Chronic diseases, such as childhood diabetes mellitus (DM), are a challenge for sick children and their families. Paediatric DM is characterized by a complex therapeutic management treatment, which has a physical and psychological effect on the whole family and entails multiple losses for the parents. Investigators point out that parents of children with DS react to the diagnosis with anger, denial, frustration, and depression and that mothers differ in their reactions from fathers. The teenager goes through a very intense period of his life, full of emotional tensions and outbursts, anger, sorrow, fear, and shame for his desires, thoughts, and himself. Thus, a disease in the period of adolescence is very likely to harm the adolescent’s self-image and negatively affect body image and perception of strength and ability. For this reason, the investigations carried out in the context of this field are necessary to focus not only on the needs of the children but also on those of their parents, as this is how it can be achieved better control. Despite all the difficulties in the management of the chronic disease of their child, it seems that the families of diabetic children adequately respond to the demands of intensive care and probably manage satisfactorily the psychological, social, and physical levels of their child’s chronic illness.
diabetes mellitus, families, parents, children, psychological characteristics
Children and teenagers are a special category of patients. A child suffering from a disease does not just as easily as an adult make sense of his condition, be patient and bear the program and the care it needs to follow. For a child, the pain associated with an injection, for example, may be perceived as punishment, and all the procedures related to the treatment of the disease make him feel that he is different from the other children, that it is problematic.
The teenager goes through a very intense period of his life, full of emotional tensions and outbursts, anger, sadness, fear, and shame for desires, thoughts, and himself. Thus, a disease in adolescence is very likely to harm the adolescent’s self-image and negatively affect body image and perception of strength and ability.
A disease that, apart from adults, is found often in children and adolescents is diabetes mellitus (DM). In fact, the number of children aged < 5 years in Europe that will present type 1 DM is expected to double by 2025 [1]. The ways in which a family is involved in the illness of one of its members, in recent years, has greatly occupied many scholars, and if still not clearly and adequately defined, they all tend to agree on the multi-factorial nature of this situation. Diagnosing childhood DM can be a particularly stressful and unpleasant event for parents and the whole family. The stress of the family becomes more intense during events that cause depression, anxiety, anger, or even fear [2–5]. This first phase is followed by a period where family members, affected by a variety of interpersonal and environmental factors, all try together or separately to deal with this new condition [6].
Adjustment is defined as the degree to which parents manage to deal with the psychological, social, and physical level of the chronic disease of the child or children [5]. Consequently, the parents, who are ultimately responsible for the daily care of the child suffering from DM, are asked to learn various adaptive techniques so that they successfully take care of the day-to-day matters that concern the child’s illness [5]. In any case, and because dealing with a chronic illness is stressful and quite difficult for many families, psychosocial support is indicated for families with children with DM, regardless of whether often the families of diabetic children of school age seem to respond satisfactorily to requirements of intensive care [7].
There are four main categories of stressors for children and adolescents with DM: People (friends, family, people from school), the self (personal disappointments and failures, physical handicaps, boredom), the environment (school, work), as well as a fourth category referring to the absence of stressors factors and ambiguity (for example, answers such as “I’m not sure” or “various things”). According to Hema et al. [8], the treatment modalities concern three general themes: submission, personal responsibility, and ambiguity.
Also, in the same research, children and adolescents with type 1 DM experienced daily stressors factors similar to those they would describe for children without DM, with only 2.35% of weekday stressors being associated with DM. The younger children (8−12 years) reported more peer-related stressors than cousins and siblings. Adolescents (13−18 years old) described more stressors related to themselves, their parents, and school. The majority of the management factors involved in the underwriting personal responsibility and age differences arose. The teenagers used alternative thinking more often and discussion, while younger children choose an alternative activity to help others and have an emotional reaction. Almost ¼ (23%) of the responses were about family, and family members listed more often were siblings and parents. On the subject of the family, younger children reported an older percentage of responses related to siblings, while older children had more relevant answers with their parents [8].
A survey showed that more than half of the children with DM showed mild to moderate symptoms of anxiety or depression, and 70.9% of their mothers had high levels of open expression of their emotions [9]. The depressive symptoms in children may contribute that they suffer from increased maternal stress, low functionality family, and increased depressive symptoms in mothers [10].
4.1 The phases of managing the diagnosis by the parents
A study by Seppanen et al. [11] is based on six phases that parents go through when trying to manage the diagnosis of DM in their children. These are (a) mistrust (where parents question the diagnosis), (b) the lack of information and guilt (where parents look for the cause of the illness of their child and feel guilty), (c) learning of care, (d) normalization (where the parents were now ready to return home together with the child suffering from DM), (e) the uncertainty (which is related to the changes that the necessary cares impose on the daily life of the family), and (f) reorganization (where parents adjust in the diagnosis and care of the child). Those phases are characterized by different levels of stress and a sense of control, as well as by different management principles [11].
Other researchers [12] noticed that parents of children with DM reacted to the diagnosis of the condition with anger, denial, heartbreak, and frustration. These may be also described as mourning reactions to the loss that causes the diagnosis. The word “loss” is a term that expresses the loss of an important person from death. It is the cause of lamentation (which constitutes an emotional reaction) and mourning (which refers to the culturally certain practices with which lamentation is expressed) [13, 14]. The diagnosis of childhood DM involves multiple losses for the parents, which they are reminded of on a daily basis [15]. The same researchers mention some of them, as pointed out by various studies, such as the loss of the healthy child that the parents thought they had, the loss of a certain way of life, the loss of freedom, the feeling that they are capable of protecting their child, etc.
4.2 Parents’ reactions to the reality of the diagnosis
When parents were asked to describe their experience of having a 7-10-year-old child with DM, they started with how they felt at the diagnosis, reporting mainly feelings similar to those related to grief [16]. The periods of illness or re-entry of their child in the hospital strongly provoked the grief of the parents after they brought back memories from the diagnosis phase. Most parents reported that the management of DM and awareness of the consequences of limited control caused them to repeatedly continue stress and anxiety even many years later after the diagnosis and remained anxious about the future health of their child. During the interviews, the mothers were more likely to refer to feelings in relation to the fathers and to recognize the connection between specific events and lasting feelings of sadness. Study data showed that a child with DM can affect their relationship as a couple, even leading to divorce, mainly due to the constant stress due to the condition. According to the data, none of the parents, except one father who also suffered from DM type 1, did not have fully accepted the diagnosis of DM in the child. Mothers tended to describe their feelings to friends and family (not necessarily their husbands/spouses). Both mothers and fathers experienced anger and guilt, while their experiences resembled the characteristics of chronic sadness [17].
It is a fact, therefore, that the parents of children with DM type 1, mainly mothers, experience psychosocial distress apart [18, 19], and most parents may experience symptoms of anxiety and depression after the initial diagnosis, a phenomenon that is stronger in mothers [20]. This fact is something that is very likely to affect the psychosocial adjustment of children. Thus, the children with type 1 DM and their mothers cope high risk of developing depressive symptoms. It is a fact that depression in mothers can contribute to depressive symptoms in children through the creation of a stressor family environment [21].
4.3 Taking action by parents after the diagnosis of diabetes mellitus of their child
According to parents’ reports, only when the symptoms of DM worsened parents felt the need to take action [8]. The speed of events put parents out of control and some likened their experience to that which one has when one is on a roller coaster ride. Twelve months after diagnosis, many parents continued to be aware of the losses of their healthy child, control, freedom, spontaneity, and trust in their ability to protect their children from harm and a sense of security in their world. Hexaco-bathed to consider some changes that were caused by the diagnosis irritating and disturbing. All the parents described that feelings such as distress and guilt resurfaced after crisis events or at times when the children’s DM was coming to the fore. The parents were properly informed of the risk of complications in the child’s later life. Some parents expected their lives to be affected by the diagnosis for a long time, and many associated their emotional reactions with feelings of sadness. Thus, the diagnosis intruded emotionally and practically into parents’ lives, making them reconsider their conclusions about the world [8].
In the same study, it was shown that parents, while initially can resist the changes resulting from the diagnosis, along the way tried to give meaning to what was presented. They were rebuilding and accepting a new model of the world to include they go to this DM of their child. The first trend of parents was to identify a cause or to blame someone. But they were beginning to blame themselves, wondering what they could have done otherwise to catch up with DM [8].
It is noticeable that the findings of the above research cast doubt on whether parents of children with DM ever fully accept the diagnosis. Even a year after the diagnosis their feelings would rise again to the surface, when certain events emphasized that their children are actually different in some cases, causing doubts about the chronicity and unpredictability of DM. It also seemed like they were constantly needing to revise their world to meet the challenges of views on the care of newly diagnosed children.
