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Table of contents

Preface............................................................................................................................4 1. Introduction................................................................................................................6 2. Sri Lanka....................................................................................................................9

Geography..................................................................................................................9 Early history...............................................................................................................9 Colonial times ..........................................................................................................11 Independence ...........................................................................................................12 The population .........................................................................................................13 Economy ..................................................................................................................14 Sickness and healthcare ...........................................................................................15

3. The disease Diabetes Mellitus and patient education. .............................................17 The chronic disease diabetes mellitus......................................................................17 Types of diabetes .....................................................................................................17 Complications and symptoms..................................................................................18 Therapy ....................................................................................................................19 Diabetes patient education; an historical overview .................................................20

4. Diabetes patient education; theoretical background ................................................22 The importance of diabetes education .....................................................................22 The providers of education ......................................................................................22 The receivers of education .......................................................................................24 1. Psychosocial factors.............................................................................................25 2. Enabling factors ...................................................................................................27 3. Socio-demographic factors ..................................................................................27

5. Research questions, definitions and research design ...............................................29 Research questions...................................................................................................29 Definitions................................................................................................................30 Research design; the providers of education ...........................................................31 Research design; the receivers of education ............................................................32

6. Research methods ....................................................................................................34 The methods applied at the NDC.............................................................................34 The methods applied in the hospitals.......................................................................36 Remarks on the research methods............................................................................36

7. The providers of education; an inventory ................................................................39 The National Diabetes Center and the Diabetes Association of Sri Lanka .............39 Clinical services at the NDC....................................................................................39 Educational services at the NDC .............................................................................40 Other activities of the NDC .....................................................................................41 The General (teaching) Hospitals in Galle and Peradeniya .....................................43 Other sources of information ...................................................................................45

8. The receivers of education; socio-demographic features.........................................47 Sex and age distribution...........................................................................................47 Ethnicity and religion...............................................................................................49 Marital status and children.......................................................................................50 Level of education and profession ...........................................................................51 Medical factors.........................................................................................................54 Enabling factors .......................................................................................................55

9. The motivation and the diabetic knowledge of the patients ....................................56

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Oral information by doctors and nurses...................................................................56 Written information and teaching sessions ..............................................................57 Other sources of information ...................................................................................60 Knowledge test results of the whole panel ..............................................................63 Knowledge in three places of research ....................................................................66 The knowledge of insulin dependent patients..........................................................67

10. Psycho-social features of the respondents .............................................................69 Degree of acceptance of the disease ........................................................................69 The locus of control .................................................................................................71 Health value .............................................................................................................74 Social support...........................................................................................................76

11. Multivariate analyses .............................................................................................78 12. Conclusions............................................................................................................84

Diabetes patient education .......................................................................................84 Motivation and knowledge ......................................................................................85 Flaws and recommendations....................................................................................86

Bibliography ................................................................................................................88 Appendix 1...................................................................................................................91 Appendix 2...................................................................................................................99 Appendix 3.................................................................................................................102

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Preface

Sri Lanka is an island nation in the Indian Ocean, with a multi-ethnic population in

excess of 18 million people. As in other developing countries urbanization is

increasing, and about 25% of the population on the island lives in urban areas, where

they adopt a more Westernized lifestyle. This sedentary lifestyle, combined with

energy-dense diets, stress, smoking and alcohol consumption has led to a change in

morbidity patterns, and diseases, such as cardio-vascular disease, cancer and diabetes

have increased considerably.

This essay is an account of my explorations in the field of diabetes patient education

in Sri Lanka. From September to December 2002 the availability of patient education

in three places on the island was investigated, and moreover patients were interviewed

to explore their knowledge of diabetes and their motivation to learn. The first seven

weeks of the fieldwork period I was a guest at the National Diabetes Center (NDC) in

Rajagiriya, the headquarters of the Diabetes Association of Sri Lanka (DASL). The

research was extended to the General (teaching) Hospitals in Galle and in Peradeniya,

respectively for three and two weeks.

Before heading to Sri Lanka in September 2002 I have read the essays of other

visitors to the island, and had understood that I should slow down my Western

stressful pace. I was given the impression that time is a very flexible concept in Sri

Lanka, and that appointments are often delayed or broken. Even the employee at the

Embassy of Sri Lanka in The Hague, who provided my visa, wished me a lot of

patience. When I arrived in Sri Lanka it all turned out to be otherwise. I was struck by

the hospitality, the efficiency and cooperation of the doctors to whom I turned for

assistance, and it was I who came too late or at the wrong place for appointments.

I am deeply indebted to the persons mentioned below for their hospitality and kind

assistance in this research project. Dr Palitha Abeykoon has initiated the contacts, and

introduced me to the experts in the field of Diabetes in Sri Lanka. Dr Mahen

Wijesuriya, president of the Diabetes Association of Sri Lanka, and Mrs Dhanya

Wijesuriya not only invited me to the NDC, but organized transfer and

accommodation for me. We met only a few times, but the strong positive influence of

‘the Doctor’ was noticeable at the NDC. The junior medical officer Dr. Subhanee

Willarachchi, who is responsible for patient education, translated my questionnaire in

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Sinhalese. She introduced me to the patients on a daily basis and helped the Sinhalese-

speaking patients with the questionnaire. Subhanee and her colleagues gave me

admittance to the clinic rooms, for observation of the clinical and educational services

they provided to their patients. The senior medical officer Dr. Latha Sivakumar

answered the many questions that I had on diabetic healthcare and education, and

gave me the brochures and other written sources of information.

In the General Hospital in Galle Dr. Thilak P. Weerarathna welcomed me, and

introduced me to his assistants Dr. Dinesha Kalyani and Dr. Kisanthi Athapaththu.

These ladies approached the diabetic patients in the wards, and conducted all the

interviews for me, because none of the patients mastered the English language.

Professor Upali Illangasekera gave me access to his patients at the General Hospital in

Peradeniya. His assistant Dr. Himali Jayaweera approached and interviewed diabetic

patients in this hospital, and she surprised me by conducting 22 interviews within

seven working days. Last but not least am I grateful to all the anonymous diabetic

patients, who volunteered to answer my questions. Without their help I would have

left Sri Lanka almost ‘empty-handed’.

In conversations with the professionals in the field of diabetes healthcare their sense

of responsibility for the well being of their patients was evident. However, the number

of patients visiting the clinics in the hospitals is enormous, whereas time and

recourses are limited. It is very difficult to give each patient the care they are entitled

to. I hope that the doctors affiliated to the DASL find the means and recourses to

further improve the diabetic healthcare and education on the island, and I am

forthrightly optimistic about this.

On this side of the world I also enjoyed the support of others. I wish to thank Henk

van Westbroek for the artwork on the front-page of this document. My husband John

van der Kist provided me with lots of information on diabetes mellitus. With his

virtuosity on computers (and his endless patience with an untalented wife) he was

indispensable in the preparation of this document.

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1. Introduction

The number of people with diabetes mellitus is increasing worldwide. In 1985 an

estimated 30 million people had diabetes and in the year 2000 this number has risen

sharply to over 150 million. It is expected that this figure will rise to almost 300

million by the year 2025. The ageing of populations, unhealthy diets, obesity and

sedentary lifestyles cause this alarming increase of diabetes.

The prevalence is higher in developed countries; however, the developing world will

be hit the hardest by the diabetes epidemic in the future. Urbanization and

westernization of lifestyles have already contributed to a substantial rise in diabetes,

and further modernization will accelerate this process. The prevalence of adult

diabetes in developing countries is expected to increase by 170% in the upcoming 25

years, whereas an increase of 41% is expected in the developed world (www.idf.org).

With this high prevalence of diabetes it is to be expected that everybody has diabetic

patients in his circle of acquaintances. My husband was diagnosed with diabetes in the

early nineties and this forced us to learn about this disorder and to adjust to a healthier

lifestyle. When he was put on insulin therapy a few years later our interest in the

disease intensified and we became member of the Diabetes Vereniging Nederland

(DVN). This patient-association provides information and education on all the aspects

of diabetes mellitus. Education of chronic patients is important and diabetes education

in particular is indispensable because the patient is the main therapist. Information and

education on the topic of diabetes are easily accessible in the Netherlands. Patients are

informed orally by health-workers. Brochures and magazines are distributed at

hospitals and pharmacies. More information is available in libraries and nowadays

diabetes related websites are present on the Internet.

In contacts with other diabetic patients I was struck by the lack of knowledge by some

of them. Although education opportunities are widespread in our country, some

patients restrict themselves to the rules given by their doctor and/or diabetic nurse.

The poorly educated patients that we met were often elderly people. When we asked

them why they didn’t go to a diabetic course or read a certain magazine they answered

in a very vague and uninterested manner.

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Although lack of knowledge is not immediately life threatening for the diabetic

patient, it can lead unnecessarily to a very restricted life or to severe long-term

complications, such as blindness. For example, a poorly educated person that I know

eats almost the same food every day, because she does not understand the relations

between insulin dosage, diet and exercise. At parties she drinks sugar-free products

only, whereas well-educated patients would enjoy treats and adjust the amount of

insulin to the extra carbohydrates. The same person often complains that diabetes has

changed and restricted her life and that she is really suffering.

Why are some people not motivated to learn about their disease? What factors have

influence on the motivation of people to seek for information and to follow education?

How do diabetic patients in other parts of the world respond to information and

education? How well are they informed about their disease? These questions have

inspired me to choose ‘diabetes education’ as subject of the fieldwork project abroad,

which is an obligatory part of the studies in anthropology or non-Western sociology at

the University of Leiden. This practical training was performed in Sri Lanka from

September to December 2002.

This fieldwork project in Sri Lanka was a study in the field of medical sociology,

which is concerned with medical systems within societies. In human populations

diseases are more than just a pathological state of the body. During evolution diseases

became social and cultural facts as well. Not only is the patient suffering physically,

but his inability to perform daily tasks may have also economic, social and

psychological consequences for the patient and his relatives. Most societies have

responded to physical problems by the development of a medical system that can be

defined as (Foster, 1983):

The pattern of social institutions and cultural traditions that evolves from deliberate behavior

to enhance health.

In most countries around the world Western biomedical medicine has been

introduced, very often as a colonial spin off. Traditional medical systems and

biomedical medicine co-exist in most developing countries nowadays. Western-based

health services are concentrated more often in urban areas, whereas traditional healing

methods prevail in rural areas (Wolffers, 1987).

In this study the emphasis was on the biomedical healthcare services rather than on

the traditional Ayurvedic system in Sri Lanka. The focus was on diabetes mellitus as it

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is defined by the World Health Organization (WHO, 1999), and on patients that are

diagnosed as diabetics using biochemical tests. Although it might be interesting to

explore how Ayurvedic doctors treat diabetic patients, attention was paid primarily to

Western based therapies and patient education.

In the next chapter some general remarks will be made on the history and the

populations of Sri Lanka. Thereafter, in chapter 3, the disease diabetes mellitus and

the history of patient education are discussed. This section should explain why

knowledge of the disease, and hence patient education are so important in the

treatment of this disorder.

The fourth chapter of this document deals with aspects of diabetes patient education.

An overview of the problems (and solutions) encountered in the field of patient

education is given. These difficulties are discussed with respect to the two parties

involved in the learning process, respectively the providers and the receivers of

education. These problems and their factors of causation lead to the formulation of the

research questions, which are addressed in chapter 5. In this chapter also definitions

and research design are discussed.

In chapter 6 descriptions are given of the applied research methods, and an overview

of the medical and educational services in the three places of research is presented in

chapter 7. The answers of the patients to my questions are analyzed and discussed in

the chapters 8, 9 and 10. The interrelationships between the psychosocial and socio-

demographic variables of the patients are explored by HOMALS multivariate

analysis, as described in chapter 11. Finally, some conclusions about diabetes

educational services, and the patients’ knowledge and the motivation to learn are

made in chapter 12.

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2. Sri Lanka

Geography

The tropical island of Sri Lanka is as large as the Benelux and is situated southeast of

the Indian sub-continent. The island contains a variety of landscapes; from the

beaches the land slopes upwards to plains of paddy fields and to forests. In the

southern part of the island mountain valleys with tea and rubber plantations alternate

with cloud-topped mountains up to 2500 meter.

The climate is determined by two wet seasons or monsoons. From May to August the

southwest monsoon brings rain to the southwestern coastal region and the central hill

country. The northeast monsoon brings rains to the northern and eastern part of the

island from October to January.

Due to varying rainfall in the high and lowlands, three main ecological zones are

distinguished. The dry lowlands in the eastern and northern part of the country form

the first zone. These areas are fertile, but depend heavily on annual rains and hence

are sparsely populated. The second, the lowland wet-zones, are situated in the

southwestern coastal belt and receive rain all year round. The farmers have two or

three annual harvests, and the majority of the population lives in this part of the

island. The Kandyan heartland forms the highland ecological zone and is suitable for

cultivation of tea, coffee and rubber. In the low coastal regions temperatures are high

year round, and in Colombo, for example, the average temperature is 29ºC. Higher up

in the central hill country temperatures are moderate. In Kandy at 450 m the average

temperature is 20ºC, whereas in Nuwara Eliya at 1890 m altitude the temperature is

around 16ºC. (Speek, 1998; Wolffers, 1987).

Early history

Although archeological excavations in the past decades have revealed earlier stone-

age habitation, the Veddah population is considered the island’s oldest people. These

Australoid hunter/gatherers lived in small groups in caves or shelters of branches and

depend on the rich hunting grounds of the forests.

The first settlers of Indo-Aryan origin, the ancestors of the Sinhalese, arrived about

three thousand years ago. These people were not casual travelers, but they were

participants in planned settlement in virgin lands, the resources of which were already

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discovered by explorers. The earliest settlements were along the rivers in the dry

northern zone, and were primarily based on the cultivation of wet rice. Because the

monsoons were unreliable these people constructed elaborate irrigation systems to

counter the risks of periodic drought. The Veddahs never joined in this mainstream

agricultural civilization, and retained their nomadic way of life in the forests.

In time the pattern of language, agricultural practices and Buddhist religion of these

settlers evolved into a distinct culture and links with the Indian homeland dissolved.

The mechanisms for political control became more refined. The city of Anuradhapura

emerged and became the capital for the Sinhalese kingdom for over a thousand years.

The prosperous kingdom served as a magnet for invaders from south India. More than

once control over the central kingdom of Anuradhapura was taken over, while the

rightful rulers fled to the southern city of Ruhuna. Here these rulers rebuilt their forces

and subsequently returned to reclaim their throne.

Photo 1. The ruins of Vatadage House, a circular built Buddhist Monastery in the

Ancient city of Polonnaruwa.

In the 11th century the Chola empire in south India grew much stronger and Sri Lanka

was ruled as a Chola province for 75 years. During this period Hinduism flourished,

and Buddhism received a serious setback. The city of Anuradhapura was destroyed

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and the Chola built a new capital at Polonnaruwa, a hundred kilometers to the

southeast. After the Indian invaders were driven out, the splendorous city of

Polonnaruwa remained the capital. The kingdoms that arose after this time never

attained the grandeur of earlier times. The Sinhalese people, driven by famine and fear

of Indian settlers, drifted to the mountains in the southwest, and developed a

civilization based on village communities. The ancient kingdoms were abandoned and

by the 15th century the most powerful of the later kingdoms was established at Kotte,

near the future harbor of Colombo (Devendra, 1996).

Colonial times

The Portuguese arrived in Sri Lanka early in the 16th century and displaced the Arab

traders who controlled the spice trade. They were not mere traders, but conquerors

who established large plantations of cinnamon for export to Europe. Political

suzerainty was established with the help of armed forces. Some kingdoms in the

central hills were able to maintain independence, but the maritime provinces and ports

were under the Portuguese. Catholicism was easily adapted in these areas, and people

around Kotte and Colombo became frequent visitors of churches.

In time the Portuguese lost power along the seaways of the Indian Ocean, and were

displaced by the Dutch in the beginning of the 17th century. The Dutch built roads to

the cinnamon plantations, and established a system of justice that was the basis of Sri

Lanka’s contemporary legal system. The Dutch occupation was not by a national

army, but by the Verenigde Oostindische Compagnie (VOC), the world’s first

multinational commercial enterprise, with employees recruited from all over Europe.

Many of them stayed on the island to constitute the Burgher community.

The French revolution in Europe resulted a major shake-up of power relations, and the

Dutch fortresses in Sri Lanka all capitulated to the British without firing one shot. The

British didn’t tolerate an independent kingdom at the heart of the island, and through

subversion and sabotage the monarch of the Kandyan kingdom was forced to

surrender to the British crown in 1815. The British, now ruling the whole island,

established a highly centralized network of colonial administration and replaced the

traditional system. Coffee and tea plantations replaced the jungles of the hill areas,

whereas rubber and coconut took over village gardens. It was difficult to persuade the

independent peasantry to work as wage laborers on the huge plantations. The need of

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the British for laborers was met by the import of thousands of Tamils, who were

lodged in barracks at the plantations (Devendra, 1996).

Independence

At the end of World War II the British Empire declined and Sri Lanka gained

independence in 1948. The country became a parliamentary democracy and elections

were held at regular intervals. The colonial name of Ceylon was replaced by Sri

Lanka in 1972 and the country became officially a republic.

Over the years the republic has achieved notable success in human development and

the incidence of poverty has been reduced considerably. Government policies aimed

at healthcare and education in particular. The public healthcare facilities have led to

low infant mortality and life-expectancy figures are comparable to those in developed

Western countries. Education is free in Sri Lanka and a network of schools and

universities has resulted in 91% literacy among the population (Devendra, 1996).

Unfortunately Sri Lanka has been stricken by ethnic conflicts. The social status of the

Tamil minority has varied over centuries. During British occupation the Tamils were

very high ranking, and they were over-represented in civil services. After

independence the Sinhalese majority changed this favored position of the Tamils by a

series of discriminating measures. This has led to radicalism among young Tamils,

who organized themselves in the seventies in the Liberation Tigers of Tamil Eelam

(LTTE). This organization strived for an independent Tamil state in the northern part

of the island. Armed conflict started in 1983 and a civil war had been going on

between government troops and the Tamil tigers. Until the ceasefire in February 2002,

more than 60 thousand people have died in this conflict. In September 2002 a first

round of peace negotiations between the Government and the LTTE took place in

Thailand, mediated by the Norwegians. The fifth round of the negotiations in

February 2003 was shifted to Berlin, because of the fragile health of the chief rebel

negotiator Anton Balasingham, who happens to be a diabetic- and kidney transplant

patient. The LTTE has given up her claim for an independent Tamil state on the

island, and the parties try to reach agreement on sharing power in a federal system.

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The population

Sri Lanka has a population of 18 million people and 75% of them are Sinhalese.

Although the Veddahs are earlier inhabitants of the island, the Sinhalese have a sense

of mystical unity with Sri Lanka. They look back on a long history with ancient

kingdoms, and over time they developed a culture distinct from that of the Indian

mainland. Whereas in India Buddhism disappeared, the Sinhalese have adhered to this

religion.

Photo 2. The Dutch have built the fort in Galle, in the 17th century.

The largest minority of 18% of the population are the Tamils, and very often they are

Hindus. The Tamils fall in two categories, the first being descendants of settlers who

arrived centuries ago. Although they traditionally lived in the north, they have moved

eastward along the coastline to live with other populations. Nowadays Tamils live all

over the country and their presence is visible in Colombo and other major towns. The

descendants of indentured laborers, who arrived during British occupation, form the

second group of Tamils. Their contribution to Sri Lanka’s plantation economy is

immense, though, these Indian Tamils poorly integrate into life of the wider

community. Although both groups of Tamils share origin, language and culture they

don’t intermingle.

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About 7% of the population is Muslim and many of them descended from Arab

traders and South-Indian settlers. Although the latter share the language with the

Tamils, the Muslim culture has kept them culturally and geographically separated

from these Hindu Tamil communities. Most Muslims live in the southwestern coastal

belts and central hills. Another group of Muslims in Sri Lanka are of Malayan origin

and descended from soldiers and political exiles brought by the Dutch and the British.

These Malayan Muslims are well integrated, but live separated from other Muslims.

Furthermore descendants of the Portuguese, the Dutch and the British colonizers live

on the island. These Burghers cultivate a European way of life, based on Christian

faith, English language and Western customs. Nevertheless, there have always been

intermarriages with Sinhalese and Tamils.

The original people of Sri Lanka are the Veddahs and their loyalty always was with

their immediate environment rather than with the island. At present only a few

hundred of them survive (Devendra, 1996; Termeer 2000).

Economy

The economy of Sri Lanka is primarily agricultural, with emphasis on crops such as

tea, rubber and coconut. Next to these plantation-grown crops cocoa, coffee, spices

and tobacco are exported, whereas rice, fruits and vegetables are grown only for local

consumption. The most dynamic industries in Sri Lanka are food processing, textiles

and apparel, and mining of precious stones, amorphous graphite and limestone.

Important are also telecommunications, insurance and banking.

The economy that evolved under the British consisted of a modern sector based on the

plantation agriculture, and a traditional sector of subsistence agriculture.

Manufacturing was an insignificant segment of the economy after independence, and

banking and commerce were strongly linked to plantation agriculture. The foreign

earnings were derived from the plantation crops. The country depended on imports for

nearly 75% of its food requirements and all of its manufactured goods. After 1977 the

Government abandoned statist economic policies, and in the 1980s Sri Lanka’s most

dynamic sectors became food processing, textiles, telecommunications, insurance and

banking. In the mid-1990s the plantation crops made up only 20% of the exports,

compared to 93% in 1970. Textiles and garments accounted for 63% of the exports.

The most important export partners are the USA, the UK, the Middle East, Germany

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and Japan. Machinery, equipment and other commodities are imported from Asian

partners, such as India, Japan, South Korea, and Taiwan.

The economy grew throughout the 1990s, but slowed down in 1996, due to the

drought and the security situation. It rebounded in 1997 and 1998, but slowed again in

1999. The civil war between the Sinhalese government and the minority Tamils has

affected the economy since the 1980s, and Sri Lanka is still dependent on foreign aid.

The Central Bank of Sri Lanka recommends the expansion of market mechanisms in

non-plantation agriculture, the dismantling of the government’s monopoly on wheat

imports and the promotion of a more competitive financial sector for the next round of

reforms (www.mapzones.com).

Sickness and healthcare

In Sri Lanka the mortality pattern in the 1960’s was still typical that of a Third World

country, and the most important causes of death were infectious and parasitic

diseases. Government commitment and good policies in housing, nutrition and

healthcare have led to notable improvements in human development, and to the

decrease in the incidence of infectious diseases such as tuberculosis. Infant mortality

rates have fallen from 48 to 16 per 1000 live births, whereas life expectancies at birth

has climbed from 67 to 75 years for women, and from 65 to 71 years for men over the

last three decades (www.worldbank.org). Nevertheless, infectious or communicable

diseases are still very common and have a distinct impact on the health of the

population. On top of that, the urbanization and adoption of Western lifestyles have

led to an increase of non-communicable diseases, like cardio-vascular disorders,

diabetes, cancer and alcohol/drugs addiction. This ‘double burden’ of communicable

and non-communicable disorders in Sri Lanka and other developing countries is a

major concern for the World Health Organization (WHO) and for national healthcare

organizations (Fernando, 1995; Napalkov, 1995).

Sri Lanka has one of the most effective health systems among developing countries,

which is the concern of the Ministry of Health, Indigenous Medicine and Social

Services. As indicated by the name of this ministry, the health system is based on

traditional medicine and Western-style medical practices, both functioning more or

less independently. Traditional medicine in Sri Lanka is officially recognized and well

respected. Though, everyone in Sri Lanka refer to traditional medicine as Ayurvedic,

other types of traditional healing are also covered by the term. For example, Unani

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(Arab) and Siddha (Tamil Nadu) medical systems are included in the Ministry’s

definition of Ayurvedic medicine. Ayurvedic training at university level is available

and specialized hospitals and dispensaries are present on the island (Wolffers, 1987).

Western-style healthcare services are sufficiently available and near at hand for

everyone in Sri Lanka. Additional preventive healthcare is based on the modern social

welfare system. Education, cheap public transport, food and sanitation for all

contribute to the well being of the population. At village level the public health

services level aim at maternal- and child-care, prevention and control of diseases and

school health services. Furthermore the ministry runs special campaigns for control of

malaria, filariasis, leprosy, sexually transmitted diseases and AIDS.

The epidemiological transition and subsequent increase in non-communicable

diseases have been recognized in Sri Lanka. A national control program is launched,

and in well-women’s clinics ladies of the 35 years and older are now annually

screened for hypertension, breast and cervix cancer, diabetes and other non-

communicable diseases (www.lk/health). For the prevention and the control of

diabetes in particular, the Diabetes Association of Sri Lanka (DASL) and the National

Diabetes Center (NDC) were established, respectively in 1984 and 1995. Based on

surveys over the last two decades, the DASL estimates that the prevalence of diabetes

of diabetes is at present 1 million patients. This number doubles each decade, and 3

million patients are expected in the year 2025 (Wijesuriya, 1997). The activities of the

DASL and the NDC are discussed in more detail in chapter 7.

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3. The disease Diabetes Mellitus and patient education.

The chronic disease diabetes mellitus

Diabetes mellitus is a metabolic disorder, in which the uptake of glucose by the cells

in the body is disturbed. When carbohydrates are eaten they are metabolised into

glucose, the primary fuel of the body, and this glucose is transported in the

bloodstream. As soon as the blood glucose level increases (e.g. after a meal with

carbohydrates), the pancreas starts to excrete more insulin. This hormone plays a key

role in the transfer of glucose out of the bloodstream into the cells of the body, where

it is used as fuel. In diabetic patients there is insufficient or no production of insulin,

or the cells of the body have become insensitive to insulin. This lack of insulin leads

to high levels of glucose in the blood, which is eventually excreted by the kidneys.

This excretion of glucose is coupled with excessive urination or polyuria, and

subsequently with incessant thirst.

The diabetic urine is sweet and the name diabetes mellitus is derived from this

symptom. Diabetes is Greek for excessive urination and mellitus is the Latin word for

honey. The disease has been known for ages. At 1500 BC, in the papyrus of Ebers

was already written about polyuria, and in the second century AD Aretaeus of

Cappadocië described the classical symptoms of thirst, weight loss and urination. The

sweet taste of the urine was already mentioned in the third century AD by Chinese

and Japanese doctors and was rediscovered by Thomas Willis in 1674. In 1899 typical

diabetic symptoms were observed in dogs, from which the pancreas was removed.

The first insulin was isolated from pancreas tissue in 1921 and a year later the first

patient was saved with insulin. This was the turning point in the treatment of the, until

that time, fatal disease (Schut, 1990).

Types of diabetes

Two main types of diabetes mellitus can be distinguished:

Type 1 or insulin dependent diabetes mellitus (IDDM) has a juvenile onset; it

develops at any time from infancy to mid-thirties. The insulin production in the

pancreas comes to a complete stop and treatment with daily injections of insulin is

necessary to save the patient’s life. Various theories exist about the cause of IDDM;

two of them are mentioned here. IDDM has the hallmarks of an autoimmune disease,

Page 18

in which the immune system of the patient mistakes its own cells (the pancreas) for

microorganisms, and destroys them. Furthermore, diabetes is often seen after viral

infections. It is possible that the virus contains proteins that resemble the pancreas’s

insulin producing β-cells, which results in the destruction of both the virus and the

pancreatic cells by the immune system of the patient.

Type 2 or non-insulin dependent diabetes mellitus (NIDDM) develops in adulthood

and is often linked with overweight. The pancreas still produces insulin, but it is

insufficient, or the body does not efficiently use it. Sometimes, treatment with a low

carbohydrate diet and reduction of body-weight is enough to solve the problem. If not,

then oral medication1, to maximize the use of the remaining insulin, is necessary.

About 20 to 30% of the type 2 diabetic patients need insulin in the course of the

disease. The most important cause of type 2 diabetes is obesity, but also lack of

exercise, poor diet, age and mental stress play a role in the onset of the disorder.

Diabetes type 2 is 20 times more frequent than type 1 and it is characterised by a

scarcity of symptoms, which makes it difficult to detect (www.diabetes.org.uk).

Complications and symptoms

In people without diabetes the blood glucose level varies from 3.0 to 7.2 mmol per

litre. Diabetic patients would have, without medication, glucose levels that are much

higher. This condition of hyperglycaemia may lead to a variety of physical problems,

which can be divided in either acute or long-term complications. Acute complications

are polyuria, thirst, weight loss, lack of energy and blurred sight. Other symptoms are

tingling and numbness in hand and feet, slow healing wounds and frequent, recurring

inflammations, like fungal infections and boils. Elongated periods of hyperglycaemia

during life have a devastating effect on small blood-vessels and capillaries, which

may result in long term disorders, such as retinopathy (eye problems), nephropathy

(kidney failure), neuropathy (loss of sense) and cardiovascular disorders.

All type 1 patients and 20 to 30 % of type 2 diabetic patients need insulin, by daily

subcutaneous injections, to maintain the blood glucose level below 10 mmol per litre.

Sometimes the amount of insulin was too much for the food that was taken, which

may lead to very low levels of glucose in the blood or hypoglycaemia. This 1 Three main types of oral drugs for diabetes are known: the sulfonylurea derivatives stimulate the insulin producing β-cells of the pancreas to higher secretion, the biguanides stimulate the insulin receptor on the cells and the α-glycosidase inhibitors inhibit the breakdown of carbohydrates to mono-sugars in the gut.

Page 19

complication is characterised by symptoms as hunger, transpiration, paleness,

irritability, loss of concentration and a drunken appearance. Hypoglycaemia may lead

to coma unless glucose is given to the patient in the form of a sugar-lump or a soft

drink. If a patient slips into a coma, the remedy is an intra-muscular injection of

glucagon, a hormone that releases glucose from the liver.

The insulin-dependent patient is, with his diet and his injections, always balancing

between hyperglycaemia with the risk of long-term complications, and hypoglycaemia

that makes the patient feeling miserable within minutes. This requires the patient’s

knowledge about his diet in combination with his insulin regime and his physical

exercise.

There is no cure for the disease, though scientists are experimenting with

transplantation of Langerhans’ islets. The β-cells of the islets of Langerhans in the

pancreas are responsible for the insulin production.

Therapy

Therapy of the disease comprises controlling of blood-glucose levels by regular

measurements, medication (orally or by insulin injection) and adjustment of lifestyle,

all to be conducted by the patient on a daily basis. In the Netherlands general

practitioners often support diabetics with oral therapy, whereas specialists in internal

medicine together with ‘diabetic nurses’ take care of insulin-dependent patients.

Furthermore, the policy of the Dutch Diabetes Federation is to check each patient at

regular intervals. Every three months blood-glucose, weight and HbA1c2 should be

measured, combined with an annual screening of blood pressure, cholesterol, eyes,

feet and kidney function for every patient. In case of problems, check ups should be

performed more often and treatment of complications must be conducted. In these

regular check ups various medical specialists are involved, such as specialists in

internal medicine and nephrology, and ophthalmologists. Nurses specialised in

diabetes, dieticians and podiatrists give additional care.

Since the patient self is the most important therapist, he or she should be well

educated on matters concerning the disease. Diabetic knowledge should make it

possible to maintain proper blood glucose levels, which leads to a satisfying clinical

condition and feelings of mental well being and independence. Also the family of

2 HbA1c is the percentage of glycosylated haemoglobin in the blood, and is a measure for the average blood-glucose level over the past two or three months

Page 20

patients should be educated on diabetes in order to support the patient in the diabetic

regime. They also should know what to do in case of problems, such as

hypoglycaemia. In cases of diabetes type 1 in very young children the parents are

responsible for daily treatment of the disorder.

Photo 3. A Sri Lankan trader selling jaggery; a sugar-like sweetener made from

Kitul palm sap. The logs on the right serve as the raw material of an extract, which is

said to have blood-glucose reducing effect.

Diabetes patient education; an historical overview

The history of diabetic patient education has been linked with insulin therapy, which

took off in 1922 with treating the first patient with insulin injections. In 1929 Eliot P.

Joslin started the first diabetic teaching clinic in Boston, and five years later Robert D.

Lawrence founded the British Diabetic Association. The ideas of these early educators

were not accepted immediately by official medicine, because the participation of

patients in therapy was a threat against the authoritarian doctor-patient relationship.

However, when the importance of diabetes education was demonstrated in the

seventies, it became accepted as a part of the treatment (Maldonato, 1995; Assal et al.,

1997).

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Although the importance of patient education was recognised and teaching programs

were started in the USA and Europe, it turned out that the education was not adequate.

This inadequacy became clear during the annual meeting of the ‘European

Association for the study of diabetes’ in Geneva in 1977, where surprisingly over 400

physicians attended a meeting devoted to patient education. This has led to the first

European symposium on diabetes education, two years later, and the subsequent

foundation of the Diabetes Education Study Group (DESG). One of the aims of this

study group was to foster research in the fields of treatment and patient education and

to develop means of evaluating patient education programs. All persons who were

involved in treatment and education, healthcare workers as well as patients, were

invited to membership of the DESG. Three years of its foundation, 240 centres for

patient education throughout Europe were registered by the DESG, and also centres

for educational training of healthcare workers were initiated (Assal and Lion,1983).

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4. Diabetes patient education; theoretical background

The importance of diabetes education

The patient should know enough about his or her disease, in order to adjust lifestyle

and maintain healthy blood-glucose levels or normoglycaemia. The control of the

disease should lead to physical well-being and to the prevention or at least the delay

of long term complications. Furthermore knowledge of dealing with the disease may

lead to feelings of independence and mental well-being.

Teaching of patients differs from usual education in several ways. Firstly, the students

are patients, who didn’t choose to have this education out of interest but out of

necessity. As a consequence the learning process might be hampered by emotional

problems and fear. Secondly, the patients are not a homogenous group of students,

concerning former level of education. A group of patients might encompass all ages

and levels of intellectual abilities. The nature of their disease might differ, which

needs different levels of training (e.g. insulin or oral therapy). Thirdly, the doctor-

patient relationship is another one than the tutor-pupil relationship and a doctor is not

always a good educator (Day, 1983).

As in usual education two groups of participants are involved in patient education.

The first group is those of ‘teachers’, the health-workers who supply information and

education. The group of ‘students’ are the patients who gather information on their

disease. In the following sections I will pay attention to problems and solutions in the

field diabetes education. The two groups of participants will be discussed separately,

starting with the providers of information.

The providers of education

One of the first activities of the DESG was to draw an inventory of the obstacles in

patient education in diabetic centres throughout Europe. During workshops held from

November 1980 to July 1982 these difficulties were identified and ranked in order of

importance (Assal and Lion, 1983):

Poor patient motivation: Many physicians were frustrated by the indifference in their

patients. Poor motivation of patients is perceived as most important obstacle in

education, and this aspect will be discussed in the next section.

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Lack in educational training: Physicians need some knowledge of teaching methods

in order to teach their patients.

Organization of integration patient education with treatment: Lack of personnel,

proper classrooms, equipment and time play a role. Furthermore, the need for patient

education is often not recognized by the administration or health insurances.

Attitude of doctors, nurses and dieticians: For instance, health workers may become

bored with supervising monotonous diseases that are not curable. In combination with

unmotivated patients medical teams can suffer from a ‘burn-out’ syndrome.

One measure to meet the difficulties mentioned above is the installation of well-

trained and qualified diabetes teaching nurses in general hospitals, which cooperate

with other professionals, such as dieticians and social workers (Wasser-Heininger and

Jörgens, 1983). Both individual and group education are used; the choice of method

depending on the number of patients and staff availability. For the nerds among the

patients many clinics offer computer-based instruction, with special programs for

nutrition and for the treatment and prevention of hypoglycaemia (Maldonato et al.,

1995).

Very effective in the field of mass education of persons with diabetes are the lay

associations (Krall, 1995). There are many excellent lay organisations throughout the

world and 172 of them are united in the International Diabetes Federation (IDF). The

word ‘lay’ is not always correct, because some organisations were founded by

physicians, and have patient as well as professional members. Many associations

publish magazines with diabetic related issues and, of course, nowadays they spread a

lot of information on the Internet.

In the Netherlands the treatment as well as the information provided by health

workers is covered by health insurances. The brochures provided in hospitals and

pharmacies are often sponsored by pharmaceutical industries, such as Novo Nordisk.

Additional education by group sessions is provided by the Diabetes Vereniging

Nederland (DVN), however, these courses are often not free of charge.

A group comprised of health-workers and laypersons has established the Diabetes

Association of Sri Lanka in 1984, which is affiliated to the International Diabetes

Federation. The association provides clinical services, education and research through

the National Diabetes Centre (NDC) in Rayagiriya.

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Studies in Germany (Mühlhauser and Berger, 1993) and in France (Assal et al, 1997;

Bonnet et al, 1998) have shown that education programs are not uniform, but vary

among centres. Also the agenda in the monthly DVN magazine in the Netherlands

shows variation in courses in different parts of the country. The choice to follow these

additional courses, or to look for information from other sources depends on the

individual patient and his readiness or abilities to acquire the information. For these

reason it was decided to explore patient education in three different places in Sri

Lanka.

The receivers of education

In this section attention is paid to the difficulties on the patients’ side that may hamper

the education process. The lack of motivation, or unwillingness to seek or accept

information, is regarded as the most important obstacle. Motivation in the social

sciences is a concept that is used to explain why people think and behave as they do.

The concept motivation can be defined as the natural human urge for directing energy

to accomplish a certain goal. In the context of education, it is too simple to state that

there is no learning without motivation; it is more a matter of degree (Wlodkowski,

1999).

Although motivation is beneficial to the learning process, other factors also play a

role, such as mental abilities and language skills. The ability to accept and to

comprehend information is determined by the cleverness of the patient and on his

emotional state at the time of receiving the information. For example, consulting a

physician may bring patients in a state of anxiety, because doctors are often seen as

authorities. When the physician explains matters on the disease, the intimidated

patient may nod assent, even when he doesn’t understand anything of it. The latter

may leave the physician in the assumption that the message was clear.

In the field of adult education two perspectives on learning motivation are known,

respectively the intrinsic- and extrinsic point of view (Wlodkowski, 1999). In the

theories of intrinsic motivation, it is a part of human nature to be curious and active,

to initiate thought and behaviour, to make meaning from experience, and to be

effective at what is valued. The person’s cultural background is of paramount

importance in intrinsic motivation, because thought, behaviour, experiences, values

and emotions are all culturally determined.

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In extrinsic motivation models the focus for learning is on the use of extrinsic rewards

such as grades, money, prestige, and in cases of health education a better physical

condition. Wlodkowski illustrates this by the ‘carrot and stick’ metaphor. The learners

are expected to respond to these incentives, and if they don’t, they are held

responsible for their lack of motivation. The unmotivated learners are described as

lacking ambition or self-direction, and this implies that they are in an inferior position

to the instructor. An instructor holding this attitude may be unaware of the learners’

own determination and tends to keep them in a dependent position.

Wlodkowski advocates the intrinsic motivation approach in contexts of adult

education, and he considers the learners’ perspective fundamental. It is worth finding

out why people are (un)motivated to learn, and which social and emotional factors

play a role. Understanding these factors may help to improve the educational settings.

Maldonato (1995) and Assal (1997) both have inventoried the psychosocial factors

that affect the motivation to accept diabetes education and adjust the behaviour. Other

factors, such as enabling and socio-demographic features of individuals may also play

role. These three groups of factors are elaborated below.

1. Psychosocial factors

Degree of acceptance of the disease: The diagnosis of a chronic disease may

weaken the self-image of the patient and a process of mourning starts, which will take

a few months. The process goes through five phases: denial, revolt, bargaining,

depression with hope and finally acceptance. During the phases of denial and revolt,

the patient is unlikely to accept education, since he is not yet convinced that he has the

disease. During the bargaining phase he is ready to accept some aspects of the disease,

but not all (“I will use insulin, but only one shot a day”). In the depression phase the

patient still feels uncertain, but shows a great demand to learn, and finally, with

acceptance of the disease, he is receptive to information, suggestions and corrections.

Health belief: The health belief model, which was developed in the early

1950s by a group of socio-psychologists, was the first theory to explain health

behaviour. It is based on the hypothesis that health related behaviour is determined by

the desire to avoid illness or to get well, and the belief that certain behaviour will

affect the illness. In time other psychological models, such as Rotter’s social learning

theory and the theory of reasoned action by Fishbein and Ajzen, were introduced in

the field of health behaviour (Schut, 1990; Gebhardt, 1997). Although seeking for

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information can be seen as an act of health behaviour, the psychological models

mentioned above are, in my opinion, inappropriate to explore the patients’ motivation

to accept diabetes education. The reason for this is that the models take health related

information/knowledge as a starting point, whereas in the present study, the gathering

of this information is the ultimate goal. In Schut’s research, for example, the health

belief models are used to evaluate the effects of diabetic patient courses.

Health locus of control: The patients’ notions about the responsibility for

sickness and treatment determine their attitudes to education and self-care. People

who consider their health to be determined by luck, fate, chance, powerful others or

God are said to hold an external locus of control. Those who believe that health and

sickness are the result of their own behaviour have an internal locus of control. The

concept locus of control stems from Rotter’s social learning theory (Wallston et al.,

1976). Since the 1970s, Wallston and Wallston (1978; 1999) have developed and

refined multidimensional scales to measure the locus of control of subjects. These

tests are used to predict health related information seeking and behaviour. They are

based on personally worded statements, which are scored with a 6-point Likert type

scale of agreement (for instances: “I can pretty much stay healthy by taking good care

of myself” and “Having regular contact with my physician is the best way to avoid

illness”). Application of these scales in the field of diabetes by Schlenk (1984) has

revealed that persons with internal control perceptions were better able to seek and

use information, and benefit more from the help given by health authorities. However,

these internal oriented patients only did so when they valued their health highly.

Wallston (1976) has made comparable observations in the field of hypertension.

Although Maldonato and Assal did not mention it, the factor health value is added to

the list of psychosocial factors in this study.

Health value: The value of health is one of many other human values, which

can be defined as ‘an enduring belief that a specific mode of conduct or end-state of

existence is personally or socially preferable to an opposite or converse mode of

conduct or end-state of existence’ (Rokeach, 1973). Schlenk has explored the health

value of diabetics by using ‘health’ and nine additional human values, which had to be

ranked in order of importance by these patients. The values were selected from the 18-

item end-state value list designed by Rokeach. The scoring was based on the rank

given to health, a score of 1 indicating that this was most important for the

respondent.

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Social support: A factor that may positively influence the patients’ motivation

to seek for information is social support. Although they were not particularly aimed at

diabetes education, studies have shown that the attitudes of relevant others are

extremely influential in the patient’s compliances to the diabetic regimes (Assal et al.,

1997; Day, 1995; Maldonato et al., 1995). The relevant others are those people, who

make the patient feel loved and respected, and to whom he feels social obligations.

Spouses, family, friends and colleagues may give support, provided that the patient

has informed these people that he was diagnosed with diabetes. In the study of Assal

(1997), for example, it was observed that singles were not using the teaching

programs as much as diabetics with families. The attitudes of physicians, nurses and

peer-patients as well may have a positive influence.

2. Enabling factors

Enabling factors are those that determine the access to different educational

opportunities. Examples of enabling factors are:

Distance: A patient will visit a group course easier if it is given in the

neighbourhood.

Money: If a given course is too expensive, the patient may decide not to take

it. The factor money is associated with other variables, such as the profession and

wages of the patient.

Time: A busy life, with lots of social obligations, is not beneficial to the

patient’s motivation to take a course.

Supplies: Diabetics who visit public libraries or have access to the Internet

may read more diabetes related material than others. Patients with a video recorder

may seek for information on videotapes.

3. Socio-demographic factors

The psychosocial factors mentioned above are alterable within individuals. For

example, a person with an external locus of control may transform into an ‘internal’

when he experiences health improvement after weight loss and regular exercises. The

socio-demographic factors, on the other hand, are factual and more or less unalterable

for an individual (although he can change profession or marital state).

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The socio-demographic factors are:

Age

Sex

Marital state

Family size (number of children)

Level of education

Profession

Assal (1997) has observed that, next to unattached people, also the elderly and those

with a low educational level often refuse to visit patient courses.

This list of factors may be extended when the motivation to learn is explored in other

parts of the world. For instance, differences in ethnic affiliation or religion between

health-worker and patient may hamper the willingness to communicate. The aim of

this study is the exploration of factors that have an influence on the motivation of

patients in Sri Lanka to learn about the aspects of diabetes mellitus. I will deal with

these research questions and with the research design in the next chapter.

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5. Research questions, definitions and research design

Research questions

The choice for diabetes education as my research subject was inspired by the

observation of the differences in diabetic related knowledge among Dutch patients. I

would like to explore the differences in knowledge among Sri Lankan diabetic

patients, and moreover, their motivation to gain knowledge. These considerations

have led to the formulation of the main research question, which is:

Are diabetic patients in Sri Lanka motivated to learn about the aspects of their

disease?

Learning about the aspects of diabetes requires some sources of information, like oral

instructions and training by healthcare workers. Also brochures and books in shops

and public libraries, as well as the Internet can serve as sources of information.

Drawing up an inventory of these sources are addressed in the next sub-questions:

Which sources of information and education on diabetes mellitus are available for the

patients in Sri Lanka?

Are these sources of information and education uniform among diabetic

hospitals/clinics?

Many factors may have influence on the readiness to learn and on the effects of the

learning process, as became clear in European studies. Are the same factors relevant

to the Sri Lankan situations or is it possible to point out island specific factors? These

matters are addressed in the next sub-questions:

Which factors play a role in the motivation of diabetic patients to learn about their

disease?

Do the psychosocial factors have influence on motivation?

Do people have enough time and money to seek for information?

Do socio-demographic factors, such as age and sex, play a role in willingness to

learn?

Is it possible to define Sri Lankan specific factors that affect the motivation to learn

about diabetes?

The availability and the uniformity of diabetes related information in Sri Lanka has to

be explored among the providers of healthcare and patient education, whereas the

motivation to learn about diabetes must be investigated among the receivers, the

Page 30

diabetic patients. For these reasons I will deal with both parties separately in the

research design, as was done in the theoretical part of chapter 4. In the next section

the definitions of some concepts within the research questions are given, after which

the attention is turned to the research design.

Definitions

Diabetes mellitus: The World Health Organisation has defined this concept as:

a metabolic disorder of multiple aetiology, characterized by chronic hyperglycaemia with

disturbances of carbohydrate, fat and protein metabolism, resulting from defects in insulin

secretion, insulin action, or both.

The diagnosis is never made on a single blood-glucose test, but on a series of blood

tests in which the glucose levels must exceed certain levels. In cases of uncertainty

additional blood tests may be performed to confirm the diagnosis (WHO, 1990). The

study in Sri Lanka is aimed at Western based biomedical models and healthcare

practices, rather than traditional notions and remedies, assuming that diabetic patients

in Sri Lanka are also diagnosed by blood tests, according to criteria set by the World

Health Organisation.

Motivation: The concept of motivation can be defined as the drive of a person

for directing energy to a given task. The word finds its origin in the Latin word

movere, which signifies concepts like ‘move’, ‘agitate’, ‘push’ or set in ‘motion’. In

this project attention is paid to the motivation to seek for information and to learn

about diabetes, which enables the patients to control their own physical conditions.

Whether the patients are prepared to maintain appropriate health behaviour for longer

periods is not the issue of this research project.

Information: Within this document with information is meant all the written

and orally transmitted facts about the disease Diabetes mellitus that may be available

to patients. Not only facts about the physiology of the disease are relevant.

Information on treatment, the efficacy of insulin and oral medication, diets and the

risk of fat, foot-care and proper shoes, eye-care, short- and long-term complications,

impotence and renal failure may all be relevant for diabetic patients.

Education: The word ‘education’ has a very broad meaning in this document.

Education is the transmission of diabetes related information from a healthcare worker

to patient, for instance. People outside the medical circuit may also give the

information, like peer patients or other persons with diabetes related knowledge. This

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transmission may be informal, as in a discussion with a general practitioner, or it may

be institutionalised in a group session. Education does not only concern the

transmission of information, but also the instruction of certain diabetes related

practices, such as blood-glucose measuring, insulin-administering and foot-inspection.

Knowledge and skills: Just listening to the message is not enough in the

educational process. The diabetic patient has to understand and to remember the

diabetes related information and the instructions given to him. If the patient is able to

apply the information and instructions properly to his own situation we can speak of

the knowledge and the skills to control his own physical well-being.

Research design; the providers of education

Although the NDC offers a number of excellent services, not all the patients in Sri

Lanka are able to consult this centre. In the NDC and in two other hospitals an

inventory is drawn of on:

Health workers: Who are involved in treatment, screening and education of

monitoring of the patients?

Therapy and control: Which pharmacological supplies are available for the patients

(for instance: oral drugs, insulin types, blood-glucose meters)?

Education/information: How is education/information provided (individual or group-

sessions, during consults or in special meetings etc.)?

Media: Are books, brochures, cassettes or videos available? These sources may also

be found outside the clinic, for instance in pharmacies, bookshops or public libraries.

Expenses: Which institutions are paying for the consults, drugs and education of

diabetic patients in Sri Lanka (government, welfare organisations, pharmacological

industries, health insurances or the patients themselves)?

Referral system: Do patients in Sri Lanka need any referral to consult a medical

specialist, or is it possible (without financial consequences) to bypass local services

and general practitioners?

Time, equipment and knowledge: Do the health workers have enough time for each

patient and do they have the knowledge and means to provide proper healthcare and

education? For instance, studies by Chang (1997; 1998) have revealed some problems

with time for patients and lack of diabetic knowledge among non-specialist hospital

doctors in a clinic in Sri Lanka.

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Research design; the receivers of education

The focus of the study is on diabetes type 2 patients for several reasons. Firstly, this

type is much more common than the juvenile diabetes type 1, and it is thought to be

lifestyle related. Secondly, the mature onset of diabetes type 2 provides the patient

and me with a point of reference, the time of diagnosis. Thirdly, the lack of

knowledge is not immediately life-threatening in the case of diabetes type 2, and the

motivation to learn about the disease may depend on other variables, as listed below.

The responses of diabetes type 2 patients, to the offered information and education,

are investigated in part 1 of the questionnaire (Appendix 1).

The acquired knowledge of the respondents is tested with a set of 13 multiple-choice

questions, presented in part 2 of the questionnaire.

The factors or variables that affect the patients’ motivation to seek information and

education are discussed in chapter 4, and are summarised in the scheme below. For

some variables indicators are given that serve as an expedient for the design of

questions.

Psychosocial variables: Indicators for psychosocial variables

Degree of acceptance of disease time since diagnosis

feelings about having diabetes

Health locus of control items in HLC scales

Health value items in Value scale

Social support help, advise of others

Enabling variables: Indicators for enabling variables

Distance residence

Money wages

Time work hours, social obligations

Supplies having TV, books, computer

Socio-demographic factors:

Age

Sex

Marital state

Number of children

Level of education

Profession

Ethnic affiliation

Religion

These variables and their indicators are successively elaborated in the questionnaire

part 3 up to 5. To explore the locus of control and health value scales according to

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Wallston and Rokeach, respectively, are included in part 3. The other questions were

personally designed, though some adjustments in the questionnaire had to be made in

consultation with the health-workers in the field, before presenting them to the

patients. For example, I was given the advise to delete the question: “Where do you

live?” because many small villages and hamlets are too small for recording on the

map of Sri Lanka, and hence uninformative. Also questions on affordability of

courses were deleted because the health-workers at the NDC emphasize the

accessibility to healthcare and information for everyone.

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6. Research methods

The methods applied at the NDC

Approaching and interviewing the patients at the National Diabetes Center differed

from the methods used in the hospitals in Galle and Peradeniya (next section), due to

institutional differences. The NDC offers clinical screening for long-term

complications and patient education, whereas the patient‘s own physician performs

the actual treatment of the chronic diabetes. Many patients come to the NDC for

several screenings in a one-day-visit, which takes a few hours.

To overcome the language barrier and other practical problems, the junior medical

officer, who is responsible for group education at the NDC, provided assistance. On

my arrival she had already translated the questionnaire in Sinhalese, and on the first

day we started to adjust the questions to the Sri Lankan/NDC setting. For example,

irrelevant questions on visiting courses were deleted, because education is an integral

part of the screening visits to the NDC. Also questions on costs were deleted because

public transportation and screening at the NDC are affordable for everyone in Sri

Lanka. In the Sinhalese version of the questionnaire the medical officer used a

multiple-choice questions format (for instance: unmarried / married / widowed), so I

could read many of the answers without her help. Because many questions had to be

filled in by the patients themselves, for example the knowledge test, the locus of

control- and the health value scales, we decided to use one copy of the questionnaire

per patient.

All the diabetes type 2 patients that use the facilities at the NDC formed the

population under investigation. It was not possible to select a sample of patients in

advance, because many variables, such as ethnicity, marital status or level of

education, are not recorded at the NDC. We sought for volunteers to participate in the

research project as follows:

Every morning at about 09.00 AM, when the waiting rooms are crowded, the patients

and their accompanying family members are requested to join the teaching session in

the conference room. During my stay I always joined the group teaching sessions,

which were presented by the medical officer. At the end of the sessions she introduced

me, said something about the project and asked for volunteers (I guess, because it was

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all in Sinhalese. One day a patient was so thoughtful to ask the medical officer to do

her presentation in English, because that tall white lady might not understand her).

The people that volunteered were provided the questionnaire on a clipboard, and we

gave them instructions to fill it in. The medical officer helped the Sinhalese

speaking/writing patients, whereas I took care of the English-speaking respondents.

The people that volunteered immediately after the teaching session were often well-

educated, talkative males, and this group is over-represented in the sample. I orally

interviewed the patients who could not read because of dilated pupils (after

ophthalmologic screening), or those who had forgotten their reading glasses, or people

who just liked it that way. There were no differences between the written and the oral

responses, although some people tried to get the right answers from me while making

the knowledge test.

Photo 4. Dr. Subhanee, the medical officer who provides patient education,

is seeing a patient.

On those days when nobody volunteered after the teaching sessions I approached the

people in the waiting rooms. This was not easy, because family members

accompanied many patients, and I couldn’t tell who were the diabetics. Sometimes it

helped when people had a band-aid on the inside of the elbow. The authority of the

Page 36

doctors was also very helpful and sometimes they asked (or told) their patients, at

some stage in the consult, to talk with me.

The numbers of interviewed patients, and their socio-demographic characteristics are

discussed in chapter 8.

The methods applied in the hospitals

On my introductory visit to the General Hospital in Galle, Dr. Weerarathna advised

me not to approach the patients in the waiting rooms during the clinic hours. These

waiting rooms are extremely crowded; the patients are hurrying and constantly

queuing up. Furthermore it is almost impossible to find the diabetics among these

patients, and moreover only few may speak English. He advised me to approach

diabetic patients that were hospitalized and had to spend their days in the wards, either

for diabetes complications or any other physical problem (I was easily convinced after

a visit to the overcrowded main entrance hall in the hospital).

To find and approach the diabetic patients in the wards I was assisted by two helpful

young doctors. Actually these ladies performed all the interviews (30 in total), mostly

at the patients’ bedsides, because hardly anyone of them mastered the English

language. Walking around in Galle fort I happened to meet two diabetic patients, who

volunteered for an interview. Both were patients in the private sector and were orally

informed about diabetes by their physicians.

In the General hospital in Peradeniya the same strategy was used as in the hospital in

Galle. I was allowed access to the diabetic patients in the wards, but because of the

language barrier, another young doctor kindly volunteered to approach and interview

the patients (a total of 22).

Remarks on the research methods

Drawing inventories on the clinical and educational services was mainly done by

informal conversations with the doctors who assisted me. The inventory on the

services in the NDC is more comprehensive than those in the hospitals, because I

spent more time in this place and I was provided with a very informative Annual

Report. Furthermore, the NDC aims at education of diabetic patients and the general

public, including foreign students.

In the General Hospitals diabetes is just one of many disorders that are treated within

the clinical discipline of Medicine (interne geneeskunde).

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Because no educational group courses are given in either hospital, the questionnaires

used in the NDC needed some minor adjustments. The young doctors helped me with

the alterations in the Sinhalese version. The English version of the questionnaire, with

the adjustments for the hospitals is provided in the appendix 1 of this document.

The research proposal stated that Diabetes type 2 patients in Sri Lanka formed the

population under study, because the lack of knowledge is not immediately life

threatening in case of this type of diabetes. However, we included seven young insulin

dependent type 1 patients in the panels of respondents (four at the NDC, two in Galle

and one in Peradeniya) out of curiosity, to find out how they scored on the diabetic

knowledge test.

Photo 5. The General Hospital in Peradeniya on a Sunday morning. On working

days the place is very crowded.

The complications of diabetes or diabetes related health problems might have

influence on the motivation and the knowledge of patients. For example, a patient

who has already lost some sensation in his feet might be more interested in

information about foot care, whereas a patient on insulin therapy may look for

Page 38

information on hypos. These medical aspects of diabetes are not included in the

questionnaires. In conversations with the patients I also avoided the medical aspect of

diabetes as much as possible, for several reasons. Firstly, I may be quite well

informed about diabetes, but I am not a doctor. While discussing medical aspects I

might have said things that are conflicting with the advise of the patient’s physician.

Secondly, although the patients in Sri Lanka appeared to care less about privacy than

patients in the Netherlands do, I hold the opinion that they don’t have to tell a foreign

student about their medical problems. Thirdly, as I am not experienced in contacting

chronic patients, I was afraid that my reactions to their severe health problems might

be inappropriate.

Page 39

7. The providers of education; an inventory

The National Diabetes Center and the Diabetes Association of Sri Lanka

The first seven weeks of the research project were carried out at the National Diabetes

Center (NDC) in Rajagiriya, a few kilometers outside of Colombo, the capital of Sri

Lanka. This institute was established in 1995 in a brand new building, donated by the

people of Canada and by many local benefactors. The NDC is the headquarters of the

Diabetes Association of Sri Lanka (DASL), a non-governmental organization, which

offers clinical services and education to the public.

Studies in the last decades (Wijesuriya, 1997) by members of the DASL have

revealed the sharp rise of diabetes type 2 in Sri Lanka, due to changing lifestyles. The

costs of diabetes and its severe long-term complications may become a tremendous

burden on the healthcare system of Sri Lanka. The DASL works hard to reverse this

trend and tries to evoke awareness on the risks of the disease among the general

public. In the activities of the association the emphasis is on the prevention of diabetes

type 2 and its long-term complications, through the promotion of healthy diets and

lifestyles.

The NDC offers patient education and clinical services for detection and treatment of

the early signs of complications. Early detection and adequate treatment may avoid

blindness, loss of feet and renal failure. The services are made accessible for all the

diabetic patients in Sri Lanka. The costs are kept at an affordable level and nobody is

refused for lack of financial resources. Whenever necessary a 50% or 100% discount

is possible for the needy people. Although doctors refer their patients to the NDC, a

referral is not necessary to use the services of the center. The patients should make

appointments for their visits; however, if someone shows up unexpectedly he will not

be sent away.

Clinical services at the NDC

The services at the NDC are carried out by four medical officers, one senior medical

officer, two nurse educators, two biochemists and two lab-technicians, all being

female. Administrative and cleaning staffs of respectively five and two persons assist

this medical team. The clinical services listed below are made available:

Neuropathy clinic: for the detection of loss of sensation in hands and feet.

Page 40

Eye clinic: Retinopathy or damage of small blood vessels in the retina of the eye is

examined by ophthalmoscopy through dilated pupils.

Nephropathy clinic: Damage of small blood vessels in the glomeruli of the kidneys

may lead to problems in kidney function. Waste products remain in the blood with

toxic effects, whereas essential blood-proteins are lost in the urine.

Vascular clinic: Arteriosclerosis develops at an earlier age in people with diabetes and

may eventually lead to heart attacks and strokes.

Cardiology clinic: An ECG is made to detect abnormalities in functioning of the

heart.

Healthy lifestyle clinic: Overweight and obese patients are offered analysis of their

weight problem. A cardiac risk profile, made with a Body Stat machine, is used to

advise persons on adjustment of risky behavior. A clinic especially for overweight

children has been started aiming at the prevention of diabetes type 2.

Insulin Bank: The bank was inaugurated in 1998 and is supported by benefactors. It

serves about 250 children with type 1 diabetes that need insulin on a daily basis to

survive. The DASL purchases high quality human insulin from Western

pharmaceutical industries to serve these young patients.

Young people’s diabetic clinic: This is held on alternating Saturdays, exclusively for

the young patients registered at the insulin bank. In general 20 to 30 patients from

different parts of the country attend the clinic. They receive the clinical services,

stocks of human insulin, blood-glucose monitoring devices, food and nutritional

replacements.

Laboratory services: A variety of tests are performed on blood and urine samples of

the patients.

All complications of diabetes can be tested on one day in a ‘single visit screening’.

The results of physical examinations and laboratory test results are combined and

recorded in a comprehensive rapport, which is made available to the patient and his

doctor. An integral part of the ‘single visit screening’ program is the educational

component that will be discussed in the next section.

Educational services at the NDC

Group education is provided on a daily basis by one of the medical officers. These

sessions in Sinhalese are held at about 09:00 AM when most patients have arrived for

the ‘one visit screening’. The spouses and family members who accompany the

Page 41

patients join these sessions (as well as a Dutch student of Anthropology). The

contents of the sessions are more or less the same each morning, however, extra

attention may be paid to diabetes related problems of patients that the medical officer

has already seen in the morning. The sessions are held in an informal atmosphere and

there is opportunity for the patients to ask questions.

The nurse educators and the medical officer responsible for patient education provide

information on an individual basis. At the end of the day the results of the physical

examinations and the laboratory tests are shown and explained to patients who came

for blood tests or a ‘single visit screening’. In contrast to the group education the

contents of these individual sessions vary, because the physical problems of the

particular patient are discussed. The patient has the opportunity to raise his or her

questions, which leads to mutual communication, rather than to a monologue from the

educator.

Brochures that are handed out to patients during their first visit to the NDC provide

written information. The titles of these brochures, which already give impressions of

their contents, are listed below.

“Balancing your blood-glucose: a guide for people with diabetes”

“Understanding the complications of diabetes mellitus”

“A positive approach to diabetes” This brochure deals with the emotional aspects of

having diabetes, and suggestions are given how to cope with negative feelings.

“A foot owner’s manual” is about foot-care and –control by patients themselves.

“Your eyes and teeth matter too”

“Exercise and diabetes”

“Control your diet through proper dietary habits”

Brochures for special groups are:

“Diabetes and Pregnancy”

“Just like any other kid”, with information for parents with a diabetic child.

“Your student with diabetes”, a practical guide for teachers.

The brochures are available in English, Sinhalese and Tamil.

.

Other activities of the NDC

Concerning information and education on diabetes the NDC serves many more people

than just the visiting patients. Public awareness is increasing and the NDC receives

inquiries from all over the island. Schoolchildren and students in particular ask for

Page 42

information on the basic facts of the disease and on healthy lifestyles. The NDC

provides information to anybody who asks for it.

Photo 6. The staff of the National Diabetes Center is posing for my husband

in front of the building.

In recent years the NDC has held workshops for the education of paramedical and

medical staff. Public awareness lectures and screening clinics were conducted in other

places. Indirect information was given via printed and electronic media. Several

articles on diabetes were published in newspapers and the brochures for patients are

also used in other clinics. In 2000 personnel of the NDC has participated in radio

programs to evoke public awareness of the disease.

In July 2002 the DASL hosted the fourth International Conference on Diabetes in

Asia. The purpose of the conference was to arrive at an etiological consensus that

should be the basis of primary prevention strategies. A panel of international experts

has reached an agreement, and a copy of the consensus document is provided in

appendix 2 of this document. One of the goals in the prevention of diabetes type 2 is

the treatment of childhood obesity, and the NDC has recently started to approach

principals of schools for A-level education. With a letter these principals are requested

Page 43

to refer the obese children in their schools to the obesity clinic of the NDC. A copy of

this letter is provided in appendix 3 of this document.

The General (teaching) Hospitals in Galle and Peradeniya

By convention in Sri Lanka teaching hospitals are defined as institutions affiliated to

University Medical facilities and engaged in the training and turnout of medical

graduates. There are seventeen teaching hospitals, including those in Galle and in

Peradeniya. The hospitals are part of the public medical sector in Sri Lanka, which

provides more than 95% of inpatient services, largely free to the patients. As in most

developing countries health insurances hardly exist on the island. The public health

sector has centralized purchasing of essential drugs, mostly from Asian

pharmaceutical industries. These drugs are provided mostly free of charge in the

public hospitals. If patients don’t want to wait in line at the drug counter, they can buy

it at a pharmacist outside the hospital.

Outpatient care is largely provided by full-time private practitioners and by

government doctors working in their private clinics during off-duty hours. Patients,

who can afford it, use the private sector to avoid the crowded public hospitals, and

they pay out-of-pocket for these services.

The General Hospital of Galle is situated in Karapitiya, a few kilometers from the

center of Galle. The teaching hospital and the adjacent Faculty of Medicine are part of

the Ruhuna University in Matara, a town situated 45 km east of Galle. The faculty

was built in the early eighties and the courses started in the academic year 1983/1984.

The University units in Medicine, Surgery, Pediatrics and Psychiatry are located in

this teaching hospital, whereas the department of Obstetrics and Gynecology is

situated in the premises of the old hospital at Mahamodera, a neighborhood along the

road to Colombo.

The diabetic patients in the General Hospital attend the (very crowded) clinics of the

unit of Medicine; specialized diabetic clinics are not available. During the

consultation in the clinic the patients receive oral information about the disease.

Furthermore leaflets in Sinhalese on diabetes are available. The patients are requested

to make copies of these leaflets though, because the hospital lacks funding. In these

leaflets the emphasis is on diets to control the blood-glucose levels. Most type 2

diabetic patients receive oral drugs for the treatment of the disease, and have to

Page 44

combine these with a diet. Insulin is available in Sri Lanka, but not the high quality

human insulin that Western patients have access to. The patients that volunteered to

be interviewed were hospitalized in the wards of the discipline of Medicine.

The General Hospital of Peradeniya and the General Hospital in Kandy as well are the

teaching hospitals of the Peradeniya Medical School. This school started in 1962 as a

branch of the Colombo Medical School, but became an independent Faculty in 1967,

when the University of Peradeniya was established as a separate entity. The General

Hospital in Peradeniya was opened in 1980 and holds all the Professorial clinical

teaching units. The patients, who come to the clinics for any medical problem, first

consult the outdoor patient department (OPD), where they are screened and then

referred to specialized clinics.

A special diabetes clinic is run every Saturday morning at the General hospital, and is

attended by many. The average attendance is 174 patients within four hours, with

three doctors available (Mulgirigama and Illangasekera, 2000). This means that the

consultation time is only four minutes per patient. Most diabetic patients are invited to

visit the clinic once a month. On arrival in the hospital they start with drawing of a

blood-sample, so that the fasting blood-glucose level is known at the time of consult.

The patient leaves with a recipe for oral drugs enough for the next month. During the

clinics the patients receive oral information, and leaflets are provided. About three

months before I came to Peradeniya a specialized diabetes educator was installed, to

replace the information on leaflets. Within the wards of the ‘Department of Medicine’

hospitalized diabetic patients were approached for cooperation, however, none of

these patients had visited the educator.

The educational services at the NDC are more sophisticated than those in the teaching

hospitals. This does not imply that the doctors in the hospitals are ignorant of the

importance of patient education. On the contrary, they showed a lot of concern about

the teaching of patients during our conversations. On November 17th I was invited at

the NDC, for the Sir Frank Gunasekera3 Memorial Lecture, delivered by Prof.

Illangesekera from the teaching hospital in Peradeniya. In this lecture, entitled

“Managing Diabetes in Sri Lanka: Problems and Pitfalls” the speaker gave an

overview of the problems that hamper the medical services and education for the

3 The clinical and educational services at the NDC are mostly financed by the Sir Frank Gunasekera Trust.

Page 45

diabetic community in Sri Lanka. The identification of these problems may lead to

solutions to improve and extend the educational services. The DASL has already

established branches in Galle and Peradeniya to inform the community in these areas,

and these branches are in the process of developing regional diabetes centers.

Photo7. The main entrance of the General Hospital in Karapitiya, Galle.

Other sources of information

Information about diabetes appeared to be hardly available outside the hospitals and

the NDC. I have visited many bookshops in the capital Colombo (on Galle Road in

particular) and a few in Kandy, and have found only one English book about diabetes

for the general public. This book: Living with Diabetes, written by R. Buckman and

published by the British Diabetes Association, was available in the bookshop in the

shopping mall of the Oberoi hotel. Some bookshops had medical textbooks with facts

about diabetes; however, these were meant for medical students and other health

professionals.

The public libraries in Colombo and in Kandy both had one American book about

diabetes. The book in the Kandyan library, which was entitled Diabetic Manual for

the Patient (1963), was written by E.P. Joslin, who also started the first diabetic

Page 46

teaching clinic in 1929. Books in Sinhalese on diabetes were not available, at least not

in the shops and libraries were I asked for them.

Leaflets with information for patients about all kinds of mental and physical disorders,

as we often see them in Dutch pharmacies and physicians’ waiting rooms, were not

present in the Sri Lankan pharmacies, which I visited. Whether brochures and leaflets

are available in the private medical sector in Sri Lanka was not investigated.

On the Internet information on diabetes is widely available, provided that the patient

masters the English language and has access to the Internet. I have asked the

employees in an Internet-cafe in Kandy, whether Websites on diabetes in Sinhalese

were available. They have assured me that Sinhalese was not used at all on the

Internet.

Fortunately, health issues are often discussed in the newspapers in Sri Lanka. During

my three-month stay I have read newspapers like the Daily News, The Island and the

Sunday Observer, and came across articles about diabetes. On November 14th, which

is World Diabetes Day, a complete page in a Sinhalese newspaper was dedicated to

diabetes and the activities of the NDC.

Page 47

8. The receivers of education; socio-demographic features.

Sex and age distribution

Although all the diabetes type 2 patients in Sri Lanka (with access to information)

formed the population under study, patients were approached at only three places: in

the NDC and in the wards of two teaching hospitals. Based on these places of

sampling the respondents can be divided in three main groups, of which two groups

are much alike. The visitors of the NDC were ambulant and came for screening of

complications. These patients knew about the existence of this center, which is an

indication for some diabetic knowledge. The hospitals in Galle and Peradeniya are in

the public health sector and healthcare is free of charge. It is to be expected that

patients who consult doctors in these hospitals are relatively poor. Furthermore they

were hospitalized and hence ill at the time of interviewing, which may have

influenced their answers.

The numbers of male and female patients in the three places are summarized in the

table below (For the statistic analyses, tables and figures in this document the package

SPSS version 7.5.2 for Windows was applied):

In total 79 males and 46 females volunteered to be subject in the investigation. As

mentioned earlier, in the NDC the talkative gentlemen in particular approached me for

an interview after the teaching sessions. In this center 69% of the respondents was

male, versus 53% and 59% in the hospitals.

In the explorations of the age distribution within the panel of respondents the seven

young type 1 patients, who were all younger than 30 years, are excluded. In figure 1a

49 22 71

69.0% 31.0% 100.0%

17 15 32

53.1% 46.9% 100.0%

13 9 22

59.1% 40.9% 100.0%

79 46 125

63.2% 36.8% 100.0%

NDC

Galle

Peradeniya

place

Total

male female

sex

Total

Table 1. Sex of respondents in three places of res earch.

Page 48

the age division by sex is represented, whereas figure 1b gives an overview of the

ages of respondents in the three places of research.

The age distribution for the type 2 patients shows a standard normal distribution (data

not shown), with a mean age of 52.7 years. Figure 1a shows that males may become

diabetics at a younger age than females do. The chance to get diabetes increases over

the years. After 60 years of age, however the percentage of patients may decrease

because of death or inability to visit the clinic.

The age ranges of the patients visiting the NDC and those visiting the hospital in

Galle are comparable, although the NDC have more patients in the younger groups.

figure 1a. Age and sex distribution.

age category

70-7960-6950-5940-4930-39

Per

cent

50

40

30

20

10

0

sex

male

female

Figure 1b. Age division in three places.

age category

70-7960-6950-5940-4930-39

Per

cent

70

60

50

40

30

20

10

0

place

NDC

Galle

Peradeniya

Page 49

The age range of the patients in Peradeniya hospital is narrow, and 60 percent of them

are in their fifties. It must be kept in mind, however, that the group represented in blue

concerns 20 patients only, and an extension of this panel might easily have led to

changes in the age distribution.

In the past diabetes type 2 was considered a disorder of aging people (ouderdoms

diabetes), but today more and more adolescent Westerners have the disorder. Also at

the NDC patients below 20 years of age are seen, of whom blood tests have shown

that they suffered from type 2 instead of diabetes type 1.

Ethnicity and religion

Sri Lanka is a multi-ethnic society and these ethnic groups adhere to different

religions. In the questionnaire the respondents were asked to mark their ethnic

affiliation and their religion. For ethnicity we used the categories: Sinhalese, Tamil,

Muslim, Burgher and Other, please specify, and for religion an open question was

included. The ethnic category Muslim is not correct, because it is refers to religion.

We decided to include this category for the following reason: The Muslims in Sri

Lanka have different ethnic backgrounds, for example Moor, Malayan or Tamil. To

include all the possible Islamic ethnic groups seemed a bit overdone. To skip the

category of Muslim and group them under Other, please specify would have been

inappropriate. According to the junior medical officer it was offending to mention the

Tamil and Burgher minorities, and ignore the Muslims groups in the questionnaire.

Mistakenly I assumed that all respondents calling themselves Christian were Roman

Catholics. When I asked two of them to specify their religion they appeared to be

Protestant (Methodist). Unfortunately the numbers of Roman Catholic and Protestant

respondents within the group of Christians remain unknown.

In the panel 83.5% is of Sinhalese origin (Table 2). Most of them (83.2%) are

Buddhist, and a considerable number (16.8%) are Christian. The Tamils are, with

18% of the population, the largest minority in Sri Lanka, whereas only 7% is Muslim.

In the panel of respondents their numbers are, respectively, 6.6% Tamils and 9.9%

Muslims. This higher number of Muslims in the panel may be the result of the places

of sampling. These places of research are in the Southern part of the island, whereas

the Tamils live mostly in the Northern parts. The higher representation of Muslims

may also be due to their diets; the health workers assured me that practicing the

Page 50

Ramadan is very unhealthy with respect to diabetes (“All the Muslims in the fort have

diabetes”, is what my landlady in Galle told me).

Not included in the table are respondents with either ‘other religion’ or ‘other

ethnicity’. One of them was Chinese and Buddhist, whereas a Sinhalese female

patient called herself a freethinker. Two respondents did not answer the questions on

ethnicity and religion. Although the Burghers in Sri Lanka are thought to hold a

Western lifestyle, this group is not represented in the panel of respondents.

Marital status and children

In table 3 the distribution of marital status and number of children of the respondents

is represented. In this table the young type 1 patients are excluded again, though one

of them, a 26-year-old Muslim lady, was married. She told that her husband had left

her because of her diabetes, after she had lost a child due to intra-uterine death. It is

quite understandable that this lady is very unhappy about having diabetes.

In the Sinhalese version of the questionnaire it was not wholly clear that the number

of children was asked. Many respondents just answered with only yes, yielding a

category with unknown number in the table.

Within the group of 117 type 2 patients (1 missing) 106 are married, and only three of

them are without children. Having one or two children is most common within this

panel, and is observed in 42% of the cases. Three or four children, in 28% of the

cases, follow this. As much as 101 respondents have children (at least one) still living

84 84

100.0% 100.0%

83.2% 69.4%

6 6

100.0% 100.0%

75.0% 5.0%

12 12

100.0% 100.0%

100.0% 9.9%

17 2 19

89.5% 10.5% 100.0%

16.8% 25.0% 15.7%

101 8 12 121

83.5% 6.6% 9.9% 100.0%

100.0% 100.0% 100.0% 100.0%

Buddhist

Hindu

Muslim

Christian

religion

Total

Sinhalese Tamil Muslim

ethnic background

Total

Table 2. Ethnic background and religion of the resp ondents.

Page 51

in their household (not displayed in table 3). Eight respondents have lost their spouse

by bereavement. Three of them are unmarried, one of them being a Catholic priest.

Level of education and profession

The respondents were asked to indicate their level of education, and in the question

we included the answer categories primary education (grade 1-5), O-level (grade 6-

10), A-level (grade 11-12), university and other, please specify. Only six persons at

the NDC marked the category other, and specified their vocational education, next to

the formal education. I decided to skip this category and used only the first four

categories. The level of education is expected to be lower among poorer patients,

those who use the facilities in the General Hospitals rather than those turning to the

Figure 2. Level of education versus place.

level of education

universityA-levelO-levelprimairy ed

Per

cent

age

of r

espo

nden

ts

70

60

50

40

30

20

10

0

place

NDC

Galle

Peradeniya

3 3

100.0% 100.0%

3 46 31 11 2 13 106

2.8% 43.4% 29.2% 10.4% 1.9% 12.3% 100.0%

3 2 1 1 1 8

37.5% 25.0% 12.5% 12.5% 12.5% 100.0%

6 49 33 12 3 14 117

5.1% 41.9% 28.2% 10.3% 2.6% 12.0% 100.0%

unmarried

married

widowed

maritalstatus

Total

none1-2

children3-4

children5-6

childrenmorethan 6

unknownnumber

Number of children

Total

Table 3. Marital status and number of children with in the panel of respondents.

Page 52

NDC. This assumption is confirmed by the observations in figure 2. Among the

visitors of the NDC most patients followed O-level education, but considerable

numbers had A-level- or university education, respectively 26.1% and 20.3%. In Galle

most people had O-level education, and only few made it through A-level or

university, both 6.3% (two persons). In Peradeniya primary education is observed

most often, however the percentages of respondents with A-level and university

education, both 13.6% (three persons), are higher than those in Galle.

In open questions the respondents were asked to mention their occupation, and wide

variety of answers were the result. These occupations are categorized within the Sri

Lankan context, according to the ten ‘Major Occupational Groups’ as listed by the

Department of Census and Statistics in Sri Lanka (www.statistics.gov.lk). The groups

are listed in table 4, in which the categories Elementary and Unidentified occupations

were combined for this study. The advantage of these occupational groups is the

division in ‘line of business’, in combination with an element of ranking.

Decisions were made (with the help of a native English speaker) on scaling the

professions of the respondents. For example ‘banker’ is placed under Professionals,

whereas ‘bank employee’ is sorted in the group of Sales & service workers. Many

terms are used to indicate that people are selling commodities, such as businessman,

salesman, ‘in business’ and storekeeper. All these professions are sorted within the

group of Sales & service workers, with the risk of underrating some very successful

rich entrepreneurs. In the group of Professionals respondents are included, who may

have had higher vocational- or university education. In this category engineers,

policemen, teachers and lawyers are placed. With Technicians & associate

professionals we were thinking more about ‘on the job’ training, such as technicians

and mechanics. The single carpenter within the panel of respondents is also placed

into this group, and this resulted in the empty categories of Craft & related workers

and Plant & machine operators. Under Clerks we included secretaries, stenographers

and peons. One person stated to be self-employed and one answer was unreadable.

This small category of Unidentified is here combined with group of Elementary

occupations (9). The distribution of occupational groups (with an group for

unemployment) in the panel of diabetic patients is represented in figure 3.

Page 53

Many women in the panel of respondents are without paid jobs. Most of the male

workers are professionals or are in business. In table 4 the percentages of the different

occupational groups is compared with the figures of Sri Lanka as a whole, as was

estimated in the year 2000, by the Department of Census and Statistics. The

unemployed respondents are excluded from this table.

Table 4. Comparison of division in occupational groups.

Occupational group Sri Lanka Panel of

patients

Senior officials & managers

Professionals

Technicians & associate prof.

Clerks

Sales & service workers

Skilled agricult. & fishery workers

Craft & related workers

Plant & machine operators

Elementary & unidentified

1.2 %

4.7 %

5.0 %

4.2 %

12.2 %

26.0 %

16.2 %

5.8 %

23 + 1.8 %

14.5 %

26.1 %

10.1 %

11.6 %

20.3 %

7.2 %

-

-

10.1 %

Figure 3. Occupational groups and sex.

occupational groups

unemployed

elementary/unidentif

skilled agricultural

sales/service worker

clerks

technicians/associat

professionals

senior officials/man

num

ber

of r

espo

nden

ts

40

30

20

10

0

sex

male

female

Page 54

In Sri Lanka about half of the population is employed in agriculture, fishery or

elementary jobs. Another 16.2 % has jobs in craft and related occupations. About 15

percent of the workers (upper four groups) have jobs, which are physically less

strenuous. Among the interviewed diabetic patients the figures are different; only 17%

have to do laborious work for a living. Most respondents have jobs in the upper

occupational groups of the table, which are more prestigious and physically less

demanding. From this table the influence of lifestyle on the development of diabetes

type 2 becomes evident; people who have to exert themselves physically are less

likely to contract diabetes.

Medical factors

The only medical aspects of diabetes that were explored in the panel of patients were

the time since diagnosis and the drugs that they used. These features of the patients

are included in this chapter because they are factual, as are the other factors

mentioned above.

In some cases of diabetes type 2 a diet is enough to maintain proper blood-glucose

levels. In general though, these patients need some oral medication to enhance the

uptake of sugar from the blood. In more severe cases, or in the course of the disease,

the patient might need insulin injections. Also with oral or insulin therapy the patients

have to hold a strict diet.

The same trend in therapy during the course of the disease is observed among the

patients who cooperated in this study, and is represented in table 5 (Kendall’s τ =

0.317, Sign. 0.005). In this table the seven youngsters with diabetes type 1, who need

insulin injections with the onset of the disease, are excluded.

12 34 3 49

24.5% 69.4% 6.1% 100.0%

2 26 7 35

5.7% 74.3% 20.0% 100.0%

1 22 9 32

3.1% 68.8% 28.1% 100.0%

15 82 19 116

12.9% 70.7% 16.4% 100.0%

up to 5years

5 - 10years

more than10 years

timesincediagnosis

Total

only dietoral

drugs insulin

therapy

Total

Table 5. The time since diagnosis versus bloodglucos e reducing therapy

Page 55

Enabling factors

The enabling factors are those that determine the patients’ access to information, such

as time, financial and other resources, and living distance to sources of information.

The issues of living distance and supplies are covered in the next chapter. The factor

money does not play a pivotal role in the access to information, because the services

in the NDC and the hospitals, as well as public transportation to get there are

affordable for anyone. Moreover, patients were interviewed who had already taken the

effort to visit the doctors. Those patients who stayed at home because of lack of time

and money are not included in this project.

Page 56

9. The motivation and the diabetic knowledge of the patients

The aim of this study was to investigate whether diabetic patients in Sri Lanka are

motivated to learn about their chronic disease diabetes. Indicators of the patients’

motivation to learn are their information seeking activities. This behavior is explored

by specific questions to the patients, which are discussed subsequently in three

sections hereafter. Another indicator of the motivation to learn is the actual

knowledge about diabetes. The knowledge of the patients, which is tested by multiple-

choice questions, is discussed in the second part of this chapter.

Oral information by doctors and nurses

The first set of questions was meant to find out whether the patients do approach the

treating physicians for information. These questions were:

1. Do doctors and nurses tell you facts about the disease?

2. Do you understand everything they tell you?

3. If not, do you feel free to ask for an explanation?

4. Do you feel free to ask other questions (related to diabetes) in the clinic?

The answers to these questions are summarized in table 6.

All the patients who answered the first question, are informed by their doctors. The

patient with ‘other answer’ replied this question with ‘sometimes’. Only six patients

out of the 121, who answered the second question, had problems to comprehend

everything what was told. Two persons felt inhibited to ask for an explanation,

whereas the third person with ‘other answer’ had this problem sometimes. Two

patients felt withdrawn to ask other, diabetes related questions (one patients answered

‘no’ both question 3 and 4). With only a few exceptions the communication between

the health-workers and the patients appears to be surprisingly well. I was expecting

117 99.2% 115 95.0% 108 97.3% 118 98.3%

6 5.0% 2 1.8% 2 1.7%

1 .8% 1 .9%

yes

no

otheranswer

%

1.doctors tell?

%

2.do youunderstand?

%

3.ask forexplanation?

%

4.otherquestions?

Table 6. Answers to questions about communication w ith physicians.

Page 57

that the patients might feel anxious or intimidated when consulting an authority like a

medical doctor (I always feel timid when visiting a doctor in the Netherlands, and

often forget about the questions I had). The figures in table 6, however, are confirmed

by my observations in the clinic rooms of the National Diabetes Center and in the

hospitals. The medical officers at the NDC discus the test results with their patients, in

an informal and friendly way. These discussions were most often in the form of

mutual conversation, rather than one-way lectures. Many patients visit the diabetes

clinic on Saturday morning in Peradeniya, and although the doctors are restricted in

time and manpower, each patient receives dedicated attention. When I showed

unexpected in the clinic to look around, Prof Illangasekera even took a few minutes to

talk with me between seeing patients. The doctors I have met in the three institutes

(the juniors as well as the senior lecturing doctors) were friendly and not intimidating

at all.

Written information and teaching sessions

Another set of questions was formed to explore whether the patients used other

sources of information, provided in the NDC or in the hospitals. In the NDC every

morning the medical doctors enter the crowded waiting rooms and request the patients

to go to the conference for the daily teaching session. Furthermore the patients receive

leaflets on their first visit to the NDC, but only on leaving the center. The result is that

many ‘first visitors’ had to answer ‘no’ on the question whether they had received

brochures. In the hospital in Galle leaflets with information for diabetics are available,

however, the patients are requested to make copies of the leaflets. The same leaflets as

in Galle were provided in Peradeniya hospital, but about three months before I arrived

in Peradeniya, a diabetes educator was installed in the hospital.

The aim was to use the same questionnaire in the three places of research. However,

the differences in availability of information necessitated minor modifications in the

original set of questions, as follows:

National Diabetes Center:

1. Have you visited the educational courses in the clinic?

2. Did you receive brochures?

3. Have you read the brochures given to you?

Page 58

Galle General Hospital:

1. Do you know about the leaflets for diabetic patients?

2. Did you make photocopies of the leaflets?

3. Have you read the leaflets?

Peradeniya General Hospital:

1. Have you visited the diabetes educator?

2. Did you receive leaflets with information on diabetes?

3. Have you read the leaflets?

Question 1 used at the NDC appeared to be irrelevant in testing the motivation of

patients, for two reasons. First, the medical officers ask the patients to go to the

teaching session and most patients comply this request. Second, the question appeared

to be ambiguous and many patients did not understand that this morning teaching

session was meant by educational course. Several patients did answer ‘no’ to this

question, while they were there, sitting and listening right before my eyes.

The diabetes educator in Peradeniya had been working for only a few months before

my arrival. Within the panel of patients in this hospital nobody had been referred to

the educator thus far, which makes the question 1 in Peradeniya irrelevant.

The answers to the questions 2 and 3 are comparable in the NDC and the Peradeniya

setting, whereas in Galle the patients have to put some effort in copying of the

leaflets. However, all the patients in Galle who knew about the leaflets (20 out of 32)

copied and read them. This makes the answers to the questions 2 and 3 comparable in

the three places, and they are presented in table 7.

All the patients in the NDC and in Galle that received (or copied) written information

have also read this. In Peradeniya on the contrary, all the patients have received

leaflets, however, five of them haven’t read them, for unknown reasons. Three of

them were Muslim housewives, over 50 years of age with primary education. The

other two were males, and also older than 50, with only primary education. One of

them was a Tamil laborer in a tea estate, whereas the other was a Sinhalese farmer.

Page 59

In the NDC 25 patients were interviewed that did not (yet) receive any leaflets with

information about diabetes. Seventeen of them came for the first time and might have

received the leaflets later that day. Four patients asserted to have read leaflets,

although they did not (yet) receive them. Maybe these patients have read leaflets that

they got somewhere else, because the visitors of the NDC go to other physicians for

the regular treatment of their diabetes. Ten patients in Galle didn’t know about the

leaflets, thought one of them states to have read them. Maybe this patient also had

leaflets from another source.

The patients were asked if they would travel to the NDC or the hospitals for education

only, in the questions:

National Diabetes Center:

• Would you come to the National Diabetes Center if diabetes education only

was given?

Galle and Peradeniya hospitals:

• If a patient education course was provided in the hospital/clinic, would you

visit this course?

26 26

100.0% 100.0%

4 21 25

16.0% 84.0% 100.0%

30 21 51

58.8% 41.2% 100.0%

19 19

100.0% 100.0%

1 9 10

10.0% 90.0% 100.0%

20 9 29

69.0% 31.0% 100.0%

17 5 22

77.3% 22.7% 100.0%

17 5 22

77.3% 22.7% 100.0%

yes

no

did receiveleaflets?

Total

yes

no

did receiveleaflets?

Total

yesdid receiveleaflets?

Total

placeNDC

Galle

Peradeniya

yes no

did read leaflets?

Total

Table 7. Overview of receiving and reading of leafl etsby patients.

Page 60

It is investigated whether people living closer to the hospital are more often

enthusiastic to visit a course than people living in more remote areas. In the next table

8 an overview of the willingness versus the distances from home to the hospital/NDC

is presented.

A low, but significant association is observed between home distance and readiness to

travel for a course (Cramer’s V= 0.259, Sign. 0.02). Also the willingness to come for

a course versus the traveling time and mode of transportation were investigated, and

here associations were even lower (data not shown).

Other sources of information

Other questions were included to explore whether the patients’ seek for information

outside the hospitals or the NDC. After using the questionnaire for a few days we

discovered that similar questions were asked in different parts in the questionnaire

(part 1 and part 4, see appendix 1). These questions, on searching on the Internet and

in bookshops and libraries, were formulated differently however. For example:

In part 1: Did you ever get books about diabetes from the library of bookshop?

In part 4: Did you ever look for books on diabetes in bookshops or public

libraries?

It was decided to leave these double questions as they were, and use it to test the

consistency of the respondents’ answers.

The Internet is not (yet) widely used by the patients in the panel. Only 22 respondents,

who have answered the English version of the questionnaire in the NDC, had access.

Two of them have actually visited diabetes related websites, and two others said they

did it only once. One of the latter answered ‘no’ when the question was asked for the

51 17 68

75.0% 25.0% 100.0%

13 14 27

48.1% 51.9% 100.0%

11 10 21

52.4% 47.6% 100.0%

75 41 116

64.7% 35.3% 100.0%

0-19 km

20-39 km

more than40 km

distancehomehospital

Total

yes no

would you come forcourse

Total

Table 8. Home distance and willingness to visit a c ourse.

Page 61

first time in the questionnaire. Another respondent said that his son, who is a medical

student, does the Internet surfing for him.

We have asked the patients whether they have looked for books; however, literature

on diabetes outside the medical circuit is hardly available (see page 45). Many

patients who have sought for books may have failed to find something, which

becomes clear from table 9.

About half of the panel (62) has ever looked for books, and 48 of them (77.4%) had

success and found something. One respondent gave inconsistent answers, and had

gotten a book without searching for it. The persons who gave ‘other answer’, said

they would do so in the future or mentioned other sources of information, like

newspapers or DASL newsletters.

Furthermore the patients were asked whether they had a radio or TV-set and whether

they would try to listen or watch programs on diabetes. The results are shown is table

10. The two patients who stated to possess neither radio nor television set were both

interviewed in Peradeniya.

Only 8.4% of the respondents wouldn’t try to listen or watch diabetes related

programs in the broadcasted media. The question is whether these persons are not

interested or whether they lack control over the radio or TV set. It is possible that, for

instance, husbands or elder family members determine what is viewed or heard.

48 14 62

77.4% 22.6% 100.0%

96.0% 20.0% 50.8%

1 52 1 54

1.9% 96.3% 1.9% 100.0%

2.0% 74.3% 50.0% 44.3%

1 4 1 6

16.7% 66.7% 16.7% 100.0%

2.0% 5.7% 50.0% 4.9%

50 70 2 122

41.0% 57.4% 1.6% 100.0%

100.0% 100.0% 100.0% 100.0%

yes

no

otheranswer

eversoughtbooks?

Total

yes noother

answer

ever got books?

Total

Table 9. Overview of respondents looking for and ge tting books.

Page 62

Shared characteristics in this small group of ten respondents were the low levels of

formal education and diabetic knowledge as well. The group consisted of males as

well as females, of all age groups and religions, which does not explain why they

don’t draw on broadcasted information. The ‘other answer’ was the statement of ‘not

necessarily’, which may indicate that this respondent wouldn’t stay at home for it.

The information seeking behavior within the panel of respondents is not very variable.

Most patients gave the same answers (with only few exceptions) on questions

concerning the oral and written information provided by the health-workers, and were

willing to use broadcasted information (ten exceptions).

More variety was observed when patients were asked if they would come to a clinic

for education only, and whether they have sought for books about their disease. In

contrast to the motivation the knowledge about diabetes was very variable, however,

and this will be discussed in the next section.

108 108

90.8% 89.3%

10 2 12

8.4% 100.0% 9.9%

1 1

.8% .8%

119 2 121

100.0% 100.0% 100.0%

yes

no

otheranswer

would youlisten/watch

Total

yes no

radio or tv

Total

Table 10. Readiness to watch/listen broadcasted dia beticprograms.

Page 63

Knowledge test results of the whole panel

The diabetic knowledge differed considerably in the panel of patients. Many of them

were well informed, whereas others had such poor knowledge that it must be almost

impossible to manage the disease on a daily basis. The ignorance was also observed in

patients I spoke outside the context of the NDC or hospital, and is illustrated by the

following examples: I spend a weekend with a family of which the parents (both in

their sixties) had diabetes. The father told me that their diabetes was very well

controlled, while smoking one cigarette after the other. The only physical exercise he

had was lifting his hand to his mouth. Looking over his shoulder I saw his grandson

pouring tea and adding spoonfuls of sugar for both of us. His wife controlled her

diabetes by wearing an incantation in a pendant on her necklace.

A well to do shopkeeper I spoke, told me that he had his own blood-glucose meter.

When I asked him how often he measured his blood-glucose, he said to do it only

once a month. When we discussed the frequency of measuring it became clear that

this patient for ten years did not realize that his blood-glucose levels might change

after the intake of food. Another person without diabetes asked me whether he could

contract the disease by having sex with a diabetic patient.

The knowledge of the patients was tested with 11 multiple-choice questions from the

Diabetes Knowledge Scale of Dunn (1984) supplemented with 2 questions from a

DVN patient course. The 13 questions with the possible answers are provided in

appendix 1 of this document. A short version, with the scores on the test of the whole

panel, is summarized below:

Question correct answers

1. The blood glucose level in uncontrolled diabetes is.. 88.8%

2. Which statement is true? 72.0%

3. What is the normal blood glucose range? 54.4%

4. Butter is mainly … 74.4%

5. Rice is mainly… 66.4%

6. Which complication is not associated with diabetes? 48.0%

7. ….urines constantly testing positive for sugar should.. 30.4%

8. When a diabetic on insulin becomes ill and unable to eat… 52.0%

9. If you feel the beginnings of a hypo, you should.. 77.6%

10. You can eat as much as you like of… 71.2%

11. A hypo is caused by… 32.8%

12. Why do we need insulin? 31.2%

13. What is HbA1c? 21.6%

Page 64

On the first question the score was best, with 89 % correct answers. This score could

have been higher, because in the English version the formulation of the question was

not clear. We started with the question: “In uncontrolled diabetes the blood-sugar is:”

A few respondents answered wrongfully ‘normal’, whereas all the patients with the

Sinhalese version gave the correct answer ‘increased’. Probably the patients missed

the prefix ‘un’ in uncontrolled, and we thought to solve the problem by underlining

the prefix ‘un’. When people still answered wrongfully we changed the question in:

“In diabetes that is not controlled (no treatment) the blood-sugar is:” and after this

change the question was answered correct by the rest of the English speaking patients.

Furthermore many patients gave correct answers on the questions 4, 5 and 10

concerning diet. Despite these relatively high scores it is remarkable that 25% of the

respondents are not aware that butter is mainly fat, and moreover 34% of them don’t

realize that their staple food rice consists mainly of carbohydrates. The lowest scores

are found on question 7, about sugar in the urine (30% correct), and question 13 about

the blood testing of HbA1c. Only 22% of the patients gave the right answer on this

question, which is even lower as 25% change of random ticking up.

The interrelationships between the questions in the knowledge test, and their correct

answering, are explored using Homals analysis. The questions 1 and 13 are excluded

from these analyses, because they were answered correctly and wrongly respectively,

by most of the respondents. A diagram with the category quantifications for the

remaining questions is presented in figure 4, with w for wrong- and c for correct

answers. (SPSS fails to include question ‘12 action of insulin’ in the legends; its

categories are the outermost ones on the second dimension). Eigen-values on the first

and second dimension are 0.3570 and 0.0966. Within this diagram a subdivision is

observed between the easy questions and the more demanding questions. The

categories of correct answers to questions on diets (4,5 and 10) are found close to the

horizontal axis, and are considered as trouble-free. Somewhat more difficult are

question 2, about finding the true statement about diabetes, question 3 about the

blood-glucose levels in healthy people and question 6 about possible complications of

diabetes. The correct answering of the questions on the cause of a hypo, sugar in the

urine and the action of insulin in the body (11, 7 and 12), indicate the comprehension

of the physiology of diabetes mellitus. The scores on these questions are relatively

low in the panel, as is indicated by the distances from the center of the diagram. Two

Page 65

questions, 8 and 9, do not fit wholly in the subdivision. The issues in these questions

are only relevant for patients on insulin, however many patients gave the correct

answers.

To investigate the relationships between specific diabetic knowledge and the

categories of other variables, the object scores of the diagram above were labeled

(data not shown). The labeling of objects (respondents) was subsequently done with

the variables age, sex, therapy (insulin versus non-insulin), type of diabetes and place

of research. Only in the labeling with ‘place of research’ a ‘non-random scattering’ of

categories was observed, with the patients of the NDC mainly on the right-hand

quadrants, the Galle patients on the lower left-side quadrant, and the Peradeniya

patients on the upper left-side quadrant. This indicates that most often the visitors of

the NDC scored the relatively difficult questions 7, 11 and 12. The knowledge of the

patients in the three places of research is discussed in the next section.

Figure 4. Category Quantifications

Dimension 1

1.0.50.0-.5-1.0-1.5

Dim

ensi

on 2

1.0

.8

.6

.4

.2

0.0

-.2

-.4

11 cause of hypo

10 eat as much

9 hypo what todo

8 ill on insulin

7 sugar in urine

6 complications

5 rice is..

4 butter is..

3 normal bg range

2 true?w

c

w

c

w c

w

cw

c

w

c

w c

w

c

w

c

w

c

w

c

Page 66

Knowledge in three places of research

Not anyone in the panel of respondents answered all of the 13 questions correct; the

highest score was 12 correct answers. Only one patient in Peradeniya succeeded in

answering all the questions wrong. In figure 5 the scores of the patients are explored

subdivided in the three places of research.

The patients who visited the NDC are much better informed about diabetes than those

consulting the hospitals, represented by higher bars on the right side of the diagram.

The patients in Galle take an intermediate position, with respect to their diabetic

knowledge, whereas the patients in Peradeniya have very poor knowledge about the

disease.

It is interesting to explore whether the higher knowledge of the patients visiting the

NDC is the result of the information given at this center. This group of patients is

subdivided in those who came for the first time and those who have visited the center

more often, and have had leaflets and individual information. The knowledge of the

two groups is given in table 11.

Figure 5. Diabetic knowledge in three places.

knowledge range

9-12 correct5-8 correct0-4 correct

Per

cent

70

60

50

40

30

20

10

0

place

NDC

Galle

Peradeniya

Page 67

The diabetic knowledge is somewhat higher when patients have visited the center

more often (Cramers’ V = 0.182). It must be kept in mind that most respondents had

just visited the morning teaching session before they answered the questions in the

knowledge test. The medical officers have told me that issues in the questionnaire are

indeed discussed in these sessions. Subjects as high blood glucose levels,

complications and diets are discussed each day. The contents of food products and

issues related to the use of insulin are discussed sometimes, depending on the patients

visiting the session. Even the poorly scored questions 13, on the action of insulin and

the blood test HbA1c are discussed on daily basis. These issues, however, may be

incomprehensible for people who never have learned about biology and chemistry.

The issue of sugar in the urine, for which only 30% of the patients had the solution, is

never discussed in the teaching sessions.

The knowledge of insulin dependent patients

Although the population under study were type 2 diabetic patients, the doctors at the

NDC advised me to include a few juvenile type 1 patients; to find out whether they

were better informed about insulin related facts. The daily injections require special

knowledge and skills to maintain proper blood-glucose levels and to avoid hypo’s. To

investigate this knowledge the small group of youngsters was extended with the

insulin users among the type 2 patients. The questions concerning insulin were taken

from the test, and the percentages of correct answers were compared in figure 6.

3 6 14 23

13.0% 26.1% 60.9% 100.0%

2 18 28 48

4.2% 37.5% 58.3% 100.0%

5 24 42 71

7.0% 33.8% 59.2% 100.0%

first visit

earliervisits

NDC

Total

0-4correct

5-8correct

9-12correct

knowledge range

Total

Table 11. The diabetic knowledge of patients in th e NDC.

Page 68

The differences in insulin related knowledge between the two groups is not dramatic.

The insulin users more often know what to do in case of illness (question 8), but the

knowledge about sugar in the urine is lower within this group. Exploration in the

small group of seven type 1 patients only, showed that they scored somewhat higher

on the questions 8 and 9 (data not shown); knowledge that is essential to avoid hypo’s

and diabetic coma.

Figure 6. Insulin related knowledge in two groups.

insulin usersnon-insulin

perc

enta

ge c

orre

ct a

nsw

ers

120

100

80

60

40

20

0

7 sugar in urine

8 ill on insulin

9 hypo what todo

11 cause of hypo

12 action of insuli

n

Page 69

10. Psycho-social features of the respondents

Degree of acceptance of the disease

After the diagnosis of a chronic disease most people will go through a process of

mourning. This process has five phases: denial, revolt, bargaining, depression with

hope and finally acceptance, and this process may take a few months up to two years.

To my pleasant surprise these phases were also mentioned in the DASL brochure ‘A

positive Approach to Diabetes’. In this brochure, with advises for coping emotionally

with the chronic disease, these phases are fully described to the Sri Lankan patients.

To explore the degree of acceptance of diabetes four questions were included in the

questionnaire (part 3). The first two questions were, more or less, meant to prepare the

patients for the more relevant questions:

3. Did you accept the fact that you are a patient for the rest of your life?

4. How do you feel now about having diabetes?

The question 3 was often answered with a simple yes or no. The answers to question 4

were very informative, but did not give a clue about the phases of acceptance

mentioned above. They gave impressions of the impact of the disease on daily life,

and how the patients deal with this. Moreover, only 29 patients had diabetes for less

than two years, the time generally needed to pass the five phases. Although the

answers gave an indication of the patients’ coping with the disease, rather than degree

of acceptance, the responses are categorized in four groups. The categories are based

on the answers to both question 3 (yes or no) and on to question 4 (open answer).

Examples of the first category are the answers to question 4 given by, respectively, an

almost blind patient in Galle and the type 1 patient mentioned earlier whose husband

divorced her:

“I am very depressed about the illness and think about suicide. Nobody to help with my

insulin and preparing my diet”.

“It has changed my normal life a lot. My husband has left me because of the illness, and I

have lost my baby due to the illness. I hate this”.

Both patients stated not to have accepted the disease, and they gave the impression

(not without reason) to be very depressed.

Other patients, who declared not to accept the disease, seemed more able to cope than

the persons above. Their answers are placed in the second category:

Page 70

“I like to be healthy as much as possible, by taking diet, taking drugs at proper time and

taking medical advise”.

“I got the disease due to my fate. Nobody can change the fate. I will try to control my

disease”.

Many patients who have accepted their diabetes express a strong awareness that they

are responsible for the control of their blood-glucose levels. There are patients that

have difficulties with their change in lifestyle, as indicated by the following

statements. These responses are grouped in the third category:

“I am unhappy, but I hope to control it”.

“Life is very uncomfortable because of change in lifestyle”.

“I am very sorry about my behavior and carelessness of the sweet foods”.

Finally there is a group of patients who have accepted the disease, and seem to live an

enjoyable life with it.

“I have got in line with it”.

“I am doing very well”.

“I can live a normal life if sufficient care is taken about food and medicine”.

The resulting categories are listed below. The respondents who failed to answer the

open question 4 are grouped in, respectively, category 2 and 4, based on their answer

to question 3.

1. No acceptance of disease, very unhappy

2. No acceptance of disease, but hopeful

3. Acceptance of disease, but worried

4. Acceptance and not worried.

A strong correlation between these emotional statuses of patients and the years of

having diabetes is not observed (Kendall’s τ = 0.120), as is shown in table 12.

6 9 1 16

20.7% 14.8% 3.7% 13.7%

8 15 8 31

27.6% 24.6% 29.6% 26.5%

3 13 3 19

10.3% 21.3% 11.1% 16.2%

12 24 15 51

41.4% 39.3% 55.6% 43.6%

29 61 27 117

100.0% 100.0% 100.0% 100.0%

no acceptance,very unhappy

no acceptance

acceptance butworried

acceptance

acceptanceof disease

Total

up to 2years

2 - 10years

morethan 10years

time since diagnosis

Total

Table 12. The 'acceptance' versus time since diagn osis.

Page 71

The answers to question 4 and the figures in table 12 illustrate painfully that the

emotional state or the attitude towards the disease is explored, rather than the degree

of acceptance. These problems became clear after a few days of interviewing and I

have discussed these with the junior medical officer at the NDC, who she is more

experienced in psychology than I am. We could not figure out how to adjust the

questions to obtain more relevant answers.

The locus of control

The patient’s ‘locus of control’ or notions about the responsibility over his sickness

and health, were explored by statements from the HLC scale, developed by Wallston

(1976). In this scale 11 statements are scored on a 6-point Likert scale, from strongly

disagree to strongly agree. We extended this scale with one statement, to include the

external locus “God” in the test.

The scale is scored in the ‘external locus of control’ direction, and scores on

statements that are ‘internally’ worded have to be reversed. The maximum score is 72

(12 times 6), and corresponds to a high ‘external locus of control’. The minimum

score is 12 (12 times 1) and is an indication of a high ‘internal locus of control’

(notion of own responsibility over health). The lowest score among the patients was

27 and highest score was 61. The scores are grouped and represented in figure 7.

Figure 7. 'Locus of control' division in the panel.

locus of control Mean: 41.2 SD: 7.98

57-6152-5647-5142-4637-4132-3627-31

Fre

quen

cy

30

20

10

0

Page 72

In his paper in 1976 Wallston distinguished his subjects in HLC internals and

externals, without mentioning the margins. In this study the internals and externals are

based on HLC-values below and above the median value of 41. Patients with values

of 27 up to 40 are considered ‘internals’, whereas those with values of 41 and higher

are the ‘externals’.

Wallston (1978) has developed multidimensional HLC scales to distinguish between

the external loci of control (doctors, sorcerers, God or fate). This multidimensional

scale consists of 24 statements however, and may have become very boring for the

respondents. For this reason we used the original 11 statements scale mentioned

above. It is interesting, however, to explore the dimensions or the relationships

between questions within this test, as scored by the Sri Lankan respondents. For this

purpose Princals analyses were performed. The scores on the HLC Likert scale were

summarized into the categories e (external, 5 and 6), n (neutral, 3 and 4) and i

(internal, 1 and 2). For the internal worded statements the scores were inversed first.

Because of the low numbers some categories are combined into in (internal and

neutral) and ne (neutral and external), and for the sake of completeness the 12

statements are given:

1. If I take care of myself, I can avoid illness.

2. Whenever I get sick it is because of something I’ve done or not done.

3. Good health is largely a matter of good fortune.

4. No matter what I do, if I am going to get sick I will get sick.

5. Most people do not realize the extent to which their illnesses are controlled by accidental

happenings.

6. I can only do what my doctor tells me to do.

7. There are so many strange diseases around that you can never know how or when you might

pick one up.

8. When I feel ill, I know it is because I have not been getting the proper exercise or eating right.

9. People who never get sick are just plain lucky.

10. People’s ill health results from their own carelessness.

11. I am directly responsible for my health.

12. Whatever happens to my health is God’s will.

In figure 8 a diagram with component loadings is presented. The Eigen-values are

0.2988 and 01637, respectively on the first and second dimension.

Page 73

The statements 4 and 12 appear to have similar loadings on the first and second

dimension. The locus of control in question 12 is God, whereas it is not defined in

question 4. The statements 8 and 10 have similar loadings on the first dimension, and

indicate the influence of bad behavior on health. Other statements that load on the first

dimension are 1, 2 and 11, and also deal with behavior, but healthy conduct. Although

the loadings differ considerably, the statements 3, 5, 7 and 9 are more or less related

to sickness as the result of bad luck. In statement 6 the doctor is held responsible for

good health. The Princal analyses were continued with a selection of the statements,

to explore the relationships between the dimensions and other variables in the panel of

patients. Statements 1 and 8 were taken for the behavioral dimension, 4 for the

undefined or God dimension and 6 for the doctor as locus of control. From the others

statement 9 was chosen, because the category quantification showed that this variable

fits best in the subdivision internal-external, as is shown in figure 9 (Eigen-values on

the first and second dimension are 0.3231 and 0.3109). The internal ends of the

ordinal scales are all on the right-hand side of the diagram.

The object (respondent) scores for this diagram were labeled subsequently with

categories of the variables age, sex, level of education and religion. Only in the

labeling with religion a particular patterning of object scores was seen (data not

Figure 8. Component Loadings

Dimension 1

.6.4.20.0-.2-.4-.6-.8

Dim

ensi

on 2

.4

.2

0.0

-.2

-.4

-.6

-.8

stat. 12

stat. 11

stat. 10

stat. 9

stat. 8

stat. 7

stat. 6

stat. 5

stat.4

stat. 3

stat. 2

stat. 1

Page 74

shown). The Muslims scored most often on the left-hand side of the diagram, and hold

more often an external locus of control.

Health value

The patients are expected to look for information on their disease when they value

their health very high. To explore this value in the panel of patients, ‘health’ was

combined with nine other human values from the list of Rokeach (1973). The

selection of these nine values was done in cooperation with the junior medical officer

at the NDC, with the aim to select items that are relevant in the Sri Lankan context.

The respondents were requested to sort these values in order of importance to them.

The most important value should be given number 1 and the least important item

number 10. Unfortunately this was not always clear in the Sinhalese version. Many

patients at the NDC, who answered the questionnaire themselves, marked more than

one item with number 1, and hence made the test-results useless. This resulted in a lot

of ‘non-responses’ in this group.

The values and the mean scores in the panel are listed hereafter (the lower the score,

the higher the item is valued):

Figure 9. Category Coordinates

Dimension 1

1.0.50.0-.5-1.0-1.5

Dim

ensi

on 2

2.0

1.5

1.0

.5

0.0

-.5

-1.0

stat. 9

stat. 8

stat. 6

stat. 1

stat.4

e

n

i

ne

ie

ni

ne

i

e

n

i

Page 75

Item mean value

Health 2.1

Freedom 4.7

Love and friendship 5.0

Comfortable life 5.1

Happiness and pleasure 5.2

Wisdom 5.6

World of beauty 6.2

Peace and security 6.7

Social recognition 7.3

Equality 7.9

Many patients ranked their health very high, and very often this value was marked

with number 1. The scores of some of the other human values are interesting. The

value ‘equality’ appeared to be of low importance for the respondents, as may be

anticipated in a Buddhist/Hindu society. However, the item ‘peace and security’ was

also scantily valued. This was a remarkable observation in a country that has been

caught up in a civil war for the last twenty years.

Schlenk and Hart (1984) classified their subjects as having high health values, in

cases that health was ranked 1 up to 4. Because of the high scores in this study, it was

decided to restrict this category to the scores 1 up to 3.

The patients in the hospitals were sick at the time of interviewing, whereas the visitors

of the NDC were interviewed during a periodical check up. It was investigated

whether hospitalization has influence on the valuing of health of the respondents, and

the results are presented in table 14.

All the hospitalized patients, except one, valued their health high, whereas in the NDC

only 70.8% of the patients treasured their health. The influence of being hospitalized

34 50 84

70.8% 98.0% 84.8%

14 1 15

29.2% 2.0% 15.2%

48 51 99

100.0% 100.0% 100.0%

high

low

healthvalue

Total

NDC hospital

hospital or NDC

Total

Table 14. Health value of patients in NDC and in ho spitals.

Page 76

on the valuing of health by patients appeared to be significant (χ2 = 14.1, exact sign.

=0.000).

Social support.

The supportive attitude of other people, such as family, friends and health-workers,

may have influence on the patients’ motivation to learn. To investigate this circle of

social support, questions were included on marital status, number of children, and

whether children still live in the parental household. These issues are already

discussed in the chapter on socio-demographic features of the respondents.

Furthermore we asked the respondents to check off in a table (appendix 1: part 3)

which groups were concerned in the questions, with the four questions.

We explained to the patients that in question 2 persons are meant who give help,

advice and moral support that they are contented about. It is understandable that

patients do not always appreciate the advice and comments of others, and therefore

question 3 and 4 are included. To explain question 3 I always used the example “those

people that start to nag about your diabetes when you eat something sweet”.

Many respondents conducted the checking off in the table very incoherently. They

stated to be helped by their spouses and/or children, but they didn’t indicate that these

people knew about their diabetes. Some respondents filled in just one group in a row,

whereas others gave the impression to have ticked off cells in the table at random.

Maybe the number of groups in the table was too high, and the respondents got bored,

or they did not wholly comprehend the questions. In general cells in the row of

question 3 were left open, whereas respondents tended to mark most cells in the row

of question 2. In this row the groups of acquaintances are listed, of whom the

respondents appreciate advice, and these groups will be the focus of the analysis

below.

Table 15 shows how often the categories of people, whose help is valued, are ticked

off in the table. In this table the young type 1 patients are excluded, because spouses,

children and colleagues are not applicable for them. The figures show that the health-

workers and spouses are most important in providing positive support in the

management of diabetes. Respectively, 61% and 56% of the respondents checks off

these groups. Peer diabetics and colleagues play a lesser role in social support of

diabetes, as indicated by percentages of 23 and 17, respectively.

Page 77

With the aim of classifying the patients in levels of perceived social support, the

‘checked off’ groups were summated for each patient, yielding scores from 0 up to 6.

The scores up to 3 are considered as ‘low amount social support’ and score above 4 as

‘high amount of social support. These categories are used in the multivariate analysis,

described in the next chapter.

66 56

56 48

20 17

41 35

27 23

72 61

spouse

children

colleagues

friends

otherdiabetics

healthworkers

yes percent

help and support

Table 15. Groups providing socialsupport.

Page 78

11. Multivariate analyses

A variety of indicators or variables for the motivation of the patients to learn about

diabetes are explored in this study, and discussed in chapter 9. A few of these

variables hardly showed any variation within the panel, for example the questioning

of the health-workers during consultation. Two indicators were observed that showed

variation, namely ‘the looking for books in bookshops or libraries’ and ‘the

willingness to come to a clinic for education only’. Another factor that is considered

as an indication for motivation is the actual knowledge about the disease. This

knowledge, in particular, showed a lot of variation within the panel, and it is

interesting to find out which factors determine this awareness.

The aim of this study is to explore whether the dependent variables motivation and

knowledge are determined by socio-demographic, psychosocial and enabling factors.

One possibility to explore these associations is the performance of subsequent cross-

tabulations. This results into pages full of tables however, and may fail to reveal the

relationships between the different independent variables. To circumvent these

problems the inter-relationships between variables were explored by multivariate

analyses. Because this study contains mostly nominal variables HOMALS analyses

were applied. The seven diabetes type 1 patients are excluded from these analyses,

because this group already forms a separate category with respect to age, marital

status and therapy.

The HOMALS methods were initiated with 18 factors, which the previous chapters

have shown to be variable. Some categories were grouped together to reduce their

numbers, and to get frequencies of at least five in each category. For example: the

categories unmarried and widowed are grouped together, and the number of

professional groups is reduced by combining small categories with flanking ones. The

factors/variables used in the analyses are:

Dependent variables: Categories

book Did you ever look for books..? y yes

n no

cour Would you come for course? y yes

n no

Page 79

know diabetic knowledge <5c 0-4 answers correct

5-8c 5-8 answers correct

>8c 9-12 answers correct

Independent variables:

sex m male

f female

age 30-39

40-49

50-59

>60

ethn ethnic background Sin Sinhalese

Tam Tamil

Mus Muslim

reli religion Bud Buddhism

Hin Hinduism

Isl Islam

Chr Christianity

vrel …very religious person? v very religious

nv somewhat/not religious

mar marital status un/wi unmarried and widowed

ma married

educ level of education pri primary education

o/l O-level education

un A-Level and university

prof professional groups ma senior profs/managers

p&t professionals/technicians

c&s clercks/sales/servicemen

a&e agricultural/elementary

nj (no job) unemployed

plac place of research ndc NDC Colombo

gal Galle

per Peradeniya

Page 80

time time since diagnosis <2y less than 2 years

2-10y 2 up to 10 years

>10y more than 10 years

ther therapy di diet only

or oral medication

in insulin injections

cop coping with the disease (acceptance) n/d no acceptance, depressed

n/h no acceptance, hopeful

a/w acceptance, but worried

a/h acceptance, happy

hlc health locus of control int internal hlc

ex external hlc

hval valuing of health hi high

lo low

sosu amount of social support lo low

hi high

The set of variables are initially imported in the HOMALS analysis, and a plot with

discrimination measures (or loadings) is presented in figure 10. Eigen-values on the

first and the second dimension are 0.2384 and 0.1544, respectively. The

discrimination value of a variable is indicative for its importance in distinguishing the

respondents. Based on the values in figure 10 decisions were made on the exclusion of

variables. The variables sosu, vrel, sex, mar, time and age have minor loading and

are excluded from further analyses. Cour and book are not very discriminating,

however they are the dependent variables that are explored in this study. The variables

ethn and reli, ethnicity and religion greatly overlap, however, a considerable number

of the Sinhalese and two Tamils are Christians. Thus ethn is excluded in further

analysis because reli is more informative.

Page 81

In figure 11 a plot with discrimination measures of the reduced group of variables is

given, with Eigen-values on the first and second dimension of 0.3456 and 0.2053

respectively. It is however very difficult to see a pattern in this diagram.

Figure 10. Discrimination Measures, 18 variables.

Dimension 1

.7.6.5.4.3.2.10.0-.1

Dim

ensi

on 2

.7

.6

.5

.4

.3

.2

.1

0.0

vrel

timether

sosusex

reli

prof

plac

mar

know

hval

hlc

ethn

educ

cour

cop

bookage

Figure 11. Discrimination Measures, 11 variables.

Dimension 1

.7.6.5.4.3.2.10.0

Dim

ensi

on 2

.6

.5

.4

.3

.2

.1

0.0

therreli

prof

plac

know

hval

hlc

educ

cour

cop

book

Page 82

Figure 12 shows the category quantifications of the 11 variables. In the left-hand

upper quadrant a cluster is visible of ndc visitors, Christians: Chr, the more

prestigious professional groups of managers: ma and professionals/technicians: p/t. In

the cluster also the categories of university education: un and high knowledge of

diabetes: >8co are present. The internal locus of control is also seen on this side.

Another cluster is present in the lower quadrants of the diagram, with the categories of

Buddhists Bud, O-Level education: o/l, an intermediate knowledge of diabetes: 5-8 co

and the intermediate ranked professional groups of clercks/sales/services: c/s. In the

vicinity of this cluster the place of research Galle is found.

In the right-hand upper quadrant we find the minority religion of Hinduism: Hin, low

levels of formal education and diabetic knowledge: pri and >5co, Peradeniya and the

agricultural/elementary professions and no job at all: a/e and nj. More to the center of

the Islamic religion: Isl is found. Labeling the object scores with the variable ethnicity

shows that the Tamils are indeed present in the upper right-side of the diagram,

whereas the Muslims are present in three clusters (data not shown). Labeling the

Figure 12. Category Quantifications

Dimension 1

1.51.0.50.0-.5-1.0

Dim

ensi

on 2

1.5

1.0

.5

0.0

-.5

-1.0

-1.5

ther

reli

prof

plac

know

hval

hlc

educ

cour

cop

book

in

or

di

Hin

Isl

Chr

Bud

nja&e

c&s

p&t

ma

per

gal

ndc

>8co

5-8co

<5colo

hi ex

intun

o/l

prin

ya/h

a/w

n/h

n/d

n

y

Page 83

objects with categories of the variables sex, age and vrel didn’t give any specific

patterning.

Some categories of variables are more difficult to subdivide into the clusters. The

variables book and cour that are supposed to be indicative for motivation are

contradictive in the diagram. The confirmative y category of the one is close to the no:

n category of the other. The use of insulin in is situated close to the Hin category,

because three out of six of the Hindu respondents happen to be on insulin therapy.

The two other therapies, oral: or and diet: di are, as a consequence, found in the

vicinity of the other two clusters. It was already shown that patients interviewed in the

hospitals often have a higher health value than the ambulant visitors of the NDC. This

is confirmed in the diagram, where lo is found on a small distance from the ndc

cluster, and hi in the center of gravity of the other two clusters. It is difficult to

interpret the division of categories of the variable coping with the disease, however,

the not accepted/depressed category n/d is found in the cluster of low levels of

education and diabetic knowledge.

The diagram in figure 12 shows evidently the interrelationships between some of the

variables explored in this study. Conclusions on these interrelationships are made in

the next chapter.

Page 84

12. Conclusions

Diabetes patient education

The orientation on Diabetes in Sri Lanka, as subject of the fieldwork project abroad

started in the summer of 2000. The most urgent question at that time was whether I

would be able to find enough diabetic patients during the three months that I was

expected to spend in the country. The statistics about diabetes that were available on

the Internet were ironically reassuring on this point, but alarming for the population of

Sri Lanka. Due to changing lifestyles the prevalence of diabetes type 2 is increasing

very fast. The current estimate is 1 million patients on a population of almost 19

million people.

The increase of diabetes, with the risks of severe long-term complications, has not

gone unnoticed. In 1984 a group of medical and laypersons have established the

Diabetes Association of Sri Lanka (DASL). In 1995 the association opened the

National Diabetes Center to offer clinical services and education to diabetic patients.

The oral and written information provided by the NDC is of excellent standards.

Although the services of the NDC are available for all the diabetics in Sri Lanka, less

than 10.000 patients per year are able to visit the center.

The diabetic patients on the island consult the doctors in public and private hospitals

for the treatment of their disease, provided that they have already been diagnosed (due

to scarcity of symptoms the disease may stay unnoticed for many years). In the clinics

of the General Hospitals in Galle and Peradeniya the patients receive Western based

medical treatment and medication. Information is provided orally during the consult,

and through leaflets. The education of the patients in these hospitals needs

improvement, which is recognized by the doctors. Recently the DASL has started

branches in Galle and Kandy, headed by the respective senior doctors of both

hospitals, and they are establishing educational services in the areas of Galle and

Kandy (Discussions are under way for starting another branch in Jaffna).

Written information on the aspects of diabetes was hard to find outside the medical

circuit. This means that the burden of teaching the diabetic patients is entirely on the

health workers. Hopefully in the years to come, more and more patients will find their

way to the centers established by the DASL.

Page 85

Motivation and knowledge

Motivation is defined as ‘the drive of a person for directing energy to a given task’, in

this case searching for information about one’s chronic disease. The information

seeking behavior of Sri Lankan diabetics was investigated by a set of questions.

Unfortunately, on most of these questions the interviewed patients gave the same

answers. Only two questions, indicative for motivation to learn, provided different

answers within the panel. The questions were concerned with ‘looking for books

about diabetes’ and ‘willingness to visit a course’. Homals multivariate analyses were

performed to explore the relationships between these two ‘motivational’ variables and

other psychosocial and socio-demographic variables. Associations were not observed,

although it was shown that people living closer to the hospital were more often

agreeable to come for a course.

The failure to find associations between motivation, and the psychosocial and socio-

demographic variables can be explained in two ways. Firstly, the psychosocial factors

that are summarized by Maldonato, Assal and Schlenk are of no significance in the Sri

Lankan context, and neither are the explored socio-demographic factors. Another,

more plausible explanation is that the questions above are not valid indicators for the

motivation to learn about diabetes. For people with low levels of education and

elementary jobs, for example, it may be very uncommon to read books. In

combination with an external locus of control it may never have crossed their minds

to search for a book, because they rely on advises of their physicians.

The aim of the information seeking is gathering knowledge about diabetes, in order to

maintain proper blood-glucose levels and have a satisfying clinical condition. The

knowledge about diabetes appeared to vary considerably within the panel. Homals

analyses revealed that higher diabetic knowledge is associated with higher levels of

formal education and with more prestigious jobs. The highest scores are found among

the visitors of the NDC, and often they are Christians. Intermediate positions

concerning diabetic knowledge and formal education are found among Buddhist, and

many of them are interviewed in Galle. Lower levels of knowledge and education are

found among the minority groups of Muslims and Hindus (Tamils), who also have the

less prestigious jobs or no job at all (also women had lower levels of education and

were often without paid jobs).

Page 86

The relationship of the psychosocial factors and diabetic knowledge was not always

obvious. An internal locus of control is more often observed among the well-educated

visitors of the NDC. Whether the ‘valuing of health’ by the patients plays a role is

hard to determine, because the exploration is biased by the fact that many poorly

educated respondents were hospitalized at the time of interviewing. The people that

did not value their health were found among the ambulant patients of the NDC.

Evidently people tend to care more about their health when they are sick and

hospitalized. The acceptance of the disease was hard to determine, but it was clear

that the patients with low levels of knowledge are more often very unhappy and

depressed about having diabetes. The exploration of circle social support has failed to

give satisfying answers.

It was not possible to pinpoint enabling factors that have an influence on the

knowledge and motivation of the patients. Money should not play a central role

because the healthcare and patient education are made affordable for everyone. Time

and distance were irrelevant because only patients were reached who had taken the

time and effort to come to the NDC, or were obliged to stay in the hospitals because

of an illness. All the respondents, except two, had a radio or television set to receive

broadcasted information.

Flaws and recommendations

The brightest ideas about conducting research always tend to come up while making

the report, when it is too late to change the questioning. The questions on ‘acceptance

of disease’ and ‘social support’ did not really investigate the factors that I was

interested in. It would have been wiser if I had consulted someone who is experienced

in psychology to help me with this part of the questionnaire.

The validity of questions to test motivation could have been enhanced with extensions

such as: “why” or “why not”. Moreover it is the question whether the poorly educated

patients are aware of the importance of proper knowledge about the disease. Only if

they are conscious of this it is useful to investigate their motivation.

The subject of diabetes patient for the fieldwork in Sri Lanka was born out of personal

interest. Visiting the three institutes and learning about diabetes healthcare has been a

great experience, which I have enjoyed very much. Hopefully this document may

somehow contribute to the improvement of diabetes education on the island. Based on

the results of this study I can recommend the diabetes educators in Sri Lanka to

Page 87

concentrate more on the patients with lower levels of formal education, in the

teaching programs. The others with more years of schooling seem to know how and

where to get the information about their chronic disease. Furthermore, it appeared to

be very easy to test the actual diabetic knowledge of patients (the multiple choice

knowledge test was always checked off totally by the respondents in this study). A

well-designed test may reveal which aspects of the disease are difficult to comprehend

for the patients, and further attention may be paid to these aspects in teaching sessions

or in brochures.

Page 88

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Krall, L.P. 1995 The history of diabetes lay associations. New Trends in Patient Education. pp.

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Maldonato, A., D. Bloise, M. Ceci et al. 1995 Diabetes mellitus: lessons from patient education. New Trends in Patient

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Wijesuriya M.A. 1997 Prevalence of Diabetes in Sri Lanka. Int. J. Diab. Dev. Countries (17)1-4. Wlodkowski R. J. 1999 Enhancing Adult Motivation to learn. San Francisco: Jossey-Bass

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Appendix 1.

Questionnaire

(Some of the headers were deleted in the copies for the patients)

Part 1: About the information that patients received in hospital/clinic.

1. How long ago have you been diagnosed with diabetes mellitus?

2. Are you on insulin or on oral medication (or just a diet).

3. How long have you been treated in this hospital/clinic?

4. Do doctors and nurses tell you facts about the disease?

5. Do you understand everything that they tell you?

6. If not, do you feel free to ask for an explanation?

7. Do you feel free to ask other questions (related to diabetes) in the clinic?

8. NDC: Have you visited the educational courses in the clinic?

Galle: Do you know about the leaflets for diabetic patients?

Peradeniya: Have you visited the diabetes educator?

9. NDC: Did you receive brochures?

Galle: Did you make photocopies of the leaflets?

Peradeniya: Did you receive leaflets with information on diabetes?

10. Have you read the brochures/leaflets?

11. Did you ever get books about diabetes from the library or bookshop?

12. Did you surf the Internet for information on diabetes?

Page 92

Part 2: Multiple-choice questions to explore the diabetes related knowledge

Question 1. In diabetes that is not controlled (no treatment) the blood-sugar is:

A. Normal

B. Increased

C. Decreased

D. I don’t know

Question 2. Which statement of the following is true?

A. It does not matter if your diabetes is not fully controlled, as long as you do not

have a coma.

B. It is best to show some sugar in the urine in order to avoid hypo’s.

C. Poor control of diabetes could result in a greater change of complications later.

D. I don’t know

Question 3. The normal range for blood-glucose is:

A. 72-144 mg% (4-8 mmol/l)

B. 126-270 mg% (7-15 mmol/l)

C. 36-180 mg% (2-10 mmol/l)

D. I don’t know

Question 4. Butter is mainly:

A. Protein

B. Carbohydrate

C. Fat

D. Mineral and vitamin

E. I don’t know

Question 5. Rice is mainly:

A. Protein

B. Carbohydrate

C. Fat

D. Mineral and vitamin

E. I don’t know

Question 6. Which of the following possible complications is usually not associated

with diabetes?

A. Changes in vision

B. Changes in the kidney

C. Changes in the lung

Page 93

D. I don’t know

Question 7. A diabetic on insulin who finds his urines are constantly testing positive

for sugar with Dipsticks should probably:

A. Stop taking insulin

B. Decrease his insulin

C. Increase his insulin

D. I don’t know

Question 8. When a diabetic on insulin becomes ill and unable to eat the prescribed

diet:

A. He should immediately stop taking his insulin.

B. He should call a doctor in order to adjust the insulin intake.

C. He should use diabetic tablets instead of insulin.

D. I don’t know.

Question 9. If you feel the beginnings of a hypo reaction, you should:

A. Immediately take some insulin or tablets.

B. Immediately lay down and rest.

C. Immediately eat or drink something sweet.

D. I don’t know

Question 10. You can eat as much as you like of which one of the following foods:

A. Fruit

B. Green leaf vegetables

C. Meat

D. Honey

E. I don’t know

Question 11. A hypo is caused by:

A. Too much insulin

B. Too little insulin

C. Too little exercise

D. I don’t know

Question 12. Why do we need insulin?

A. For the increase of the blood-glucose level.

B. For the uptake of sugar from the blood by cells in the muscles.

C. For the stimulation of the pancreas.

D. For the storage of glycogen in the liver

Page 94

I don’t know

Question 13. What is HbA1c?

A. A measure for the average blood-glucose level over the past 8-12 weeks.

B. A measure for the average blood-glucose level over the past 2-4 weeks.

C. The blood-glucose level before breakfast.

D. I don’t know.

Part 3. Exploration of the psychosocial factors among the respondents.

Degree of acceptance of disease

1. Can you remember how you felt when you first heard that you had diabetes?

(For example: did you feel angry, sad, ashamed, fear, panic?)

2. Have these feelings changed in time?

3. How do you feel now about having diabetes?

4. Did you accept the fact that you are a patient for the rest of your life?

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Health Locus of Control

How strong do you agree with the following statements, on a scale from 1 (strong

disagreement) to 6 (strong agreement).

1. If I take care of myself, I can avoid illness.

1 2 3 4 5 6

2. Whenever I get sick it is because of something I’ve done or not done.

1 2 3 4 5 6

3. Good health is largely a matter of good fortune.

1 2 3 4 5 6

4. No matter what I do, if I am going to get sick I will get sick.

1 2 3 4 5 6

5. Most people do not realize the extent to which their illnesses are controlled by

accidental happenings.

1 2 3 4 5 6

6. I can only do what my doctor tells me to do.

1 2 3 4 5 6

7. There are so many strange diseases around that you can never know how or

when you might pick one up.

1 2 3 4 5 6

8. When I feel ill, I know it is because I have not been getting the proper exercise

or eating right.

1 2 3 4 5 6

9. People who never get sick are just plain lucky.

1 2 3 4 5 6

10. People’s ill health results from their own carelessness.

1 2 3 4 5 6

11. I am directly responsible for my health.

1 2 3 4 5 6

12. Whatever happens to my health is God’s will.

1 2 3 4 5 6

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Health value

Please number these values from 1 to 10 in order of importance to you (the most

important is number 1)

A comfortable life (a prosperous life)

A world at beauty (beauty of nature and the arts)

Equality (brotherhood, equal opportunity for all)

A world at peace, security (free of war and conflict)

Freedom (independence, free choice)

Happiness and pleasure (contentedness)

Love and friendship (close companionship)

Social recognition (respect, admiration)

Wisdom (a mature understanding of life)

Health (feeling of physical well being)

Social support

(The scheme below was printed in landscape and in larger format in the copies for the

patients).

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Part 4. Enabling factors

Distance

1. How many kilometers do you live from the hospital/clinic?

2. How did you come (for example: public transportation, car, bicycle, walking)?

3. How much time did it take to come here?

4. NDC: Would you come to the National Diabetes Center if diabetes education

only was given?

Galle and Peradeniya: If a patient education course was provided in the

hospital/clinic, would you visit this course?

Supplies

1. Do you have a radio and/or television set?

2. If you knew that something about diabetes is broadcasted, would you try to

watch/listen?

3. Do you have access to the Internet?

4. Did you ever visit diabetes related websites?

5. Did you ever look for books on diabetes in bookshops or public libraries?

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Part 5. Socio-demographic factors

The interviewers noted sex of the respondents.

1. What is your age?

2. What is your marital status?

O unmarried O married O widowed O divorced O other….

3. How many children do you have?

4. How many children live at you home?

5. What is your level of education?

O primary education O O-level O A-level O University

O other, please specify….

6. What is your profession?

7. What is your ethnic background?

8. O Sinhalese O Tamil O Muslim O Burgher O Other, please

specify…..

9. What is your religion?

10. Would you consider yourself as a very religious person?

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Appendix 2

Consensus on the

Aetiology of Type 2 Diabetes Mellitus Preamble

A specially convened meeting under the banner of Diabetes In Asia was held in Colombo, Sri Lanka on 6-7 th July 2002 for the express purpose of arriving at an aetiological consensus and the development of a primary prevention strategy . This meeting was hosted by the Diabetes Association of Sri Lanka and attended by over 350 senior opinion leaders representing 30 countries worldwide. The panel of International experts presented the latest evidence on the different aetiological factors, which was extensively discussed by all the delegates present. At the conclusion of these deliberations a Consensus was reached on the Aetiology and Primary Prevention , which was submitted for ratification by the International Diabetes Federation (IDF) and the World Health Organisation (W HO). The faculty comprised the following experts: - Chief Guest: - Prof Sir George Alberti – President - IDF Guests of Honour:- Prof Pierre Lefèbvre – President Elect IDF Prof Rhys Williams - WHO Moderators:- Prof Pierre Lefèbvre – President Elect of the IDF Prof Samad Shera – Hon. Vice president – IDF Chairpersons:- Prof John Turtle Prof Clive Cockram

Prof George Chrousos

Prof Massimo Massi Benedetti Prof Jean Claude Mbanya

Prof Hajera Mahtab Prof David Phillips Dr Linda Siminerio Faculty:- Prof Graham Hitman Prof Philippe Froguel Prof Charles Nicholas Hales Prof David Phillips Prof C S Yajnik Prof Martin Silink

Prof Kaichi Kida

Prof A Ramachandran Prof George Chrousos Dr Constantine Tsigos

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Consensus Document

A consensus was reached on the Aetiology and Prevention of Type 2 Diabetes Mellitus at the Diabetes In Asia 2002 meeting held on 6-7th July 2002 in Colombo Sri Lanka. Proposition

• Current Increase in the prevalence of Type 2 Diabetes Mellitus worldwide – accepted with level “A” evidence

• Increased incidence of Type 2 Diabetes Mellitus in Childhood and Adolescence – Accepted with level “A” evidence

Genetics Genetics is recognized as playing an important role in the aetiopathogenesis of Diabetes . Monogenic forms have been identified. Susceptibility genes have also been identified in the common forms of Type 2 Diabetes Mellitus. Genetic studies have contributed to the discovery of new pathogenic mechanisms. Accepted as a significant Aetiological factor- Level “A ” evidence. Further studies need to be pursued. Genetic counseling not recommended at present. Foetal Origins

Epidemiological studies have reported a higher incidence of Type 2 Diabetes Mellitus in subjects with a low birth weight. The hypothesis that nutrition of the mother can profoundly affect the metabolic outcome of the offspring has been confirmed by elegant mechanistic animal studies. Low birth weight accepted as a significant aetiological factor – Level “A” evidence.

• Poor nourishment of the foetus increases risk of metabolic syndrome and Type 2 Diabetes Mellitus and postnatal over-nutrition may aggravate the syndrome.

• Animal studies are confirmatory. Further clinical research in human beings recommended.

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Life Style There is a global epidemic of obesity affecting all ages. Obesity is associated with Insulin Resistance. There is a strong association between Obesity, Diabetes, Impaired Glucose Tolerance (IGT) and Cardiovascular Disease (C VD). Physical inactivity is independently associated with increased Insulin Resistance. Lifestyle changes in subjects with IGT decreases progression to diabetes. Accepted as a significant Aetiological factor level “A” evidence. Stress Compelling animal evidence and Mechanistic studies suggest a relation between stress and Insulin Resistance with predisposition to Type 2 Diabetes Mellitus. Accepted as an Aetiological factor Level “B” evidence.

• Further evaluation recommended Primary Prevention All of the above are likely to underline the urgent need for the Primary Prevention of Type 2 Diabetes Mellitus and facilitate the introduction of programmes, which must be tailored to local circumstances in order to be effective. These should include lifestyle changes in all those at risk. Concerted actions, including by governments, should be directed t o the following:

• Increasing Awareness • Promotion of Education at all levels • Multi-sectoral Advocacy

Level “A” evidence – Indicates full acceptance Level “B” evidence – Partial acceptance with more evidence needed.

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Appendix 3

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