 

carried out by a single 

person with a lot of 

knowledge, learning is 

something that, by its very 

nature, must take place 

within the individual. A 

passive form of teaching 

frequently leads to 

individuals learning 

passivity. An active form of 

teaching, centred around 

the ‘pupil’, will promote 

activity, independence and 

responsibility for one’s 

own learning. These 

interactive forms of 

education are central to 


IDF UPDATE 

the promotion of 

empowerment. 

Empowerment is Not a 

Power Game 

The diabetes association 

can also promote 

empowerment by its 

philosophy. There are 

different forms of 

knowledge about diabetes: 

scientific medical 

knowledge and everyday 

medical knowledge. In 

order to manage diabetes 

we must have both. 

To avoid the pitfall 

whereby empowerment is 

reduced to a question of 

who has power over 

whom, it is important that 

a mutual respect exist 

between healthcare 

personnel and people with 

diabetes. When 

empowerment takes place, 

both the healthcare 

personnel and people with 

diabetes benefit. It is a 

question of cooperation to 

gain and maintain control 

over the condition, and a 

question of how people 

with diabetes can keep 

their independence, 

freedom and integrity. 

Effective Evaluation 

How can we measure 

empowerment? Until 

now, there have been no 

effective tools to measure 

empowerment, but the 

time is ripe for such 

development. 

When measuring 

empowerment, we must 

differentiate between 

activities that promote 

empowerment and to 

what degree people with 

diabetes themselves think 

they manage their own 

diabetes. 

It is easy to ascertain the 

former (if a person with 

diabetes receives 

education or not). We 

know whether or not the 

associations themselves 

provide this education 

through magazines, 

journals and leaflets. It 

can be assessed, for 

example, whether their 

members have access to 

this information 

regardless of their 

Diabetes associations all around the world are busy educating their members. This is happening 

in over 150 countries. 

geographical location or 

socio-economic situation. 

To assess the latter is 

more difficult. 

Nevertheless, a few years 

ago in Europe, a 

questionnaire was 

designed with indicators 

for the development of 

empowerment. There is 

now a need to further 

develop this work. 

I believe this task should 

be one of the most 

important priorities for 

the International Diabetes 

Federation, and should be 

carried out in 

collaboration with 

diabetes associations 

around the world. 

Having defined 

purposeful indicators, we 

can regularly measure the 


empowerment. This is an 

important tool for 

diabetes associations for 

evaluating the results of 

their work. 

Mr Bjørnar Allgot is 

General Secretary of the 

Norwegian Diabetes 

Association and IDF Vice 

President.

... Empowerment - International Diabetes Federation

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