The descriptive analysis showed that disease onset occurred early in the participants of this study – at a mean age of 5.2 years. HbA1
values were above recommended levels in 61%, indicating chronically inadequate glycemic control. Metabolic control was worst in adolescents. This finding agrees with reports in the literature and is caused both by difficulties in controlling blood glucose due to reduced insulin sensitivity in adolescence and by psychological factors at this age.6
Ten percent of participants had started treatment with CSII at the time of the study, and the remaining participants continued with intensified insulin therapy. Because of the low number of patients receiving CSII, intergroup differences could not be established.
We expected that children and families with a family history of diabetes would have greater knowledge of the disease and competence in self-care. Our results, however, show an inverse relationship between HbA1c
and a family history of the disease. Possible explanations are a reduced perception of risk as affected individuals become accustomed to the disease, leading to a relaxation of control, or higher levels of stress and anxiety interfering with self-care. It would be interesting to analyze this finding in future studies. Another surprising result was that 89.4% of the participants experienced at least one hypoglycemic episode per week and almost 50% had between two and three hypoglycemic episodes weekly; these episodes were most frequent in participants with the best metabolic control. The aim of T1D treatment is to achieve adequate metabolic control to prevent or delay the development of chronic complications, reduce acute complications – especially hypoglycemic episodes, and achieve good quality of life; however, achieving these goals with conventional treatment is hampered by children’s and adolescents’ physiological, psychological, social, and emotional characteristics.44
Importantly, however, children and adolescents are also at risk of developing complications. Twelve years after diagnosis, more than 50% develop complications or comorbidities.44
At all ages, mortality is higher in children with T1D than in their disease-free peers and is generally due to acute complications.45
A notable finding was the low attendance at diabetic camps, given that the aim of these is to provide young people with knowledge about their disease, skills for its management, and opportunities to share experiences with their diabetic peers, as well as to improve their TE, autonomy, and quality of life. This finding can be explained in children aged 4–6, since attendance at camps starts at the age of 6 years; even so, less than 50% of 10–13 year olds had attended at least once.
Analysis of the drawings and their explanations indicated that most participants had well-balanced personalities with appropriate-for-age objectivity, extraversion, maturity, energy, self-control, sensitivity, originality, and empathy. Some data, nevertheless, could indicate affective or psychosocial difficulties. One-quarter (26.4%) did not include themselves in their drawings, even though the theme of the activity was “diabetes and me,” possibly indicating failure to accept the disease. Irrespective of whether participants included themselves in their drawings or not, the most commonly included elements were insulin injections, glycemic monitoring, and diet, indicating that treatment and metabolic control were the most important aspects of the disease to the participants, sometimes positively – to control the disease – and sometimes negatively, in the form of worry and rejection of the disease. Importantly, the disproportionately large size of needles and blood drops in many of these drawings indicate the huge impact of these techniques in the participants’ lives. Some participants personified diabetes as an inseparable friend, a devil that held them prisoner, a devouring elephant, an enormous insect, a ghost that, if touched, triggered the disease, or as a threatening, hostile environment. Symbolic images, such as bothersome elements (eg black tunnels, dark houses, storms etc), or aggressive or legendary animals symbolizing the “harmer” are frequent in the drawings of cancer patients.47
levels were higher in girls than in boys. Their drawings, however, were more frequently colored in, were better proportioned, and showed greater joy and resilience. In contrast, other studies evaluating psychological features and quality of life have found that women – including girls – have worse results.48
Our results could be explained by greater concern for esthetic issues in girls and a higher level of maturity than in boys of the same age. To elucidate the differences between girls and boys and men and women in the experience of disease, future sex-based studies are required.
Age range was related to symmetry and the number of negative emotional indicators. Lack of symmetry can be explained by age in smaller children, who have acquired less pictorial skill. A notable finding, however, was the lack of symmetry in 65.4% of drawings by 12- and 13-year-olds, and in 54.5% of those by 10- to 11-year-old girls. Drawings with three or more negative emotional indicators were mainly rendered by adolescent boys. In contrast, stigma was more frequently perceived by girls; 16.7% of 12- and 13-year-old girls drew images suggesting stigma and low self-esteem. These findings could be related to the onset of adolescence and rejection of the disease. At this age, the psychological impact of T1D may be increased by the social stigma of having a disease and of feeling different and being treated as such.50
In industrialized countries, chronic disease is a tragedy because it fails to fit much-vaunted stereotypes of the healthy, vigorous, athletic, and independent individual.51
Participants with fewer hypoglycemic episodes produced more colorful drawings. The use of color was associated with joy and vitality, suggesting fewer symptoms and less anxiety in the personal, family, school, and social environment. HbA1c
was directly related to the number of negative emotional indicators. A lack of symmetry was directly related to lower HbA1c
levels, which may in turn be related to age, since younger children had lower HbA1c
levels and their drawings also showed less symmetry. No significant differences were found in the drawings by attendance at diabetes camps or patient associations. Significant differences, however, were found by the participant’s birth order in the family. Smaller children with two or more older siblings showed more signs of stigma. The demands of metabolic control may make children with T1D feel different from their older siblings, who act as models. Children with T1D can have poor self-image and can perceive themselves as defective or as weaker than their siblings and peers, intensifying their feelings of inferiority and fear of rejection.52
A diagnosis of T1D marks a “before and after” in the lives of children and their families. A recent review reported that a mean of 35% of parents had psychological disturbances at the moment of diagnosis and that such disturbances persisted in 19% between 1 and 4 years later. These problems are associated with greater stress and anxiety in children, more problematic behavior, lower quality of life, and poorer T1D management.53
In the DAWN Youth survey, performed in 18- to 25-year-olds with diabetes, 25% of participants had insufficient psychological well-being; between 12% and 17% experienced shame and discrimination; 20% believed that diabetes impaired their work performance; and 39% their academic performance.49
Because of the demands of metabolic control and treatment, coping with a chronic disease since childhood, and the physical, psychological, and social problems provoked by T1D, children, adolescents, and their families are in a vulnerable position, which could lead to future adaptation problems. Consequently, there is a need to explore new instruments that could foster participation and facilitate communication among children with T1D and their families and health teams. Drawing has provided valuable information and has also been considered effective in studies of children affected by physical abuse, neurological alterations, mental illnesses, and chronic diseases such as asthma, cancer, and AIDS; this technique has also been employed to elucidate the experience of natural catastrophes, child labor, and social changes.15
In the present study, in addition to the graphic drawing-related variables (color, size, stroke, and symmetry), analysis of the general impression of the picture was useful as it helped us to consider all the drawing’s dimensions, including the drawer’s age and context. Also useful was the use of qualitative categories based on thematic content. The investigators participating in this study included nurse educators, teaching nurses with research experience, psychologists, and anthropologists, allowing our analysis to be performed from clinical, psychological, and sociocultural perspectives. Drawing is an inexpensive technique and is readily accepted by young people, including adolescents. Although further research is required, drawings and their explanations, in this study, allowed the impact of diabetes on young people and their families to be explored and aided communication with the health team, especially nurses.
Despite the large sample, which allowed an accurate and reliable statistical analysis, this study has certain limitations concerning participant follow-up. Some signs clearly indicating that the drawers were experiencing stigma, low self-esteem, or rejection of the disease could be confirmed by the health team. Sometimes the drawing revealed hitherto hidden problems. A psychological examination and long-term follow-up would have been beneficial. Also beneficial would have been analysis of other socioeconomic and cultural variables, such as family income, religious beliefs, and academic performance. Repeating the study to determine whether the main features of the drawings were maintained or modified by age or the course of T1D would also have been interesting.