**1. Introduction**

118 Type 1 Diabetes – Complications, Pathogenesis, and Alternative Treatments

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The definition of adolescence is a bit controversial but OMS (1965) establishes adolescence between 10 and 19 years old. The beginning of adolescence starts with the appearance of the first biological changes of puberty. According to Erikson's theory of psychosocial development (Erikson, 1968), the central task of adolescence is the development of autonomy, identity and self integration (Barros, 2003). In fact, identity formation, in adolescence, requires a reorganization of capacities, desires, needs and interests in the adolescent, as well as a quest for more independence towards parents. Nevertheless, the difficulties, even in the well succeeded resolution of the psychosocial tasks, may result in "identity confusion" (Erikson, 1968). In adolescents with diabetes, the disease can be an additional stressor functioning as another factor that requires acceptation and self integration. Diabetes exposes adolescents to potentially unpleasant experiences (having to explain others about the disease, medical exams, etc.) that can limit or prevent normal development and life experiences in adolescence (Close et al., 1986). On the other hand, physiological and hormonal changes that take place in adolescence may increase insulin resistance contributing to a weak control of diabetes (Duarte, 2002). In short, adolescence is a developmental phase, marked by changes and identity formation ,that requires a permanent and dynamic adaptation of the adolescent, ranging from feelings of acceptation to anger/anxiety and even depression (Leite, 2005) that can affect adherence to therapy and adaptation to illness. It is important to keep in mind that *being adolescent* is more important than *being diabetic* (Burroughs et al., 1997).

#### **1.1 Adherence and metabolic control**

Adherence to therapy in chronic disease is considered one of the main problems that may end in treatment failure (Leite, 2005). Kristeller and Rodin, in 1984, suggested that adherence

Predictors of Adherence, Metabolic Control and Quality of Life in Adolescents with Type 1 Diabetes 121

Differences in adherence and metabolic control, in DM1, by gender, have been reported in the literature (Mortensenn & Hougaard, 1997). Girls tend to present a weaker adherence and poor metabolic control compared to boys. Girls enter puberty earlier than boys and a poor metabolic control is associated to normal physiological changes, in adolescence, such as increased levels of hormones responsible for insulin resistance (Carroll & Shade, 2005). However, other behavioral and psychosocial factors also tend to contribute to nonadherence in diabetes such as feeling reluctant in doing self monitoring of blood glucose,

Some studies show a relationship between bad metabolic control and family dysfunction, namely conflict in the family and low family cohesion, although this relationship has not been found in other studies. In fact, higher levels of cohesion and family stability have been related to better boundary definition between family subsystems and, as a result, more incentive to autonomy, more effective family communication and better metabolic control in diabetic adolescents (Fisher et al., 1982). Also, poor social support was found to predict bad metabolic control and low adherence to self care in diabetic adolescents (Fukunishi et al., 1998). In order to overcome the difficulties, related to adherence and metabolic control, it's important to concentrate on the adolescents' social competencies, family support and friends' support (Pereira & Almeida, 2008). There are several factors, that go beyond adherence to self care in diabetes, that can influence metabolic control. Therefore, a lack of a relationship between adherence and metabolic control may be due to insufficient rigorous

The presence of a chronic disease, in a family's member, is a stressor for the entire family limiting the family's ability to go on with usual tasks and psychosocial roles requiring, as a result, flexibility in the family's system (Northam et al., 1996). Family functioning and a supportive parental style have been associated to better adherence to treatment (Manne et al., 1993). Conflict and family dysfunction predicted low adherence to self care in diabetes (Miller-Johnson et al., 1994) while higher levels of social support, cohesion and organization were associated to better metabolic control and adherence. Adolescents with better metabolic control seem to have parents that encourage independence, express feelings openly and communicate directly. On the other hand, adolescents with poor metabolic control have parents that are more critical, suspicious or indifferent to treatment (Anderson et al., 1981). However, the relationship between family functioning (cohesion, good communication, no conflict) and metabolic control is controversial since some studies found this association (Wysocki, 1993; Seiffge-krenke, 1998; La Greca & Thompson, 1998) but

Low adherence in diabetes has been associated to low family support and less parental supervision (Beveridge et al., 2006). In an initial phase, after diagnosis, adolescents receive more supervision from parents and adherence is stronger compared to late adolescence, when there is an increasing worry with body image, sexuality and independence from parental and authority figures (Jacbson et al., 1987). Relationships with others, at home or at school, play an important role in adolescence (Papalia et al., 2001). In an attempt to prove

having irregular meals and not complying with the correct insulin doses.

efforts in adherence 's evaluation (McNabb, 1997).

others have failed (Kovacs et al., 1989; Wysocki et al., 2001).

**1.2 Family functioning** 

**1.3 Family social support** 

to treatment was built on three dimensions: 1) Adherence (compliance) that refers to the degree of acceptance of the individual towards prescriptions and medical recommendation; 2) Adherence towards keeping and following the treatment that was agreed in the previous phase, and 3) Adherence (maintenance) to diabetes' self care tasks that have been integrated in the person's life style. Throughout these phases, the diabetic acquires control and develops the autonomy necessary in the maintenance phase.

Any detour from the treatment plan is defined as non adherence to therapy (Bishop, 1994) and can range from missing appointments, forgetting to take insulin (or take more or less than the prescribed amount) to not following the nutritional or the exercise plan. In DM1, adherence is often assessed through hemoglobin levels (HbA1c), (Sperling, 1996). The relationship between therapy adherence and metabolic control is complex and probably bidirectional i.e. low adherence to therapy is often preceded by a weak metabolic control and vice versa (Kakleas et al., 2009). However, there is some controversial regarding this issue. For some, HbA1c is the most valid indicator of adherence to therapy (DCCT, 1994) for others, there isn't a direct relationship between HbA1c and adherence (Silva et al., 2002).

The weak adherence to self-care in diabetes seems to result from a multifactor combination (Fagulha et al., 2004). Warren and Hixenbaugh, in 1998, found demographic variables to weakly predict adherence to self care in diabetes. Some studies have revealed that adolescents typically are less adherent to therapy than children, regarding insulin administration, exercise, nutrition and self monitoring of glucose (Hirschberg, 2001). Each adolescent apprehends and creates meanings about diabetes and its treatment's demands and how (s)he deals with them, in the social context, influences adherence to diabetes (Barros, 2003). Moreover, puberty changes, psychological dilemmas characteristic of adolescence (La Greca, 1992) and cognitive development may also contribute to an increase in non-adherence. Also, immaturity of thought, in adolescence, based on invulnerability may be one of the main causes of low adherence to diabetes treatment (Santos, 2001; Elkind, 1984), in adolescence.

In children and adolescents with diabetes, adherence is higher after diabetes diagnosis and deteriorates over time (Jacobson et al., 1987). On the other hand, non-adherence happens in average 3,5 years after the diagnosis and around age 15 (Anderson & Laffel, 1997). Compared to younger children and adults, adolescents exhibit poorer self-care behavior (Anderson et al., 1990) and poorer metabolic control (Kovacs et al., 1989).ADA (American Diabetes Association, 2003) recommends, as a therapeutic goal, that HbA1c stays below 7%.

Diabetics between 11 and 18 years old show a weak metabolic control (Mortensen et al., 1998; Fagulha et al., 2004). In the first years of diagnosis, lack of knowledge about the disease can affect metabolic control in children and adolescents (Butler et al., 2008) and, after this first phase, adolescents' compliance with treatment depends on adherence to self care tasks and to the degree of parenting supervision regarding disease management (Anderson et al., 1997). According to the authors, in an early phase, parents show more involvement in tasks related to treatment, particularly insulin administration, that best predicts metabolic control. However, throughout adolescence, parental involvement diminishes resulting in a decrease of adherence to therapy and, therefore, in a weak metabolic control.

Differences in adherence and metabolic control, in DM1, by gender, have been reported in the literature (Mortensenn & Hougaard, 1997). Girls tend to present a weaker adherence and poor metabolic control compared to boys. Girls enter puberty earlier than boys and a poor metabolic control is associated to normal physiological changes, in adolescence, such as increased levels of hormones responsible for insulin resistance (Carroll & Shade, 2005). However, other behavioral and psychosocial factors also tend to contribute to nonadherence in diabetes such as feeling reluctant in doing self monitoring of blood glucose, having irregular meals and not complying with the correct insulin doses.

Some studies show a relationship between bad metabolic control and family dysfunction, namely conflict in the family and low family cohesion, although this relationship has not been found in other studies. In fact, higher levels of cohesion and family stability have been related to better boundary definition between family subsystems and, as a result, more incentive to autonomy, more effective family communication and better metabolic control in diabetic adolescents (Fisher et al., 1982). Also, poor social support was found to predict bad metabolic control and low adherence to self care in diabetic adolescents (Fukunishi et al., 1998). In order to overcome the difficulties, related to adherence and metabolic control, it's important to concentrate on the adolescents' social competencies, family support and friends' support (Pereira & Almeida, 2008). There are several factors, that go beyond adherence to self care in diabetes, that can influence metabolic control. Therefore, a lack of a relationship between adherence and metabolic control may be due to insufficient rigorous efforts in adherence 's evaluation (McNabb, 1997).
