**1.2 Family functioning**

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

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

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.,

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,

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

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

develops the autonomy necessary in the maintenance phase.

2002).

1984), in adolescence.

stays below 7%.

metabolic control.

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

#### **1.3 Family social support**

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

Predictors of Adherence, Metabolic Control and Quality of Life in Adolescents with Type 1 Diabetes 123

all situations and, as a result, family life needs to be organized and centered on the

The self regulation behavior model (Leventhal et al., 1992) emphasizes the importance of beliefs regarding adherence to treatment. In fact, illness representations play a role in personal decisions towards adherence to treatment, in diabetes' self care (Gonder-Frederick et al., 2002). In adults, recent research found that illness representations regarding diabetes accounted for the diversity in disease-related functioning (Petrie et al., 1996). Illness representations are concerned with those variables that patients themselves believe to be central to their experience of illness and its management. Edgar and Skinner, in 2003, described Leventhal's five dimensions of illness representations (Leventhal et al, 1980; Leventhal et al., 1984): *identity,* the label and symptoms associated with the illness (e.g., thirst); *cause,* beliefs about the factors responsible for the onset of illness; *timeline,*  perceptions about the duration of illness; *consequences,* illness expected outcomes regarding physical, psychological, social, and economic functioning on a daily basis and in the long term; and *control/cure/treatment,* beliefs regarding the cure of the disease and patient's control over it. Later research, extended the original model adding more items by splitting the control dimension into personal control and treatment control; including also a cyclical timeline dimension; an overall comprehension of illness, and finally, an emotional

In adolescents with diabetes, illness representations have been associated to medical and psychological outcomes. In particular, treatment effectiveness' beliefs have been associated to self-care (Griva et al., 2000; Skinner & Hampson, 2001; Skinner et al., 2002) and perceived consequences to lower levels of emotional well-being (Skinner et al., 2000; Skinner & Hampson, 2001). Illness representations, particularly consequences and emotional representations have been found to predict quality of life (Paddison et al., 2008). The belief that diabetes was a temporary disease, than a lifelong condition, and the perception that diabetes had serious consequences predicted poor metabolic control. Also a perception of control, over the course of illness, has been positively associated to quality of life (Paddison

Most of the research on DM1 focused on family support and its implications on adherence, as previously described and did not take in consideration school's support. However, managing a chronic illness in adolescents, who are trying to become independent from their families and integrate in their peer group, is not easy (Holmbeck et al., 2000). In fact, as the adolescent grows, peer relationships become paramount and an important source of emotional support (Wysocki & Greco, 2006). However, research on the implications of peers support on adherence, metabolic control and quality of life is scarce. Peer conflict has been associated to poor metabolic control in girls (Hegelson et al., 2009) and friend support has been related to adherence to blood glucose testing (Bearman & La Greca, 2002). Regardless of whether support from friends is associated to diabetes self-care and metabolic control, support from friends may always help adolescents to better adjust psychologically to

illness (Brito & Sadala, 2009).

**1.5 Illness representations** 

et al., 2008).

**1.6 School support** 

diabetes (La Greca et al., 1995).

representation of the illness (Moss-Morris et al., 2002).

they belong and are like their peers, adolescents may abandon the therapeutic regimen (Fagulha et al., 2004). In fact, diabetes treatment does not help adherence i.e. daily insulin administration and the fact that diabetes treatment only avoids negative repercussions in the long term without bringing positive consequences, creates difficulties regarding adherence (Hanson et al., 1989).

Research has shown a relationship among social support, adolescents/family's characteristics and metabolic control in DM1 (Hanson et al., 1989; Wysocki, 1993). A family that provides warmth, advice, and adequate problem solving's strategies promotes adherence (Ellerton et al., 1996). From a developmental perspective, during childhood, parents assume the responsibility for the treatment regimen, however, in adolescence, the responsibility tends to be transferred to the adolescent and often, one or more treatment's components may not be followed. Family support is considered more important for younger adolescents or for those with a shorter duration of the disease (Stern & Zevon, 1990). Parents are the bigger suppliers of social support (more than friends) in diabetes treatment (Hanson et al., 1989) and, as a result, adolescents with parents less involved or with parents that provide poor support show less adherence to therapy and show a lower metabolic control. Nevertheless, in some studies, parental support has been positivity associated to adolescent's adherence but not to metabolic control (Hanson et al., 1989). The authors defend the hypothesis that family support may have a direct effect on adherence given parent's supervision over treatment's tasks. Due to the need for autonomy and independence, parents' support to deal with diabetes' psychosocial tasks may not always be desirable and adolescents may prefer to solve their problems alone or with friends' help.

#### **1.4 Parental coping**

There are few studies regarding parents' coping strategies towards diabetes. Some studies reveal that parents cope well with their children' diabetes (Macrodimitris & Endler, 2001) but others have problems adapting to the disease (e.g. Kovacs & Feinberg, 1982). Adequate coping strategies to deal with diabetes include family involvement and/or sharing tasks, participation of adolescent and family in support groups, knowledge about the disease, use of assertive behaviors in social environment and reorganization of meals. Recently, a study revealed differences between fathers and mothers regarding the use of coping strategies (Correia, 2010). Mothers show greater responsibility, in the daily care tasks of the diabetic adolescent, being responsible for blood glucose records, meals plan and insulin administration (Zanetti & Mendes, 2001). In fact, mothers often seek information regarding the onset and course of diabetes (Nunes & Dupas, 2004).

The strategies used by caregivers may create potential difficulties and obstacles to adherence and metabolic control in diabetes. Sometimes, when confronted with chronic disease, parents' response to stressful situations may lead to a family rupture influencing, as a result, the adolescent and family's adaptation to illness (Trindade, 2000). Some parents, after the diagnosis, cease participating in social parties and forbid the adolescent to eat sweets, transforming social interactions that involve food, in uncomfortable situations for the adolescent, particularly when related to peers (Nunes & Dupas, 2004). This type of coping strategies exacerbate dependency in the adolescent with diabetes increasing parent's stress since they feel they need to protect and control the adolescent in all situations and, as a result, family life needs to be organized and centered on the illness (Brito & Sadala, 2009).
