**1.5 Illness representations**

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

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

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

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 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

the onset and course of diabetes (Nunes & Dupas, 2004).

adherence (Hanson et al., 1989).

with friends' help.

**1.4 Parental coping** 

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

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 et al., 2008).

#### **1.6 School support**

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 diabetes (La Greca et al., 1995).

Predictors of Adherence, Metabolic Control and Quality of Life in Adolescents with Type 1 Diabetes 125

illness have failed to incorporate gender (Miller & La Greca, 2005), the present study

A convenient sample of 170 subjects participated in the study: 85 adolescents and 85 family members that accompanied the teenager to their routine medical appointments, in a diabetes pediatric unit in two central Hospitals, and in a Diabetics Association. All teens received treatment in the hospital and therefore no differences were present between the

All participants (teenagers and family members) were volunteers. Adolescents' criteria for inclusion were: age between 12 and 19 years, fulfilling ISPAD (1995) criteria for the diagnosis of type 1 diabetes, having a diagnosis longer than a year, being in ambulatory treatment, absence of another chronic and/or mental disease, not being pregnant and

Questionnaires were answered separately by adolescents and family members after they had been informed of the study's goals and filled the informed consent. The value of glycated hemoglobin (HbA1c) was determined by a nurse who collected a drop of blood from the adolescent before the medical appointment. Criteria of good metabolic control was based on ISPAD (2009) i.e. smaller than 7,5% is considered optimal, 7,5% - 9,0% suboptimal

**Clinical, Socio-Demographic Questionnaire** (Pereira et al., 2010) that reports gender and age in adolescents and their family members as well as metabolic control (glycated

**Brief Illness Perception Questionnaire** – Brief-IPQ – Broadbent et al. (2006), (Portuguese version of Figueiras & Alves, 2007). The Brief-IPQ is a 9 items questionnaire, measuring cognitive and emotional representations of illness, that includes nine dimensions of illness perceptions: consequences, timeline, personal control, treatment control, identity, concern, coherence, emotional representation and causal representations. Both adolescents and parents answered the questionnaire. *Higher results indicate a more threatening perception of illness.* Due to the fact that each subscale includes only one item, it is not possible to calculate an alpha. As a result, like in the original version, pearson correlations between dimensions were calculated. In adolescents, significant correlations were present between consequences and emotional representation (r=.635), personal control and coherence (r=.511) and personal control and treatment control (r=.371). In the family sample, significant correlations were obtained between consequences and emotional representation (r=.558), personal control and

*Self Care Inventory – SCI* - La Greca, A. (1992), (Portuguese version of Almeida & Pereira, 2010). It´s a 14 items questionnaire assessing adherence to diabetes treatment's

considers gender in the regression models.

having normal cognitive development.

and higher than 9%, high risk.

**2.3.1 Adolescents and parent** 

sample from the Diabetics Association versus Hospitals.

hemoglobin) and duration of disease, in the adolescent.

coherence (r=.522) and between concern and coherence (r=.324).

**2. Methods** 

**2.2 Procedure** 

**2.3 Instruments** 

**2.3.2 Adolescents** 

**2.1 Sample characteristics** 

When faced with the choice of appropriate self-care behavior, older adolescents have better problem solving skills but are more vulnerable to non-adherence in the face of peer pressure (Thomas et al., 1997). Another study showed that adolescents, who perceive their friends reacting negatively to their diabetes' self-care behavior, report more stress which, in turn, is associated to poor metabolic control (Hains et al., 2007).

Research examining the positive and negative aspects of friends and peers, on diabetes outcomes and psychological well-being, is not clear. There seems to be more evidence that conflictual relationships are more harmful than supportive relations are beneficial, which is consistent with the literature on healthy adults (Helgson, 2006). Besides peers' support, teachers' support is also important. A study found that 9 % of parents had to change glucose monitoring and 16% changed treatment administration because of lack of support from teachers (Amillategui et al., 2007). In fact, teachers in general need to be knowledgeable of hyperglycemia and hypoglycemia's episodes in order to assist the adolescent if needed. Support from friends and peers are key factors that help the integration of the adolescent teenager in the school setting, facilitating adaptation to diabetes.

Although diabetes does not cause pain on adolescents, impacts nonetheless, the adolescent and family's daily living and, therefore, the quality of life of all involved (Hanas, 2007) at physical, emotional, social and family 's levels (Pereira et al., 2008).

#### **1.7 Quality of Life (QOL)**

Girls perceived lower levels of QOL compared to boys. Worries about metabolic control increase with age but, regardless of gender, as age increases QOL decreases (Hoey et al., 2001). Adolescents who monitor their glucose levels, several times a day, reported better quality of life (Novato, 2009). The monitoring of blood glucose levels allows the teenager to know the variation of blood sugar, over time, perceiving what behaviors impact metabolic control, resulting in better quality of life (Novato, 2009). Regarding the association between quality of life and adherence to self-care in diabetes, literature is contradictory. Diabetes treatment has adverse effects on quality of life (Watkins et al., 2000). In fact, adolescents with diabetes need to follow a set of requirements that can negatively impact the perception of their quality of life and interaction with others. However, other studies conclude that adherence to diabetes care is not related to quality of life (e.g. Snoek, 2000). Diabetics with good metabolic control (measured through glycated hemoglobin) show better quality of life (e.g Glasgow et al., 1997; Silva, 2003) however, in some studies, this relationships has not been found and, in other studies, this relationship is very weak or does not exist (e.g. Grey et al., 1998; Laffel et al., 2003). Family also plays an important role in the perception of adolescents' QOL because QOL is affected by how the family deals with the disease (Hanson, 2001). Family conflict predicts lower QOL in adolescents (Dickenson et al., 2003). Family environment was shown to influence QOL as well as adherence and metabolic control in adolescents with diabetes (Pereira et al., 2008).

While there is a growing interest in psychological issues in diabetes, it is important to identify which variables predict better outcomes. The present study aims to answer this question namely understanding the relationship between psychological variables and diabetes outcomes. The purpose is to find the best predictors of adherence, metabolic control and quality of life in adolescents with type 1 diabetes taking in consideration adolescent variables and family variables. Due to the fact that research on adolescents and chronic illness have failed to incorporate gender (Miller & La Greca, 2005), the present study considers gender in the regression models.
