Children with chronic illnesses face different difficulties in terms of both social life and physical conditions. Chronic illness children and their parents struggle in several areas. Here are some basic ways to understand them and deal with the emotional side of chronic illness.
Living with chronic illness
It should be kept in mind from the outset that some children with chronic illnesses may develop anxiety or depression. However, thanks to the correct handling of temperament, previous illness history, family’s cultural status and many other factors, children can easily cope with the illness and be emotionally strengthened.
The best thing you can do to keep your child’s mood in childhood or adolescence positive is to treat him as a “whole person”. This makes it easier for you to encourage them to develop a range of coping strategies. Thanks to these strategies, you can empower him to adapt mentally to the burdens of his chronic illness.
Effects of initial diagnosis
Diagnosing a chronic or long-term illness will have a huge impact on a child or teenager. Especially the first hospitalization, especially if it is sudden, can have a traumatic effect on the child. Dealing with the symptoms of the disease, obtaining medicines, visiting many more doctors than other people, and having tests and tests frequently takes a big place in the lives of people with chronic diseases. Especially during adolescence, your child will have the trouble of trying to understand who he is and what he likes, as well as dealing with various disease procedures. As a developmental period, especially adolescence is a period when he needs to spend most of his time with his friends.
In early childhood and childhood, games and activities they need to get energized come to the fore. Chronic diseases bring along some challenges that require both time and energy. The child may be deprived of the needs appropriate to his developmental period, for example hobbies or time spent with friends. This inevitably becomes a source of stress on your child. Realizing that they have chronic conditions can affect many of their daily routines, especially for children of the age when self-perception develops.
It is important to take a holistic view of the condition of the child with chronic illness and to help them manage the effects of chronic illness from all aspects of physical, emotional, behavioral and social aspects. Even if you do not have the opportunity to address different issues due to hospital visits and many illness-related situations, it is better to start somewhere to work on the child’s emotional world than not at all. It is important to take care of your child’s psychological state and to get professional help in the field of mental health in terms of managing the effects.
The family system should also be evaluated
When your child is diagnosed with a chronic disease, this diagnosis causes major changes in the family’s life. Chronic conditions that occur later affect the child more than congenital diseases. It should be kept in mind that not only the child but also the other members of the family will be affected by the chronic disease. At the time the disease is first diagnosed, individuals may experience shock, anger, or denial. The status of the husband-wife relationship is also very determinant in how the situation is managed. In case of failure, it may be helpful to seek counseling for the family.
One of the attitudes that can increase anxiety about the disease in the child is to hide the diagnosis from him. The child will combine his imagination with what he hears in the home spoken. Not providing any information will increase their anxiety even more. Providing regular information in plain language will alleviate their anxiety and ease the adjustment process.
When children need to be hospitalized; It develops different responses according to age, mental development level, whether the disease is acute or chronic, the pain it will experience, processes and limitations. Previous hospital experiences, the level of anxiety and stress of family members, the relationship between the child and family members, and whether the child is prepared for hospitalization honestly and clearly affects the child in different ways. It is important to have individuals that the child trusts and to have a favorite toy, especially at the age of 1-3. A calm and determined attitude should be displayed, all rules should not be loosened collectively, discipline should be applied with compassion.
Track unresponsiveness along with reactions
If your child has experienced hospitalization, it could be described as a traumatic process for him. Admission to the hospital is a frightening, disturbing, and unpleasant experience. In an unfamiliar environment, he is exposed to various painful and painful practices by people he does not know. Leaving family, friends, the environment he is used to, his belongings and toys is a cause of mourning for him. In a study, it was found that 83% of children under the age of 6, namely preschool children, had anxiety due to hospitalization. Children reveal the situation they experience with their emotions, body functions, behaviors and performances. It may develop different reactions depending on age. The unresponsive child should not be considered to be affected by the disease.
When chronic illness occurs, that is, when the diagnosis is made, it is important not to make children feel guilty and embarrassed, especially at a young age. “You did not eat your meals, look, you got sick,” implying that the disease developed in children aged 2-6 because of something wrong with him. Particular care should be taken not to use expressions such as. From the neonatal period to the age of 3, children reflect the feelings of their parents, especially the caregiver – mostly the mother. It is supportive for the little child that the mother has a peaceful, calm and reassuring approach, makes eye contact frequently and does not make an anxious expression. In this regard, it should not be forgotten that the mother needs physical and mental support.
Children in the 7-11 age group are old enough to understand the causes, course and treatment methods of the disease logically. It may be helpful to involve them in the process, asking the questions they are curious about and establishing connections with the doctor. The temperaments of the children also affect the periods of getting to know the disease and adapting to the disease. Temperament should be taken into consideration, adapted to the emotional predisposition of the child, and patience.
Children can show various defense mechanisms in the face of events that are very difficult for them emotionally and physically. They may exhibit behaviors that deny the disease and related issues, act angry, or, conversely, appear unaffected. He may use illness as an excuse – even if he is not very interested in some cases – in matters such as school success, or, on the contrary, he can focus heavily on working on a topic that is beneficial to society, and lean towards creative work. All of these are considered as disease coping mechanisms.
Talking about feelings is important!
There may be times when some symptoms of your child’s chronic illness relapse or have a more stable course. When a relatively less intense time comes, you can prepare a “tool kit” that will stay at hand until the next busy period. To do this, first make a list of things that are good for your child. Remember previous times when the pain was getting worse, or when he felt emotionally bored, helpless, angry. Think about what’s good for him during these times. These are physical, behavioral, or “I’ve done this before. There may be coping thoughts such as “I can do it now.” Talking about these with your child also gives them a message that you will tackle them together. It is helpful to choose relatively quiet times when you will not be disturbed to do this kind of sharing with your child.
As a parent, it’s normal to feel tired often. While you are making a list of things that are good for your child, it is a good idea to make such an assessment for yourself. To make this assessment, you can take notes by yourself, appreciate yourself, give yourself a sense of the whole effort by offering small rituals and rewards. Especially in diseases where uncertainties are intense, living in anticipation creates congestion in one’s emotional world. From time to time, it is useful to take a special time to remember what you have accomplished with this disease, what disappointments you have experienced until that day, and to work internally on them. When the emotions are passed without awareness, all the intense emotions that are suppressed can come out with intense emotions such as anger at a time. As a parent, be sure to show yourself compassion and go over all the help options you can get. Children need to see that you are an adult who accepts and supports them in every way. They should know that you are doing your best and feel safe. If you cannot cope with the situation, seek professional support and contact your healthcare provider.
As your child gets older and gets more used to living with a chronic condition, the way you parent and support your child will change. Typically, young children need both emotional and physical care more. When your child reaches puberty, he or she must learn to manage their health condition on their own. Adolescent children also need autonomy. For this reason, it is beneficial for his emotional development to support his need for autonomy and to offer him the opportunity to follow some tasks himself. Treating him like a small child and taking things he can do on his own can even lead to different situations, such as clinging to a disease. It is helpful to support their skills. This will be one of the first steps in making your chronic illness a part of your life rather than a burden as you move into adulthood. At the same time, supporting peer relationships prevents the stress that it will create due to withdrawal from the social environment.
Compiled and translated by: Senem Tahmaz
References: “The Impact of Illness and Hospitalization on Child and Family” Prof. Dr. Güler Cimete (2009) Retrieved from: http://www.istanbulsaglik.gov.tr/w/sb/egt/pdf/hastalik_etkisi.pdf
“Parenting a child with chronic condition” Şuradan alındı: https://www.aboutkidshealth.ca/mentalhealth
“Investigation of psychosocial symptoms in hospitalized children in terms of some variables” G. Üstün, E.Erşan, M.Kelleci, H.Turgut. (2014) Retrieved from: https://dergipark.org.tr/tr/download/article-file/48064