Emotions and Diabetes Self-Management. in Diabetic Patients at Jogjakarta: An Exploratory Study. Nida Ul Hasanat* Faculty of Psychology

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1 Emotions and Diabetes Self-Management in Diabetic Patients at Jogjakarta: An Exploratory Study Nida Ul Hasanat* Faculty of Psychology Gadjah Mada University Indonesia This exploratory study aimed to investigate the emotions emerged when diabetic patients must manage their illness. Focus Group Discussion was conducted with 20 adult outpatients with non-insulindependent diabetes mellitus (NIDDM) from Wirosaban General Hospital, Panti Rapih Hospital, and Bethesda Hospital, at Jogyakarta and interview was conducted with two medical doctors. The result of the study showed that patients experience the feeling of fear, anxious, sad, shock, and wary when the physician initially diagnosed them as diabetics. Respondents reported that they experience the feeling of shock, fear, insecure, and get bored when they have to be compliance with a routine medical treatment, specific dietary, regular exercise and controlling their blood sugar at anytime. However, some of the respondents who aware of their potential for getting diabetes reported that they accepted their illness, being calm, and have less wariness. They, who were optimistic in getting well, believe that the medication will help them to feel better. They adhered to the medication, felt less wary and enthusiastic in joining the Diabetes Patients Club. These results suggested that emotions related to diabetes self-management. Implications of these results for well-being patients are discussed. Keywords: diabetes, emotions, self-management, well-being *a lecturer, psychologist at Faculty of Psychology of Gadjah Mada University, Jogjakarta, Indonesia correspondence concerning this article should be addressed to nida@ugm.ac.id 1

2 INTRODUCTION Diabetes Mellitus (DM) or diabetes is a disease caused by impaired carbohydrate, protein, and fat metabolism that results from insufficient secretion of insulin or from insulin resistance (Taylor, 2006). Diabetes is divided into two categories: (a) Insulin-dependent diabetes mellitus (IDDM) or type 1 diabetes and (b) non-insulin-dependent diabetes mellitus (NIDDM) or type 2 diabetes. Type 1 diabetes is caused by a combination of genetic and immunological processes that damage auto beta cells in the pancreas that produce insulin, the hormone that regulates the use of primary and storage of glucose. This insulin deficiency will lead to accumulation of glucose in the blood, or is called hyperglycemia. This type of diabetes can occur at any age but can be diagnosed at a younger age. In type 2 diabetes, the genetic component is relatively strong. Type 2 diabetes is caused by a combination of beta cell dysfunction and insulin resistance. Nearly 80% of patients with type 2 diabetes are obese, which is a major contributor to the emergence of insulin resistance (Cox & Gonder-Frederick, 1992). According to McCarry and Zimmet (see Tjokroprawiro, 2004) there are at least million people with diabetes in the world with 1,2-22% prevalence for adults in 2000 increased 1.5 times (to million) and year 2010 increased two times (to million). In America 6% of the population suffering from diabetes and diabetes is the 7th cause of death. In Indonesia, people with diabetes are 5-7 percent of the population, or 14 million people ( Even a survey conducted by WHO, Indonesia was ranked the 4 th with the largest number of diabetics in the 2

3 world after India, China and the United States. According to the Ministry of Health data, the number of diabetes hospitalizations and outpatient hospital ranked first of all endocrine diseases ( Option = news & task = viewarticle & sid = 1183 & Itemid = 2). The average age of patients between years old. Diabetes patients in one year lost an average of 8.3 days compared with those without diabetes, who lost 1.7 days (American Diabetes Association / ADA, in Feifer & Tansman, 1999). Although Indonesia has not counted on the indirect losses due to diabetes, such as loss of productivity, but estimated the indirect losses are much higher than the cost of treatment itself. Based on that facts, the issue of management of diabetes is very important. Four components in the management of diabetes are a medical treatment, diet, exercise and monitoring blood glucose levels (Cox & Gonder-Frederick, 1992). Aurbach et al. (see Taylor, 2006) states that active self-management is the key to control diabetes successfuly. Delamater et al. (2001) mention that psychosocial factors can influence treatment adherence and glycemic control. According to Fisher, Delamater, Bertelson and Kirkley (1982), one of the reasons for the emergence of great attention from psychology to diabetes is the fact that diabetes is a chronic disease, which has psychological and behavioural aspects. Recent literature see diabetes as a self regulatory process because patients need to regulate metabolic processes, such as monitoring and 'adjust' blood glucose levels (Gonder-Frederick & Cox; Wing, et al., in Cox & Gonder- Frederick, 1992). Patients should follow the doctor's suggestions. That is not easy for them when they are faced with their own psychological condition. Patients should follow suggestion in the management of diabetes, while also aware that the 3

4 complications due to diabetes is nearly impossible to avoid. Dalewitz, et al., and Rubin and Peyrot (see Keers, et al., 2004) mentioned that many patients have difficulty to perform self-management, affect in poor glucose control or psychosocial problems. For example, Kirkley (in Fisher, et al., 1982) found that lifestyle changes can lead to negative emotions, and conflicts in patients. Kirkley further stated that the emergence of the negative emotions of anger, guilt, anxiety, and grief can cause the patient to consume foods more, or even eat foods that are not recommended. This means that emotions affect self-management. This condition will seriously affects the treatment process as well and may inhibits the activities of daily life which in turn negatively affect self-esteem, and quality of life. II. PURPOSE OF THE STUDY The study was to explore the emotions emerged when diabetic patients should manage their illness. III. METHOD This study used qualitative methods. In contrast to quantitative methods that set the variables before the data collection carried out, qualitative methods specifically oriented to exploration, discovery and inductive logic. Focus Group Discussion was conducted as the data collection. The discussion took place at the hospital where each subject as outpatient. 4

5 Subjects Subjects were 20 diabetic outpatients and two medical doctors: 10 subjects from Wirosaban General Hospital (8 women, 2 men); 3 subjects from Bethesda Hospital (2 women, 1 man); 7 patients from Panti Rapih Hospital (3 women, 4 men). RESULTS AND DISCUSSION The findings showed that when the subjects diagnosed as diabetic initially, the subjects reaction diverse. Some subjects showed fear, shock, and sadness. They did not believe that they have diabetes, difficult to accept the fact, surprised, or sad. One of the subjects was fear since the subject was pregnant (third child). She imagined that she would give birth a big enough baby. She was shock and made her could not speak. Another subject did not believe that she was a diabetic, because she was an athlete. Similarly, another subject felt shock, because she had been careful enough for eating. Her mother was diabetic. These negative emotions arise, after patients were diagnosed a chronic disease (in this case: diabetes). They will have a state of crisis, characterized by imbalance of physical, social, or psychological (Moos, in Taylor, 2006). However, the data also showed that among the subjects did not experience negative emotions. Some subjects were calm, not nervous, no shock, not felt bad, able to accept and realized that her/his diabetes, and thought that many other people had the same fate. The subject did not experience a crisis situation first, but could adapt to the conditions of illness immediately. In other words, subjects were able to develop coping (Taylor, 2006). Most of the subjects who did not have negative emotions after being diagnosed 5

6 came from families who had diabetes. They realized that someday they would get the disease, too. McDonald et.al (see Misra & Lager, 2008), reported that in caring for diabetic patients, nurses said that acceptance was critical to diabetes management. In this research, for being "cool", researcher saw that this reaction was similar to the defense mechanism of denial. Taylor (2006) said that denial is one of emotional response, as a defense mechanism that made the patient to avoid the implications of the disease. Patients would behave as if the disease was not severe disease. This could be seen from the subject statement "cool is the best, exercise is important for me to do". One subject who was cool seemed to have a beneficial effect, because the subject would be able to reduce or avoid of negative emotions. The subject stated: "I do not want to think about my diabetes, I busied myself with positive activities that produce something". From this statement, it means that the "cool" was a coping for illness. Coping was a process to manage the demands from outside and from within the individual, which is considered as a burden or exceed the capacity of that person (Taylor, 2006). Besides emotions mentioned above, based on interviews with doctors, doctors said that in medical practice, doctors showed that patients felt anxious, concerned the disease very much, but some were "indifferent", "ndableg (Javanese language; or stubborn). Both the patient's condition would make the patients want to break their diets and eat whatever they want. This finding was consistent with the findings of Kirkley (in Fisher, et al., 1982) that people with diabetes appeared negative emotions, such as the emotion of anger, guilt, anxiety, and sadness, which can lead them to consume the food not recommended 6

7 (amounts or types of food) by nutrician. However, doctors also found that patients awareness of the disease were too late, when diabetes complications occured. The doctor observed that for patients who were aware of the disease, would have a high compliance. Conversely, for those who did not know or ignored the disease, the adherence to diabetes management was poor. As mentioned earlier, the four components of diabetes management are the medical treatment, diet, exercise, and monitoring of blood glucose levels (Cox & Gonder-Frederick, 1992). Various reactions of the subjects suggested that the diabetes self-management was not easy. One subject mentioned that she was irritable. The other subjects reported that they were uncomfortable, they thought their life would depend on the medicine.this long-term treatment made subject bored and tired. But not all subjects had the same experience. Other subjects were calm and obedient in realized that the medicine was helpful. The results of this study also showed that some subjects taking medicine, did not feel bored, and control the blood sugar regularly. They tried to motivate by themselves, because of complications due to diabetes. One subject motivates herself by remembering that herlife was for herchildren and grandchildren. Diet also affected negative emotions. One subject said that at first time she was scared when she should diet, but the fear was reduced gradually. The result of this study showed that diet was a component of diabetes management that was difficult to manage. Subject knew about the principles of 3 J ( Jenis : type, jadwal : schedule, jumlah : amaount) in the diet, but it was difficult to do. Subjects said that they were difficult to control themselves to not get extra snack and eat the foods that should be avoided. In addition, they have difficulties to 7

8 arrange a meal. In general, the subject knew and realized about diet issues, but it was difficult to control themselves or they have low self-control. Self-control is one of the keywords associated with the diet in diabetes management. Peyrot, McMurry, and Krueger (in Taylor, 2006) said that self-control skills would lead to better control of blood sugar. That data were consistent with Dalewitz, et al., Rubin and Pyrot (Keers, et al., 2004) which mentioned that many patients have difficulties to do selfmanagement. In this study, even doctor said that some patients felt frustrated, because eventhough they tried to manage, but the blood sugar levels remained high. In addition, many subjects said that the exercise should be done routinely made them bored. There was one subject that relied on medication to manage the disease, rather than exercise. The study also showed that in general subjects were helped by the activities carried out by PERSADIA (Diabetes Patients Club), such as exercise, gathering, and seminars. They were enthusiastic to join these activities and were happy to be among their friends. This indicated that there was a social support. Social support needed in helping patients to manage disease. Research showed that social support will be able to patients to recover from an illness immediately (Taylor,2006). V. IMPLICATION The important findings from this research were that patients experience the feeling of fear, anxious, sad, shock, and wary when the physician initially diagnosed them as diabetics. Respondents reported that they experience the 8

9 feeling of shock, fear, insecure, and get bored when they have to be compliance with a routine medical treatment, specific dietary, regular exercise and control their blood sugar at anytime. However, some of the respondents who realized of their potential for getting diabetes reported that they accepted their illness, being calm, and have less wariness. They, who were optimistic in getting well, believe that the medication will help them to feel better. They adhere to the medication, felt less wary and enthusiastic in joining the Diabetes Patients Club. Eventhough this study did not focus in well-being issue, we knew these results suggested that emotions may influence self-management. Positive emotions can lead better self-management, and negative emotions can lead poor selfmanagement. Diabetic patients who feel burdened by negative emotions can also have limited work productivity, social life, family relations, and leisure interests (Mayou et.al., see Misra & Lager, 2008) or have a lower quality of life. Quality of life is a multidimensional construct incorporating an individual s subjective perception of well-being, satisfaction, and happiness (Rubin, see Misra & Lager, 2008). REFERENCES Cox, D.J., & Gonder-Frederick, L. (1992). Major development in behavioral diabetes research. Journal of Consulting and Clinical Psychology, Vol. 60, No. 4, Delamater, A.M., Jacobson, A.M., Anderson, B., Cox, D., Fisher, L., Lustman, P., Rubin, & Wysocki, T. (2001). Psychosocial therapies in diabetes: Report of psychosocial therapies working group. Diabetes Care,Vol. 24, No. 7,

10 Feifer, C., & Tansman, M. (1999). Promoting psychology in diabetes primary care. Professional Psychology: Research and Practice, Vol. 30, No. 1, Fisher, E.B., Delamater, A.M., Bertelson, A.D., & Kirkley, B.G. (1982). Psychological factors in diabetes and its treatment. Journal of Consulting and Clinical Psychology, Vol. 50, No. 6, Keers, J.C., Links, T.P., Bouma, J., Gans, R.O.B., ter Maaten,J.C., Wolffenbuttel, B.H.R., Sluiter, W.J., & Sanderman, R. (2004). Do diabetelogists recognise self-management problems in their patients? Diabetes Research and Clinical Practice, 66, Misra, R., & Lager, J Predictors of quality of life among adults with type 2 diabetes mellitus. Journal of Diabetes and Its Complications, 22, Taylor, S.E. (2006). Health psychology. New York:McGraw-Hill,Inc. Tjokroprawiro, A. (2004). Hidup sehat dan bahagia bersama diabetes. Jakarta: PT Gramedia Pustaka Utama. emid=2 retrieved May 22, Retrieved May 13,

handouts for women 1. Self-test for depression symptoms in pregnancy and postpartum Edinburgh postnatal depression scale (epds) 2

handouts for women 1. Self-test for depression symptoms in pregnancy and postpartum Edinburgh postnatal depression scale (epds) 2 2. The Cognitive-Behaviour Therapy model of depression 4 3. Goal setting