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Mental Health Frontiers in Clinical Drug Research-Diabetes & Obesity, Vol. 7 69
development of fine motor, problem-solving, and coping skills. The
recommended metabolic values and HbA1c levels should be in line with those
expected for age and developmental stage and should be reviewed regularly as the
child develops.
Concerning the stages of life, due to their prominent biological and psychological
significance, the challenges of adolescence and the management of type-1
diabetes in adolescence should also be highlighted. Keeping glycemic control in
adolescents with diabetes in the optimal range is highly dependent on the degree
of adherence [68], and the role of appropriate self-management and adequate
glycemic control in preventing long-term complications have been demonstrated
[82]. However, proper self-management is often not implemented in this age [83,
84]. Although chronic diabetes-specific complications are rare in adolescents,
their pathogenesis begins soon after diagnosis is made, and the acceleration of the
pathological condition is observed during the puberty phase [85]. Among
adolescents diagnosed with diabetes, glycemic control aims to keep HbA1c levels
below 58 mmol/mol (7.5%) and minimise hypoglycaemic episodes [86].
Several studies confirm that the majority of adolescents with diabetes do not
adhere to an adequate therapeutic regimen [87 - 89]. The rate of nonadherence for
glucose monitoring ranges from 30% to 80% [90]. According to Cox [91] and
Petitti [92], young people with HbA1c levels outside the target range in the US
would urgently need to develop effective treatment strategies, as the significant
reduction in therapeutic adherence and metabolic control at this stage of
developmental psychology requires clinical attention [93 - 95]. It is important to
emphasise that new treatment methods and approaches are needed given the
complexity of T1DM care in adolescence [96]. Inadequate therapeutic adherence,
through suboptimal glycemic control and diabetes-specific complications, can
have serious clinical consequences [97], can be an acute complication of diabetic
ketoacidotic coma, and can increase morbidity and associated medical conditions.
Furthermore, it can increase the number of hospitalisations and clinical visits,
leading to higher overall mortality [98, 99]. It is also associated with several
mental disorders, such as depression [88, 99], eating disorders [100], and
pathological anxiety from hypoglycemia [101]. Therefore, children with
inadequate glycemic control may face extremely severe consequences in terms of
quality of life, family relationship dynamics and functioning, and financial
burdens [102, 103].
Factors Influencing Diabetes-Specific Adherence
Factors influencing diabetes-specific adherence can be categorised into four
groups:
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●
the characteristics of the illness and its treatment,
●
intrapersonal factors,
●
interpersonal factors,
●
environmental factors.
The Characteristics Of The Illness And The Related Factors
Several characteristics of diabetes and its treatment have also been associated with
therapeutic cooperation, including the complexity of the treatment and the
duration of the illness. Regarding the complexity of treatment in general, research
has concluded that the more complex the treatment regimen, the less likely the
patient is to follow it. Indicators of the complexity of the treatment are the
frequency of self-management behaviours (i.e. how many times a patient needs to
perform one behaviour per day). Paes et al. [104] examined the prevalence of
inadequate therapeutic cooperation among 91 diabetic individuals and its
correlations with the frequency of drug dosage. Their results showed better
adherence in individuals with a lower frequency of medication (once per day) than
more frequent (three times a day) medication use. Dailey et al. [105] stated a
similar conclusion, with patients taking a single drug showing better short- and
long-term adherent behaviour than those taking two or more drugs
simultaneously.
According to the literature, a negative relationship can be found between the
duration of the illness and adherence. Thus, the longer the duration of diabetes,
the less likely the patient will show adequate therapeutic cooperation. Glasgow et
al. [67] examined adherent behaviour in various diabetes-specific areas (insulin
treatment, blood glucose measurement, diet, physical activity) and their
association with glycemic control among 93 individuals diagnosed with T1DM
(mean age 28 years). Concerning the treatment areas, a significant association was
found between physical activity and the duration of diabetes. Patients who have
been living with diabetes for less than ten years have reported higher levels of
physical activity (exercise several times a week) than those who have had diabetes
for more than ten years. Patients with a long medical history also reported a
higher proportion of foods that were not suitable for their diet, meaning that they
were less able to follow their diet. Jaros-Chobot et al. [106] investigated 183
American and 80 Polish children with T1DM (mean age 13 years) to map the
associations between adherence and glycemic control. Their results showed a
correlation between the duration of the illness and insulin treatment. Children
with a long medical history were more likely to forget their insulin injections than
those with a shorter duration of diabetes.
Mental Health Frontiers in Clinical Drug Research-Diabetes & Obesity, Vol. 7 71
Intrapersonal Factors
Several important factors were found to be associated with adherence. These were
age, gender, self-esteem, self-efficacy, stress, and comorbid depressive disorder.
According to Glasgow et al. [69], there is an association between age and physical
activity in patients with T1DM. Patients over 25 years of age reported a lower
frequency of physical activity than the younger age group. No association was
found between age and other diabetes-specific treatment areas. WeissbergBenchell et al. [107] examined these associations among 144 adolescents with
T1DM. They concluded an association between age and insulin treatment,
meaning that older people were more likely to receive inadequate insulin
treatment than younger children. Anderson et al. [108] studied 89 children (age
between 10–15 years) to map the association between adherence and glycemic
control. Their results showed that younger children reported a higher frequency of
blood glucose self-monitoring than older ones.
Research has also found a relationship between gender and adherence. Glasgow et
al. [69] found that men reported a higher frequency of physical activity than
women while consuming more calories, following a proper diet, and showing a
lower level of therapeutic cooperation with diet.
There was also a relationship between self-esteem and adherent behaviour in
terms of self-management. Patients with T1DM with higher levels of self-esteem
reported a higher frequency of physical activity and adequate insulin therapy
[109]. Murphy-Bennett et al. [110] found that lower self-esteem was associated
with less frequent self-monitoring of blood glucose levels among adolescents with
T1DM.
The role of self-efficacy has also been studied in adhering to prescribed treatment
for diabetes. According to the results of Plotnikoff et al. [111], diabetes-specific
self-efficacy beliefs proved to be the strongest predictors of physical activity.
Senecal et al. [112] reported that self-efficacy beliefs were strong predictors of
adherent behaviour, and both a sense of self-efficacy and appropriate therapeutic
cooperation predicted life satisfaction among patients with T1DM. Ott et al.
[113], in their research with 143 adolescents diagnosed with T1DM, concluded
that self-efficacy was a significant predictor of the extent of therapeutic
cooperation in diabetes.
The literature confirms that stress and emotional problems are also significantly
associated with adherence. A strong association can be found between stress and
adherence to a diabetes-specific diet (in terms of the amount and type of diet)
among patients with type 1 and type 2 diabetes. Peyrot et al. [114] examined the
relationship between adherence, diabetes-specific distress, and glycemic control
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among 57 patients with T1DM and 61 patients with T2DM. Their results showed
that the higher the psychosocial distress reported by a patient, the less appropriate
is the therapeutic interaction with the prescribed treatment regimen, and the
poorer is glycemic control. Mollema et al. [115] found that T1DM patients with
extreme fear of insulin treatment and blood glucose measurement were
characterised by lower levels of therapeutic cooperation and higher levels of
emotional distress. Schlundt et al. [116] classified T1DM patients into different
groups according to the problems they experienced in adhering to the prescribed
diet. They found that two groups of patients, emotional eaters and diet-bingers,
could have been characterised by negative emotions such as stress and depression
and inappropriate adherent behaviour.
The incidence of depression is twice as high among patients with diabetes as in
the general population [117]. Patients with comorbid depression are more likely to
develop complications [118], have poorer glycemic control [93], and are less
cooperative with the therapeutic regimen than those without depression.
Comorbid depression is also associated with higher costs [79].
Interpersonal Factors
Several studies have identified the relationship between interpersonal factors and
therapeutic collaboration. These investigations mainly focused on the relationship
between patients and health professionals and the quality of social support.
Adequate communication between patients and healthcare professionals was
associated with a higher level of adherence. Among T2DM patients, the use of
oral antidiabetics and monitoring of blood glucose levels were significantly worse
in patients who did not consider their communication with their physicians to be
satisfactory [79]. As one of the most significant components of social support
among children with T1DM, the degree of parental involvement showed a
significant correlation with adherence to blood glucose self-monitoring. Children
and adolescents with T1DM who experienced higher parental involvement in
blood glucose self-monitoring reported a higher level of daily blood glucose selfmonitoring [109]. Glasgow et al. [69] examined adherence in a sample of
adolescents and adults with T1DM, concluding that in both adults and
adolescents, illness-specific social support was associated with a higher level of
adherence in the areas of insulin treatment and blood glucose measurement. Also,
several studies have demonstrated a relationship between a low level of social
support and inadequate adherence [116, 119].
Environmental Factors
Two environmental factors, namely high-risk situations and environmental
systems, have been associated with inadequate adherence among diabetic youth.
Mental Health Frontiers in Clinical Drug Research-Diabetes & Obesity, Vol. 7 73
Adherent behaviour must also be maintained in an ever-changing environment
(e.g. home, school, workplace, etc.) with different needs and priorities. As
circumstances change, patients face various challenges to maintain proper selfmanagement. Patients are often faced with a choice between caring for diabetes
management and paying attention to other life-giving priorities. Situations related
to inadequate adherence are called high-risk situations [120].
Schlundt et al. [116] developed a taxonomy of high-risk situations that make it
difficult for patients to comply with dietary requirements. These situations may be
related to consuming too much or too little food or situations that involve
difficulties in incorporating the meal into a particular social context or time of
day. According to Schlundt et al. [120], loneliness, boredom, and interpersonal
conflicts, as well as meals at school, social events, or holidays, can all be highrisk situations for adhering to a proper diet. Different categories of high-risk
eating situations have also been identified for adults with diabetes that are
resistant to temptation, eating out, situations under time pressure, and situations
where there is competition between priorities and social events. Other research
has shown that environmental barriers can predict adherent behaviour associated
with different areas of diabetes self-management [121, 122].
THE PURPOSE OF THE STUDY: THE CONNECTION BETWEEN
MENTAL HEALTH, ADHERENCE AND DIABETES
The aim of the research is to investigate the psychological characteristics and
adherence of children and adolescents with type 1 diabetes. Based on the
Hungarian and international literature, no detailed and complex adherence
questionnaire has been developed so far. For this reason, in the pre-research
phase, a complex questionnaire with 9 subscales was created following the
requirements of the standard test development procedure, which was already used
as a measurement tool in the present research. Furthermore, the aim of the
research is to determine the effect of mental health factors on adherence so that
we can receive information concerning the psychological effects of living with
diabetes.
Sample Characteristics
This research is a part of complex research where healthy and chronically ill
children are compared by their mental health. In this present study, we only focus
on children with T1DM and their mental health following its various areas.
The research was based on the Diabetes Adherence Survey 2017 (hereinafter DAS
2017). The study was carried out partly in Pediatric Psychology and Psychosomatic Unit at the Institute of Pediatrics of the Faculty of Medicine at the
74 Frontiers in Clinical Drug Research-Diabetes & Obesity, Vol. 7 Nagy et al.
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University of Debrecen and partly at some primary and secondary educational
institutions in Debrecen.
Experimental Group: Children Diagnosed With Type-1 Diabetes
Children diagnosed with T1DM participating in the research (N=114) received
treatment in the Endocrinologocal Ward of the Clinical Centre of the University
of Debrecen. The research was carried out at the Pediatric Psychology and
Psychosomatic Unit at the Institute of Pediatrics of the Faculty of Medicine at the
University of Debrecen during the study (ethical permission ID: 4528A -2016,
provided by the regional ethical committee [DE RKEB/IKEB]). The children and
their parents participating in the study were informed in written consent about the
possibility to participate in the research, its purpose and its voluntary nature.
Table 1. Sociodemographic and illness-related characteristics of children belonging to the experimental
and control group.
Sociodemographic Data Experimental Group
Age (in years) (M, SD)
Gender (N, %)
boy
girl
Family structure
One parent (M, SD)
Two parents (M, SD)
Relatioship with mother
Biological mother (M, SD)
Adoptive mother (M, SD)
Foster mother (M, SD)
N/A (M, SD)
Mother’s educational level
Tertiary level
Secondary level
Primary level
Data related to T1DM
Duration (in years) (M, SD) 6,72 (3,78) -
HbA
1C
Type of insulin therapy
MDI
CSI
14,13 (2,47) 14,08 (1,99)
62 (47,69)
68 (52,31)
44 (33,85)
86 (66,15)
99 (76,15)
1 (0,007)
0 (0)
30 (23,297)
30 (23,2)
55 (42,3)
15 (11,5)
8,32 (1,53) -
58 (44,61)
72 (55,39)
Control
Group
76 (42,93)
101 (57,07)
49 (27,69)
128 (72,31)
117 (66,1)
2 (1,1)
5 (2,9)
53 (29,9)
55 (31,1)
117 (66,1)
5 (2,8)
-
-
Mental Health Frontiers in Clinical Drug Research-Diabetes & Obesity, Vol. 7 75
The youngest child was 9 years old, and the oldest was 18 years old, and the mean
age of the sample was 14.17 years (SD=2.18). Data collection was carried out
between September 2017 and May 2018. Regarding the gender distribution,
52.6% of the sample were boys (N=60), and 47.4% were girls (N=54). 67.5% of
the participants live in an intact family, 21.9% live with only one parent (and/or
its new partner), and 8.8% live with foster parents. 16.7% have no siblings, while
83.3% have at least one sibling. The mean age of children at the occurrence of
symptoms of T1DM was 8.18 years (SD=3.9). By the time of our research, the
mean duration since diagnosis was 7.1 years (SD=3.8). 43.9% of children use an
insulin pump, while 56.1% receive conventional insulin therapy. For children
receiving insulin pump therapy, the mean duration of using insulin pump was 3.7
years (SD=2.3). The sociodemographic and diabetes-specific characteristics of the
sample are shown in Table 2.
Table 2. The items and factor weights of the Diabetes Adherence Questionnaire (DAQ) (N=114).
Items Factor Weight
1. Factor: Self-management
The factor expresses the understanding, organisation and execution of the treatment regulations of diabetes
and their careful management according to the treatment protocol
I follow the suggestions of the schedule. 0,385
I eat an appropriate amount of food. 0,485
I eat at an appropriate time (breakfast, snack, lunch etc.). 0,352
I take an appropriate amount of insulin. 0,234
I take insulin at the appropriate time. 0,364
When taking insulin, I take my blood pressure into account. 0,425
I measure my blood glucose level in all circumstances. 0,412
I record my blood glucose level regularly. 0,236
I do my best to control and keep diabetes in line. 0,352
During meals, I eat an appropriate amount of food following my diet 0,354
2. Factor: Emotional feedback (emotional reactions associated with blood sugar level measurement)
The factor expresses diabetes-specific emotional reactions (e.g, related to blood glucose levels).
I prefer to let my family members communicate with my environment about
diabetes.
I prefer to communicate with my environment about diabetes on my own. 0,385
It evokes guilt when my blood sugar is high. 0,541
It evokes fear when my blood sugar is low. 0,428
I can control my fears related to diabetes. 0,395
I become afraid because of my high level of blood glucose 0,394
0,42
1
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(Table 2) co nt.....
Items Factor Weight
1
I become afraid because of my low level of blood glucose 0,457
3. Factor: Social support (parents and family)
The factor expresses diabetes-specific family support
My family encourages me to keep my diet. 0,299
My family remembers me to keep my diet. 0,318
My family members control my appropriate consumption of meals 0,361
My family members prepare dietary meals for me. 0,428
My family members commend me when I keep my diet and eat healthily. 0,379
My family remembers me when I eat inappropriate food. 0,364
My family commends me for doing physical activity. 0,502
My family members encourage me to pursue sport. 0,428
My family is glad when I appropriately treat diabetes 0,395
My family commends me when following the schedule. 0,382
My family members help me in changing the treatment on the basis of my blood
glucose.
0,425
4. Factor: Social support (peer relationships)
The factor expresses the attitude of the child with diabetes towards peer relationships.
The relationship with friends is more important than treating diabetes. 0,348
I am discriminated in my friendships due to diabetes. 0,531
I avoid my peers becoming aware of my diabetes if possible.
0,381
It is disturbing when my friends ask about diabetes. 0,297
Most of my friends are not diagnosed with diabetes; thus, I feel different. 0,405
5. factor: Denial of the disease
The factor involves denying the fact of diabetes and its conscious or unconscious ignoration.
Nothing wrong can happen to me if I do not follow the treatment schedule.
0,295
I try to forget diabetes. 0,308
Sometimes I forget the treatment of diabetes. 0,328
6. Factor: Positive adherence
The factor expresses the positive effect of adherence to treatment regulations and regular exercise and
sports on physical and mental well-being.
I do enough physical activity. 0,451
The more I follow my treatment schedule, the better I feel. 0,392
7. Factor: Negative adherence (the burden of the treatment)
The factor expresses the negative consequences of living with diabetes on everyday life (e.ge.g., social
relationships, leisure, and school activities).
My treatment causes inconvenience. 0,364
My treatment requires too much time and work. 0,421
Mental Health Frontiers in Clinical Drug Research-Diabetes & Obesity, Vol. 7 77
(Table 2) co nt.....
Items Factor Weight
Diabetes limits my friendships. 0,381
Diabetes strongly limits my lifestyle. 0,356
The appropriate treatment of diabetes requires a huge amount of time. 0,348
My diet significantly limits my lifestyle. 0,360
Diabetes constrains me from pursuing sport. 0,295
Diabetes limits my leisure activities. 0,278
Diabetes limits my school activities. 0,347
8. Factor: Social support (medical team)
The factor expresses the child’s relationship and attitude toward the medical team and the perception of
their behaviour.
I trust doctors. 0,395
Doctors are too busy to discuss diabetes with me. 0,402
Doctors understand that diabetes hinders me from doing things that are important
for me.
Doctors are friendly and can easily talk to me. 0,415
I trust nurses. 0,395
9. Factor: Vision (worries)
The factor examines concerns and fears about the long-term negative consequences of diabetes (e.ge.g. in
the areas of marriage, childbearing, further education, and employment).
I am afraid whether I will marry due to diabetes. 0,361
I am afraid whether I will have any child due to diabetes. 0,328
I am afraid that it will be harder to find a job due to diabetes. 0,297
I am afraid that I cannot finish my studies due to diabetes. 0,368
I am afraid that diabetes influences my physical appearance. 0,328
I am afraid that I will have medical complications due to diabetes. 0,401
0,414
1
Control Group
Healthy children and adolescents participating in the study (N=233) were
randomly recruited. Similar to the patient group, the members of the control group
were informed in a written consent about their participation in the research, its
methods, its purpose and its voluntary nature. The examined children were
recruited from the 9th to 12th grades of a vocational high school and from the 5th
to 8th grades children of a primary school in Debrecen. The exclusion criterion
was the presence of any chronic disease. Thus, a total of 56 children were
excluded. The mean age of the sample was 14.08 years (SD=1.99). The
sociodemographic and diabetes-specific characteristics of the sample are shown in
Table 1.
78 Frontiers in Clinical Drug Research-Diabetes & Obesity, Vol. 7 Nagy et al.
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Applied Tools
Demographic Questions
First, a demographic questionnaire was used to determine the following
information related to the child:
●
gender
●
age
●
type of residence (capital/county seat/big city/small town/village/farm)
●
the highest educational level of the mother/foster mother
●
the highest educational level of the father/foster father
●
structural change in the family and its nature, if any (‘yes, my parents are
divorced and my mother is raising me alone’; ‘yes, my parents are divorced and
my father is raising me alone’; ‘yes, my parents are divorced, my mother is
raising me and has a new relationship; ‘yes, my parents are divorced, my father
is raising me and he has a new relationship’; ‘I don't live with my parents’;
‘other’)
●
number of siblings (both biological and foster)
●
birth order
●
subjective financial situation
The Creation of the Diabetes-Specific Adherence Questionnaire
As the first step of our research, we developed an adherence questionnaire to
explore the therapeutic collaboration of children and adolescents with type 1
diabetes and the factors influencing it. Reviewing the literature, we found ten
relevant international questionnaires that examined the attitudes, adaptation, and
therapeutic interactions of children and adolescents with T1DM to diabetes,
treatment and lifestyle changes. However, these questionnaires only cover certain
sub-areas of adherence. The researchers’ approach is mostly similar, but their
approaches are different in terms of content. Thus, the items of the ten
questionnaires were categorised into content categories by metaanalysis. Then
their proper coherence was examined, overlapping contents were omitted and
merged, thus avoiding the loss of the content categories. After sorting the content
categories of the previously applied questionnaires, independent juries'
finalisation of the content categories was done. Thus, the first version of the
questionnaire was created by translating ten English questionnaires and then
translating them back into the original language, which contained 167 statements
in this form. The questionnaires used were the following:
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