Diabetes Patient Education In Sri Lanka

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 Page 2

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

Page 3

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 Page 4

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

Page 5

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.

Page 6

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 Page 7

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 sociodemographic 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.

Page 8

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 stoneage 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 Page 9

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 Page 10

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

Page 11

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.

Page 12

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. Page 13

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

Page 14

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 Page 15

(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 noncommunicable 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.

Page 16

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 17

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 monosugars in the gut.

Page 18

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 19

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).

Page 20

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).

Page 21

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 doctorpatient 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.

Page 22

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 welltrained 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.

Page 23

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.

Page 24

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 Page 25

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 18item 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. Page 26

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).

Page 27

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.

Page 28

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 29

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 Page 30

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 groupsessions, 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.

Page 31

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 Page 32

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.

Page 33

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 Page 34

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 welleducated, 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 35

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). Page 36

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 37

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 38

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 39

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 40

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 41

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 42

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 43

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 44

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 45

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 46

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): Table 1. Sex of respondents in three places of research. sex place

male 49 69.0% 17 53.1% 13 59.1% 79 63.2%

NDC Galle Peradeniya

Total

female 22 31.0% 15 46.9% 9 40.9% 46 36.8%

Total 71 100.0% 32 100.0% 22 100.0% 125 100.0%

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 Page 47

the age division by sex is represented, whereas figure 1b gives an overview of the ages of respondents in the three places of research. figure 1a. Age and sex distribution. 50

40

30

20

sex Percent

10 male female

0 30-39

40-49

50-59

60-69

70-79

age category

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.

Figure 1b. Age division in three places. 70

60

50

40

30

place 20

Percent

NDC 10

Galle

0

Peradeniya 30-39

40-49

50-59

60-69

70-79

age category

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. Page 48

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 49

Ramadan is very unhealthy with respect to diabetes (“All the Muslims in the fort have diabetes”, is what my landlady in Galle told me). Table 2. Ethnic background and religion of the respondents.

religion

Buddhist

Hindu

Muslim

Christian

Total

ethnic background Sinhalese Tamil Muslim 84 100.0% 83.2% 6 100.0% 75.0% 12 100.0% 100.0% 17 2 89.5% 10.5% 16.8% 25.0% 101 8 12 83.5% 6.6% 9.9% 100.0% 100.0% 100.0%

Total 84 100.0% 69.4% 6 100.0% 5.0% 12 100.0% 9.9% 19 100.0% 15.7% 121 100.0% 100.0%

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 Page 50

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. Table 3. Marital status and number of children within the panel of respondents.

none marital status

unmarried married

1-2 children

3 100.0% 3 2.8%

46 43.4% 3 37.5% 49 41.9%

widowed Total

6 5.1%

Number of children 3-4 5-6 children children

31 29.2% 2 25.0% 33 28.2%

11 10.4% 1 12.5% 12 10.3%

more than 6

2 1.9% 1 12.5% 3 2.6%

unknown number

13 12.3% 1 12.5% 14 12.0%

Total 3 100.0% 106 100.0% 8 100.0% 117 100.0%

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 610), A-level (grade 11-12), university and other, please specify. Only six persons at

Figure 2. Level of education versus place. 70 60

Percentage of respondents

50 40 30

place 20

NDC

10

Galle Peradeniya

0 primairy ed

O-level

A-level

university

level of education

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 Page 51

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 52

Figure 3. Occupational groups and sex.

number of respondents

40

30

20

sex 10 male 0

female

pl em un

er

ed if oy nt de ni /u

l ra

k or w

tu ul ic

ry ta en

r ag

e ic

an

t ia oc

/m

s as s/ an

v er /s

d lle

em el

i sk

s

s le sa

k er cl

s al ci ffi

s al on si

ci ni ch te

es of pr

o or ni se

occupational groups

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

1.2 %

14.5 %

Professionals

4.7 %

26.1 %

Technicians & associate prof.

5.0 %

10.1 %

Clerks

4.2 %

11.6 %

Sales & service workers

12.2 %

20.3 %

Skilled agricult. & fishery workers

26.0 %

7.2 %

Craft & related workers

16.2 %

-

Plant & machine operators

5.8 %

-

Elementary & unidentified

23 + 1.8 %

10.1 %

Page 53

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. Table 5. The time since diagnosis versus bloodglucose reducing therapy

time since diagnosis

up to 5 years 5 - 10 years more than 10 years

Total

only diet 12 24.5% 2 5.7% 1 3.1% 15 12.9%

therapy oral drugs 34 69.4% 26 74.3% 22 68.8% 82 70.7%

insulin 3 6.1% 7 20.0% 9 28.1% 19 16.4%

Total 49 100.0% 35 100.0% 32 100.0% 116 100.0%

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. Page 54

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 55

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 multiplechoice 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. Table 6. Answers to questions about communication with physicians.

1.doctors tell? yes no other answer

117

% 99.2%

1

.8%

2.do you understand? 115 6

% 95.0% 5.0%

3.ask for explanation? 108 2

% 97.3% 1.8%

1

.9%

4.other questions? 118 2

% 98.3% 1.7%

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 Page 56

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 57

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 58

Table 7. Overview of receiving and reading of leafletsby patients.

place NDC

did receive leaflets?

did read leaflets? yes no 26 100.0% 4 21 16.0% 84.0% 30 21 58.8% 41.2% 19 100.0% 1 9 10.0% 90.0% 20 9 69.0% 31.0% 17 5 77.3% 22.7% 17 5 77.3% 22.7%

yes no

Total Galle

did receive leaflets?

yes no

Total Peradeniya

did receive leaflets?

yes

Total

Total 26 100.0% 25 100.0% 51 100.0% 19 100.0% 10 100.0% 29 100.0% 22 100.0% 22 100.0%

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?

Page 59

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. Table 8. Home distance and willingness to visit a course.

distance home hospital

would you come for course yes no 51 17 75.0% 25.0% 13 14 48.1% 51.9% 11 10 52.4% 47.6% 75 41 64.7% 35.3%

0-19 km 20-39 km more than 40 km

Total

Total 68 100.0% 27 100.0% 21 100.0% 116 100.0%

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 Page 60

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.

Table 9. Overview of respondents looking for and getting books. ever got books? yes ever sought books?

yes

no

other answer Total

48 77.4% 96.0% 1 1.9% 2.0% 1 16.7% 2.0% 50 41.0% 100.0%

no 14 22.6% 20.0% 52 96.3% 74.3% 4 66.7% 5.7% 70 57.4% 100.0%

other answer

1 1.9% 50.0% 1 16.7% 50.0% 2 1.6% 100.0%

Total 62 100.0% 50.8% 54 100.0% 44.3% 6 100.0% 4.9% 122 100.0% 100.0%

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. Page 61

Table 10. Readiness to watch/listen broadcasted diabetic programs.

would you listen/watch

yes no other answer

Total

radio or tv yes no 108 90.8% 10 2 8.4% 100.0% 1 .8% 119 2 100.0% 100.0%

Total 108 89.3% 12 9.9% 1 .8% 121 100.0%

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.

Page 62

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 63

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 64

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.

11 cause of hypo

Figure 4. Category Quantifications 10 eat as much 9 hypo what todo 8 ill on insulin 1.0

c

.8

w

6 complications

c

.6 w

w .4

Dimension 2

7 sugar in urine c

5 rice is..

w w

.2 w 0.0 -.2

w

-.4 -1.5

c

w

-1.0

ww w -.5

4 butter is..

c c cc c c c

3 normal bg range 2 true?

0.0

.5

1.0

Dimension 1

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.

Page 65

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. Figure 5. Diabetic knowledge in three places. 70

60

50

40

30

place 20

Percent

NDC 10

Galle

0

Peradeniya 0-4 correct

5-8 correct

9-12 correct

knowledge range

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.

Page 66

Table 11. The diabetic knowledge of patients in the NDC. knowledge range 5-8 9-12 correct correct 3 6 14 13.0% 26.1% 60.9% 2 18 28 4.2% 37.5% 58.3% 5 24 42 7.0% 33.8% 59.2%

0-4 correct NDC

first visit earlier visits

Total

Total 23 100.0% 48 100.0% 71 100.0%

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.

Page 67

Figure 6. Insulin related knowledge in two groups. 120

100

percentage correct answers

80

60

7 sugar in urine 8 ill on insulin

40 9 hypo what todo 11 cause of hypo

20

12 action of insuli 0

n non-insulin

insulin users

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.

Page 68

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 69

“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. Table 12. The 'acceptance' versus time since diagnosis. time since diagnosis up to 2 years acceptance of disease

no acceptance, very unhappy no acceptance acceptance but worried acceptance

Total

6 20.7% 8 27.6% 3 10.3% 12 41.4% 29 100.0%

Page 70

2 - 10 years 9 14.8% 15 24.6% 13 21.3% 24 39.3% 61 100.0%

more than 10 years 1 3.7% 8 29.6% 3 11.1% 15 55.6% 27 100.0%

Total 16 13.7% 31 26.5% 19 16.2% 51 43.6% 117 100.0%

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. 30

20

Frequency

10

0 27-31

32-36

locus of control

37-41

42-46

47-51

Mean: 41.2 SD: 7.98

Page 71

52-56

57-61

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 72

Figure 8. Component Loadings .4 stat. 1 .2

stat.stat. 11 2 stat. 5

0.0 stat. 10stat. 8

-.2 stat. 7

stat. 3

Dimension 2

-.4 stat. 12 stat.4

stat. 6

-.6 stat. 9

-.8 -.8

-.6

-.4

-.2

0.0

.2

.4

.6

Dimension 1

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 Page 73

Figure 9. Category Coordinates 2.0 ne 1.5

1.0 ne ni i

.5

e

n

stat. 9

n

Dimension 2

0.0

stat. 8

i e

-.5

i

stat. 6

i

e stat. 1

-1.0

stat.4

-1.5

-1.0

-.5

0.0

.5

1.0

Dimension 1

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):

Page 74

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. Table 14. Health value of patients in NDC and in hospitals.

health value

high low

Total

hospital or NDC NDC hospital 34 50 70.8% 98.0% 14 1 29.2% 2.0% 48 51 100.0% 100.0%

Total 84 84.8% 15 15.2% 99 100.0%

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 Page 75

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 healthworkers 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 76

Table 15. Groups providing social support.

spouse children colleagues friends other diabetics healthworkers

help and support yes percent 66 56 56 48 20 17 41 35 27

23

72

61

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.

Page 77

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 crosstabulations. 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

y

yes

n

no

cour

Would you come for course?

Page 78

know diabetic knowledge

<5c

0-4 answers correct

5-8c

5-8 answers correct

>8c

9-12 answers correct

m

male

f

female

Independent variables: sex

age

30-39 40-49 50-59 >60

ethn

reli

vrel

mar

ethnic background

religion

…very religious person?

marital status

plac

Sinhalese

Tam

Tamil

Mus

Muslim

Bud

Buddhism

Hin

Hinduism

Isl

Islam

Chr

Christianity

v

very religious

nv

somewhat/not religious

un/wi unmarried and widowed

educ level of education

prof

Sin

professional groups

place of research

Page 79

ma

married

pri

primary education

o/l

O-level education

un

A-Level and university

ma

senior profs/managers

p&t

professionals/technicians

c&s

clercks/sales/servicemen

a&e

agricultural/elementary

nj

(no job) unemployed

ndc

NDC Colombo

gal

Galle

per

Peradeniya

time

time since diagnosis

<2y

less than 2 years

2-10y 2 up to 10 years >10y more than 10 years ther

cop

hlc

hval

sosu

therapy

coping with the disease (acceptance)

health locus of control

valuing of health

amount of social support

di

diet only

or

oral medication

in

insulin injections

n/d

no acceptance, depressed

n/h

no acceptance, hopeful

a/w

acceptance, but worried

a/h

acceptance, happy

int

internal hlc

ex

external hlc

hi

high

lo

low

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 80

Figure 10. Discrimination Measures, 18 variables. .7 reli .6

.5

ethn

.4 plac

.3

know

Dimension 2

hval .2

cop

time

ther age cour sosu book vrel sex mar

.1

prof

educ

hlc

0.0 -.1

0.0

.1

.2

.3

.4

.5

.6

.7

Dimension 1

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 11. Discrimination Measures, 11 variables. .6 know .5

.4

plac

cop

.3

book relither

Dimension 2

.2

educ

prof

cour

.1

hval hlc

0.0 0.0

.1

.2

.3

.4

Dimension 1

Page 81

.5

.6

.7

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

Figure 12. Category Quantifications 1.5

ther Hin a/w

1.0

.5

0.0

prof

Chr lo >8co n p&t un ndc int di ma

<5co per pri

n n/d

Isl

a/hor Bud

nj ex

hi y

a&e

hval hlc educ

5-8co

cour

gal

-1.0

plac know

y c&s n/h o/l

-.5

Dimension 2

reli

in

cop book

-1.5 -1.0

-.5

0.0

.5

1.0

1.5

Dimension 1 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

Page 82

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 83

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 84

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 sociodemographic 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 85

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 86

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 87

Bibliography Assal, J.Ph. and S. Lion 1983 A report of 6 workshops conducted by the DESG, in: Assal J. Ph., M. Berger, N. Gay et al (eds) Diabetes education; how to improve Patient Education, Amsterdam: Elsevier. Assal, J.Ph., S. Jacquemet and Y. Morel 1997 The added value of therapy in diabetes: the education of patients for selfmanagement of their disease. Metabolism 46(12 Suppl 1): 61-4. Bonnet C., R. Gagnayre and J.F. d’Ivernois 1998 Learning difficulties of diabetic patients: a survey of educators. Patient Education and Counseling 35:139-47. Chang A.A.P.T., K. de Abrew and D.J.S. Fernando 1997 An audit of structure, process and outcome of care of the diabetic clinic, National Hospital of Sri Lanka. Ceylon Medical Journal 42:133-36. Chang A.A.P.T., D.J.S. Fernando, K. de Abrew and M.H.R. Sheriff 1998 Knowledge about diabetes among final year students, non-specialist hospital doctors and general practitioners. Ceylon Medical Journal 43: 51-52. Day J.L. 1983 Diabetes patient education: problems we encounter, in: Assal J. Ph., M. Berger, N. Gay et al (eds) Diabetes Education; How to improve Patient Education? Amsterdam: Elsevier 1995 Why should patients do what we ask them to do? in: New Trends in Patient Education. pp. 113-19. Amsterdam: Elsevier. Devendra T. 1996 Sri Lanka; The emerald Island. New Delhi: Lustre press Fernando D. 1995 Preventing diabetes Mellitus; the epidemiological basis. Ceylon Medical Journal 40:136-8. Foster G.M. 1983 Introduction to ethnomedicine, in: Bannerman R.H., J. Burton and Ch’en Wen-Chien (eds) Traditional Medicine and Healthcare Coverage. pp 17-24, Geneva: WHO. Gebhardt W.A. 1990 Health Behaviour Goal Model; Towards a theoretical Framework for Health Behaviour Change. Leiden (dissertation). Krall, L.P. 1995 The history of diabetes lay associations. New Trends in Patient Education. pp. 285-91. Amsterdam: Elsevier.

Page 88

Maldonato, A., D. Bloise, M. Ceci et al. 1995 Diabetes mellitus: lessons from patient education. New Trends in Patient Education. pp. 57-66. Amsterdam: Elsevier. Mühlhauser I. and M. Berger 1993 Diabetes education and insulin therapy: when will they ever learn? Journal of Internal Medicine 233:321-6. Mulgirigama A. and U. Illangasekera 2000 Study of the quality of care at a diabetic clinic in Sri Lanka. J R Soc Health 120(3): 164-9. Napalkov N. 1995 The role of the WHO in promoting patient education with emphasis on chronic diseases, New Trends in Patient Education. pp 5-7 Amsterdam: Elsevier. Rokeach M. 1973 The Nature of human Values. New York: The Free Press. Schut, H. 1990 Gezondheidsvoorlichting bij Diabetes mellitus. Rotterdam (dissertation). Schlenk E.A. and L.K. Hart 1984 Relationship between health locus of control, health value, and social support and compliance of persons with diabetes mellitus. Diabetes Care 7: 566-74. Speek V. 1998 Childhood Blindness in Sri Lanka. Leiden University (essay). Termeer S. 2000 Sri Lanka, een idyllische façade, Onze Wereld 12/1: 18-26. Wallston B.S., K.A. Wallston, G.D. Kaplan and S.A. Maides 1976 Development and validation of the Health Locus of Control (HLC) scale. Journal of Consulting and Clinical Psychology 44: 580-85. Wallston K.A., B.S. Wallston and R. deVellis 1978 Development of the Multidimensional Health Locus of Control (MHLC) scales. Health Education Monographs 6: 160-70. Wallston K.A., V.L. Malcarne, L. Flores et al. 1999 Does God determine your health? The God Locus of Control scale. Cognitive Therapy and Research 23: 131-142. Wasser-Heininger, K. and V. Jörgens 1983 The role of the diabetes teaching nurse in a hospital. in: Assal J. Ph., M. Berger, N. Gay et al (eds) Diabetes education: how to improve Patient Education. Amsterdam: Elsevier.

Page 89

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 Wolffers I.N. 1987 Changing Traditions in Healthcare, Sri Lanka. (dissertation).

Leiden University

World Health Organization 1999 Definition, Diagnosis and Classification of Diabetes Mellitus and its Complications. Geneva: WHO.

Page 90

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 91

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 92

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 93

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?

Page 94

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

Page 95

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).

Page 96

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?

Page 97

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

specify….. 9. What is your religion? 10. Would you consider yourself as a very religious person?

Page 98

O Other, please

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 6-7th 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 (WHO). 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

Page 99

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.

Page 100

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 (CVD). 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 to 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.

Page 101

Appendix 3

Page 102

Page 103