3.3. Diabetes self-care

Various terms have been used to describe patients´ own practices concerning diabetes treatment. Adherence to diabetes self-care regimens has been defined as the level to which the patient daily follows the diabetes self-care regimens established co-operatively by the patient and health care professionals (Hentinen 1988). Self-care can be either strict adherence to prescribed regimens or active self-care (de Weerdt et al. 1990). Active self-care refers to self-monitoring, dietary adjustments, insulin dosage for daily purposes and regular exercise. The term ´diabetes self-management´ emphasizes the responsibility and role of the patient him/herself in managing the diabetes. The terms ´compliance´ and ´adherence´ should be distinguished, because compliance means only strict observance of instructions, while adherence refers to more flexible self-care and control of situations. Adherence is a more suitable term than compliance to describe diabetes care (McNabb 1997), and it is therefore used in this study.

3.3.1. Diabetes self-care practices

Diabetic patients adhere best to the most vital self-care practices: insulin injections (Schlenk & Hart 1984, Peveler et al. 1993) and glucose testing (Schlenk & Hart 1984, Glasgow et al. 1987). It has been shown that 92% of patients never miss an injection of insulin, only 7% of subjects totally ignore the glucose testing, and 70% of all prescribed glucose tests are performed (Glasgow et al. 1987). Among Finnish insulin-treated patients, 84% of adults and 72% of adolescents show high compliance with insulin treatment (Hentinen & Kyngäs 1992, Toljamo 1999).

Thirty-five percent of adult insulin-treated patients show good adherence to exercise, but only 23% to diet instructions (Toljamo 1999). Among adolescent diabetic patients, 62% show high compliance with the co-operation with the nursing staff, while only 11% show similar compliance with the diet and 28% with the home monitoring regimens (Hentinen & Kyngäs 1992). The dietary and exercise regimens (Glasgow et al. 1987, Glasgow et al. 1997, Ruggiero et al. 1997) and foot care and physical exercise (Schlenk & Hart 1984) are adhered to most poorly. Sixty-eight percent of diabetic patients report difficulties with the control of smoking, 58% with weight regulation, 54% with exercise and 49% with diet, but only 10% with insulin injections (Hanestad & Albrektsen 1991). Among an adult insulin-treated patient population, 35% find it difficult to quit smoking, while 88% have difficulties concerning the illness and 84% concerning parties. Eighty-eight percent have problems with the diet instructions at least sometimes, and 78% with assessing the influence of exercise on blood glucose. (Toljamo 1999)

In Finland, IDDM patients have been shown to visit their diabetes care unit approximately four times a year (Kangas 1993), which makes it possible to monitor metabolic control and to interfere with the progression of complications. In previous studies, no-show visits have been reported to vary between 4% to 40% of all appointments (Griffin 1998). Infrequent attenders have more complications and poorer metabolic balance than those who keep their appointments. The factors predisposing to non-attendance include the patients´ health beliefs and attitudes, the organization of the clinic, the costs of attendance and the degree of patient participation in consultation. (Griffin 1998).

There are various reasons for poor diabetes self-care. Diabetes self-care is very complex, requires life-long commitment, and requires modification of one´s personal life-style. These aspects have been shown to decrease adherence to self-care regimens. (Becker 1976, Haynes 1976). It has been suggested that self-management behaviors are affected by numerous variables, such as financial resources, emotional support, complexity of regimen, disruption of lifestyle, education in self-management skills, cues to action, perceived barriers, locus of control and motivation. Motivation is determined by, for example, values, life experiences, psychological features and knowledge. Perceived benefits, ability, severity of disease, susceptibility to complications and barriers modify the motivation of patients. (Wooldridge et al. 1992). Lack of knowledge may affect adherence (Coates & Boore 1998), and the amount of knowledge appears to relate to self-care only among patients with sufficient motivation (Pennings-van der Eerden 1990). Concerning adherence to the prescribed diet, knowledge is needed, but social demands and personal preferences have been found to be play a major role, and simplification of the diet regimens has been recommended (Lo 1998). The most frequent barriers to dietary adherence are encountered at home, then come barriers at shopping for food and away from home (Glasgow et al. 1997). Poor self-care may be a completely rational decision based on the patient´s belief that good self-care is not necessary for good health (Roberson 1992), or the regimens can be regarded as non-reliable (Thorne 1990). There are many reasons for poor diabetes self-care: stress, a lack of time, being away from home, a lack of a convenient place to exercise, a lack of family support (Glasgow & Eakin 1998), smoking and living alone (Toljamo 1999). Fear of hypoglycemia has been reported as a major reason for poor metabolic control, because the patient prefers to have a slightly too high than low blood glucose (Mollema et al. 1998). It can be concluded that diabetes adherence should be viewed from the physical, psychological, social and environmental perspectives. Subjective motivation can be considered important for good diabetes self-care. While psychological features can affect motivation, it is suggested that health behavior models could be useful for analysing health behavior.

The circumstances for maintaining good diabetes self-care are good in Finland, where diabetic patients´ health care is well organized. There are specific diabetes teams and diabetes nurses, and the care of diabetes is the responsibility of special clinics, especially at the onset of the disease (Suomen Diabetesliitto 1995). National instructions have been published concerning the goals and methods of the care of IDDM patients in Finland (Suomen Diabetesliitto 1995). Still, it can be proposed that the patient education would be even more efficient and satisfactory for both diabetic patients and health care professionals if the psychological features characterizing health behavior could be better considered.

3.3.2. Diabetes health behavior and diabetes status

Fairly complex daily self-care is needed to keep the level of blood glucose close to normoglycemia. The insulin regimens should be physiologically based, with multiple daily insulin injections. The individual glycemic responses to food intake and exercise affect insulin dosage. Blood glucose measurements should be made at least three to four times per day by the patient, to determine the adjustments needed in insulin dosage. Differences in insulin absorption, insulin sensitivity, exercise, stress, food absorption, hormonal changes caused by puberty, menstrual cycle and pregnancy as well as illnesses and travelling cause variability in blood glucose levels. (American Diabetes Association 1998a,b). The goals of diabetes nutrition recommendations include the maintenance of near-normal blood glucose levels, achievement of optimal serum lipid levels, provision of an appropriate calorie intake and improvement of overall health (American Diabetes Association 1998c). Diabetic patients should have foot care assessments made regularly. Further, diabetic patients should not smoke (Ilanne-Parikka & Himanen 1999, Rönnemaa 1999), because smoking is a major cardiovascular risk factor (Mühlhauser 1990, Rana & Botha 1990) and may also impair nephropathy (Suomen Diabetesliitto 1995). Regular exercise is a crucial part of diabetes self-care, because exercise may prevent macrovascular diseases by improving cardiovascular fitness and the lipoprotein profile and by reducing blood pressure (American Diabetes Association 1997). To prevent diabetic complications, it is important to keep blood pressure and blood lipids at a normal level (Rönnemaa 1999). Apart from all these self-care practices, systematic monitoring by diabetes health care professionals is crucial for the maintenance of good metabolic control and avoidance of complications.

The Diabetes Control and Complications Trial Research Group (1993) has highlighted the finding that optimal blood glucose control helps to delay and prevent the complications of diabetes. Poor self-care causing poor long-term metabolic control may lead to the development of diabetic complications, which include retinopathy, nephropathy and neuropathy, as microvascular, and atherosclerotic changes as macrovascular complications. Good self-care practices (Hentinen & Kyngäs 1992, Toljamo 1999) and good adherence to the recommendations (Kravitz et al. 1993, Daviss et al. 1995) have been found to associate with good HbA1c levels (= glycosylated haemoglobin). The adherence to the dietary and exercise regimens (Burroughs et al. 1993), the extent to which the diet is followed, the reported attention to insulin dosage, the number of daily glucose tests (Schafer et al. 1983), and practical self-management skills, i.e. self-adjustment of insulin (Day et al. 1996), appear to be predictors of metabolic control. Those infrequently attending the monitorings have poorer metabolic control than regular attenders (Jacobson et al. 1991). But according to other studies, good self-care does not always guarantee a good metabolic balance (Glasgow 1987, Glasgow 1991, Johnson et al. 1992). In addition to regimen adherence, stress, individual metabolic factors and the appropriateness of the regimens should also be considered (Glasgow et al. 1987). All in all, the patient´s self-care practices are indeed a very crucial part of maintaining a good diabetes status. They are especially significant because there are good possibilities to enhance them.