Today, in the evaluation of the diseases of children and adolescents, not only the biological dimension but also the psychological and social dimensions are handled, and the disease is approached from a biopsychosocial perspective and both biological, psychological and social supports are tried to be given. Because today, it is better known that children and adolescents experience mental, social and/or behavioral problems during their illness. Not forgetting the biopsychosocial point of view in sick children and adolescents will greatly contribute to a more comfortable diagnosis and treatment process.
In this section, it is aimed to include some questions about how children and adolescents with acute or chronic diseases react psychologically and behaviorally, what plays a role in these reactions, and some questions that families with children and adolescents with diseases may want to learn:
AT WHAT AGE, HOW DO CHILDREN AND ADOLESCENTS REACT MOST COMMONLY?
0-6 age group
-Separation anxiety (experiencing intense distress, crying when separated from mother or caregiver close people); It is a common situation especially in the first 3 years of age.
-Regression (regression, infantilization): It is the state of not being able to perform most of the skills that the child has gained at his/her age. When you are toilet trained, starting to go under again, asking your mother to feed you when you can eat by yourself, baby talk, thumb sucking.
-Changes in eating and sleeping patterns: Not being able to sleep at the usual sleep time, waking up frequently at night, having nightmares, decreased appetite, being picky about food.
-Fear of medical procedures performed by the healthcare team. Such as needle application, drug administration.
-Introversion.
6-11 years (school period)
-School problems: such as failure in classes, absenteeism, being mocked by peers, belittled, ostracized, stigmatized.
-Fear and anxieties: such as not being able to sleep alone, fear of the dark, fear of death, anxiety of losing parents.
– Boredom, feelings of loneliness.
-There may be problems such as sleeping and eating problems.
Adolescence period
-Adolescence period; As adolescents are very busy with their appearance, they may experience problems due to body shape changes (such as skin color changes that may develop due to the current disease, accidental deficiency in the arms and legs, gait disorders, etc.).
-Reconnecting with the healthcare team and parents at a time when they need to gain independence can make the adolescent uneasy.
-They may have problems at school.
-Sometimes they may become depressed due to their illness, attempt suicide
WHY DIFFERENT MENTAL AND BEHAVIORAL REACTIONS ARE OBSERVED IN CHILDREN’S AND ADOLESCENTS’ DISEASES?
The psychological and behavioral responses of children and adolescents to illness depend on many factors:
1. FACTORS RELATED TO THE CHILD
1.a. Age of the child,
1.b.The characteristics of the psychological and social developmental stages of the child,
1.c.The child’s temperament,
1.d.Defense mechanisms used by children against diseases.
2. FACTORS RELATED TO THE DISEASE
2.a. Formation of the disease,
2.b. Course of the disease,
2.c. Type of treatment and hospitalizations,
2.d. Period of illness.
3.FAMILY-RELATED FACTORS
4.ENVIRONMENTAL FACTORS
1.CHILD-RELATED FACTORS
1.a.Child’s age
Children’s perception of events varies according to age and cognitive development levels. For example; Children aged 2-7 rely on their own experience and act on them. Their ability to generalize the situation is weak and they cannot think rationally in the face of the disease. Since the autonomy of the child who is sick or hospitalized at the age of 2-7 is controlled to various degrees (eating, dressing, playing style,…), a sense of uselessness and helplessness develops. In addition, children at this age think that illness is a punishment given to them for wrong behavior. For this reason, care should be taken not to be accusatory while explaining to children during this period. It should be emphasized that his illness was not his fault.
While explaining to children, it is necessary to pay attention to the child’s beliefs about the disease or medical interventions, as well as the characteristics of their developmental period. For example; Saying ‘don’t be afraid, you will feel a little pain’ to a child who believes that when blood is taken from himself, all the blood will be taken and the blood will run out, cannot comfort the child.
In the following years (7-11 years), logical thinking develops in the face of diseases. In other words, if sufficient and correct explanation is given by the relevant specialist doctor about the disease, they will better understand the cause of the disease and the necessity of the treatment method.
While explaining the disease to the child, pictures, photographs, stories, and other patients can be used as tools depending on their age and level of understanding. It should be done by choosing appropriate words with an empathetic approach (making us feel that we understand his feelings and thoughts by putting ourselves in his place) in a way that he can understand.
1.b.Characteristics of the psychological and social developmental stages of the child
Babies in the newborn period reflect the feelings of their mothers (caregivers). If the mother is peaceful, the baby may be peaceful, and if the mother is restless, the baby may be restless. Therefore, if the mother has a mental problem (such as postpartum depression), support should be given to the mother first.
It is very important for children aged 1-3 to be in an environment where they can trust. They are particularly sensitive to separations and changes in the environment they are used to. They are afraid of leaving the family, hospitalization, medical procedures.
The disease, which occurs at the age of 3-6 years, may impair the ability of children to model (identify) their parents and the socialization process. Children’s sense of entrepreneurship may be damaged, and accordingly, they may become passive and more dependent on their parents, fearful and anxious.
Illnesses in school period can lead to success and socialization problems.
Illness in adolescents can lead to loss of independence and disruption of future plans, changes in physical appearance (for example, hair loss, weight changes, darkening in skin color), problems in peer relationships and school, feelings of isolation, and feelings of hopelessness and inadequacy. .
1.c. Child’s temperament
Temperament; It is an innate emotional predisposition in children. Children whose temperament is evaluated are grouped as easy children (having the ability to adapt easily to new situations), difficult children (having difficulty in accepting the disease and treatment), and children who warm up slowly (who can adapt to the new situation in time).
1.d.Defense mechanisms used by children against diseases
Defense mechanisms; It is very important in the adaptation of the person to the environment and personality development. All defense mechanisms develop unconsciously (children and adolescents do not do this on purpose) and are widely used in children and adolescents. Some of the defense mechanisms are also found in healthy children, adolescents and adults. Here, the ones encountered in children and adolescents with the disease will be mentioned;
Regression (regression, infantilisation); It is the child’s loss of the acquired abilities and the beginning of showing the characteristics in the backward period of development. Every illness and hospitalization causes regression. Because sick children are put to bed, fed, washed and dressed.
Denial (denial); It is children’s ignoring and denial of their illness. This defense mechanism makes it difficult to comply with treatment.
Mirroring; children’s reflection of their feelings and thoughts about the disease to others. For example; may project their anger towards the illness on their friend, sibling, or parent.
Reasoning (plausible excuses); is that children can find a logical excuse for what they cannot do because of their illness. For example; a child who cannot study due to his illness, attributes this to the inadequacy of the education he received.
Isolation (the suppression of the emotional side of events); When children with the disease use this defense mechanism, they do not show their emotions such as anxiety, sadness, hope and anger. It is thought that they accept the disease very easily from the environment.
Exaltation; children’s health conditions allow them to use their energies for creative and constructive actions that are accepted in the society. For example; educational, artistic, scientific, sports activities.
2. FACTORS RELATED TO THE DISEASE
2.a. Formation of the disease
Congenital or acquired disease in the child can lead to different psychological and social situations. Going to the doctor and getting treatment and living with the disease become a part of their lives in children with the disease from birth. Children who experience normal developmental stages, on the other hand, have a harder time adapting to the treatment team, the treatment method and the restrictions brought by the disease when they have the disease. In both cases, although mental problems such as depression, adjustment disorders, post-traumatic stress disorder, various anxiety disorders, and conduct disorder are experienced in children, it can generally progress more frequently or more severely in those who have the disease.
2.b. Course of the disease
The acute (sudden onset and short-term) and chronic nature of the disease are also important factors for children’s mental health. chronic diseases; These are diseases that can leave permanent disability and require care and supervision for a long time. Various chronic diseases can be seen in children (such as epilepsy, mental retardation, congenital heart diseases, autism, kidney failure, cancers, diabetes).
Children with chronic illness; They may have difficulty in being accepted by their peers. In these cases, the attitudes of parents with healthy children are also important. Because some parents do not allow their own children to play, be together and study in the same class with their sick children. Therefore, the message that the sick children should be excluded is received from the parents, who will be a model for the healthy child.
Children with chronic illness; they experience lower school success (due to reasons such as absenteeism from school, attitudes of the family, cognitive abilities being affected in some diseases).
2.c. Type of treatment and hospitalizations
Painful interventions, pain and uncertainties during the treatment process may cause distress in children.
Hospitalizations, especially in the pre-school period, have negative effects on children. Young children perceive their hospitalization as punishment because they do not fully understand the cause and effect relationship. Adapting to an environment where they undergo medical interventions, which are completely different from the home environment they trust and often painful, and separation from their parents are important sources of stress for young children. One of the defense mechanisms that we often see in the hospitalization of children is regression (infancy). Hospitalization of young children; causes their newly acquired and invaluable talents to be taken away from them. This, in turn, leads to the development of a sense of helplessness and uselessness in children.
Hospitalized adolescents may react in different ways;
1.Passive adolescents: They are compatible with the treatment team. They cannot express the worries and anxieties they experience inside.
2. Unruly adolescents: Adolescents who are non-compliant with treatment. Therefore, the treatment processes cannot go as they should.
3.Mature adolescents: Their mental strength is sufficient to understand and cope with the process.
The type of disease in hospitalized adolescents is also important. Because adolescents are extremely sensitive to their physical appearance. Diseases that create differences in their appearance can be a nuisance for adolescents of both sexes. Adolescents want to be free and independent. Therefore, they experience additional stress during their hospitalization. Because they become dependent on their parents and health personnel again. Peer relationships are also very important during adolescence. Adolescents who are hospitalized experience difficulties because they are also deprived of this. Adolescents are worried that they will regress while they are in the hospital, as they do in children, so they do not like to be put in the place of children and to be treated like children.
Despite all these evaluations, it would not be correct to say that every child and adolescent hospitalized will experience distress.
2.d. Period of the disease
Reactions in children and adolescents may change depending on the stage of the disease.
At the onset of the disease, confusion and denial are evident. Early and accurate diagnosis helps to establish trust in the patient-physician relationship. Frequent hospitalizations and intensive examinations can increase anxiety. Attitudes of those around the child are also very important in the period when the child’s illness is learned. If the child is treated much better than before, the rules that must be followed are removed, everything is said yes, and no sound is made when he should be angry, the child can easily adopt the sick identity. Of course, children and adolescents may need love and affection when they are sick. But this should never mean that the child and adolescent have different tolerance than they did before the illness. Otherwise, the recovery of the disease may take longer, and even if there is recovery, the child and adolescent may unconsciously show new symptoms of the disease due to psychogenic reasons (I can’t hold my hand, I can’t walk, my head hurts).
Treatment initiation; It can cause problems depending on the way and frequency of treatment. The treatment process is better tolerated by children if there is recovery and a return to a healthy state before the disease as a result of the treatment. If the response to the treatment takes a long time and/or there is a partial (insufficient) response to the applied treatment, it becomes more difficult to adapt to the treatment and the disease.
If the disease shows a recurrent course, distrust towards the treatment team, feelings of helplessness and hopelessness, depression and anxiety may be seen more frequently in children and adolescents.
In slowly progressing diseases, the rate of progression is important in terms of adaptation to the disease and psychosocial.
In the terminal period of the disease, when we reached the fatal stage despite all medical interventions; The quality of life of children and adolescents should be prioritized, unnecessary examinations and interventions should be avoided.
3.FAMILY RELATED FACTORS
Type of family,
Family functionality,
Marriage relations,
Parenting quality of parents ,
Parent’s personality traits,
Family’s reaction to illness,
Family members’ level of exposure to illness,
Care and psychosocial support given to sick children,
Sibling status,
Parent’s education level,
Cultural characteristics of the family,
The first stage experienced in the family when learning that the child is sick; ‘shock and surprise’. The most common defense mechanism to be used in this period is denial (thinking that there is no disease, that a wrong diagnosis has been made). Then comes the ‘phase of guilt, anger and resentment’. A significant part of the anger seen in this stage is reflected to the treatment team. Why me? Questions are asked. After this period, there is a sad period (sometimes depression may develop) and then the final stage of acceptance comes. However, these stages may not be completed in every child, adolescent and parent. The family may stay in one phase, for example, in the denial phase. This can lead to significant delays in the treatment process.
Siblings experience similar stress as the sick child, especially in adjusting to the illness. Since siblings are the most neglected individuals, especially during the intense period of the disease, parents also have important responsibilities regarding siblings.
4. ENVIRONMENTAL FACTORS
Treatment team,
School environment,
Close relatives,
Peers,
Associations and organizations related to the disease
The relationship established between the health care team and the child is extremely important in the child’s self-confidence, trust in the treatment team, having the right information, not feeling the feelings of hopelessness and helplessness against the disease.
School for children; It is an important environment both academically and socially. Expanding hospital school projects for hospitalized children is important for their psychosocial and academic development.
Support of close relatives; It is very important both in child care and in providing psychosocial support to parents in our country.
During adolescence; Peer relationships are very important for normal mental development. For this reason, a positive friendship relationship will positively affect the compliance with the treatment and the mental health of the young person.
AT WHAT AGE DOES THE CONCEPT OF DEATH DEVELOP IN CHILDREN?
Children under the age of 7 perceive death as reversible. In children aged 9 and over, the concept of death has developed at the adult level and has been understood to be irreversible. However, the concept of death in children with a terminal illness may develop faster and earlier due to psychological stress and experiences (threat of death, death of a friend from a similar illness,…) during the diagnosis and treatment of the disease.
HOW IS DEATH TRANSFERRED TO CHILDREN?
The event of death should be explained to the child, taking into account the level of mental and spiritual maturation.
Preschool children (under 4-5 years old) cannot perceive death as the end of body functions, as they do not know the human body in a biological sense. For example; A statement ‘he died because his heart stopped working’ to a child who thinks the heart is about love cannot contribute to understanding the concept of death.
Children between the ages of 4-6 begin to perceive the human body as a biological entity. For this reason, it is beneficial to provide information that explains the life cycle and body functions with biological concepts so that children can understand and cope with the phenomenon of death. In these narratives, it should be explained in an appropriate and simple way that death is a vital cycle and bodily functions cease. That is, it must be explained that a deceased person cannot breathe, eat, play, think or feel…
SHOULD A CHILD WITH THE DISEASE BE EXPLAINED?
Hiding the diagnosis from the child with the disease does not prevent fear and anxiety. Because children and adolescents try to understand how their illness is by talking with other children, by eavesdropping, by looking at the facial expressions of the people around them. In addition, when children are not allowed to express their fears, they may have more negative thoughts and experience more intense anxiety when the disease is not talked about at all. Children who hide their illness experience more confusion, loneliness, uncertainty and insecurity. Adolescents who are sick should also be informed regularly, parents should be provided to talk to each other and their children about the disease, and an environment should be prepared where they can share their feelings and thoughts. In this way, both the sick child/adolescent and the parents adapt more easily to the diagnosis and treatment.
DOES EVERY CHILD WITH A CHRONIC (CONTINUOUS) DISEASE HAVE MENTAL PROBLEMS?
The prevalence of mental disorders developing after chronic illness was found to be 10-30%. As stated above, many factors such as individual, genetic, environmental, familial, cultural… play a role in the formation of mental problems in children.
HOW SHOULD THE DISEASE IN CHILDREN BE DISCLOSED?
Disclosure should be made by the diagnosing physician, if possible to both parents. In this way, the parents’ acceptance of the disease, their anger and blame against the disease are prevented from reflecting on each other, and the concerns about the disease are shared by both parents. The explanation to be made to the child can also be made by the physician and/or parents who made the diagnosis. Because it is important that the people who make the statement are people that the child knows and trusts. Thus, the child will feel more secure during the illness. If only the parents are going to explain the disease, it is very important that the parents have enough information about the disease from the right sources before explaining. It is very important that people who tell children and adolescents about the disease do not exaggerate their emotions (fear, anxiety,…). For this reason, parents should share the disease with their children as soon as they are ready
SHOULD THE CHILD BE EXPLANATION BEFORE OPERATIONS?
Children should be prepared for surgery with their families. The characteristics of the disease, the time spent in the hospital, the operation to be performed and after it should be explained to the family. According to the understanding capacity of the child, what will be done, the operating environment (such as why doctors wear masks) should be explained to the child. In this way, children can be prevented from thinking that they will be exposed to much more frightening processes in their imaginations and that they will suffer a lot. While families take their children to the hospital; Taking toys that children like very much at home can contribute to the reduction of stress, especially in young children. Explaining to children under the age of three on the day of surgery helps to reduce stress in children.
HOW TO BE TREATED TO CHILDREN AND AGENTS DIAGNOSED WITH A CHRONIC DISEASE?
Children and adolescents should be provided with information about the disease. Restrictions on this subject or misinformation from the environment can easily lead to negative thoughts and the development of a sense of hopelessness.
After the illness is explained, children and adolescents should be provided with an environment where they can talk about the illness as long as they want and share their positive or negative feelings and thoughts. Here, parents have an important role to play. Because children or adolescents may sometimes avoid talking about the disease in order not to upset their parents.
It is very important that parents and close family circles do not support infantile attitudes and do not behave excessively emotionally. Because if the ‘sick identity sense’ is added to the existing physical illness of children and adolescents, it will not be possible to say that they will be strong enough mentally. If sick children and adolescents are protected too much, they will have more adaptation problems in every environment outside the home. Because no one will be overly tolerant and emotional towards children and adolescents as in the home environment.
Unless there is a medical necessity, children and adolescents should be able to continue their daily activities as before and be in the same environment as their peers as much as possible.
In the process of the disease, it should be reminded that besides the child and adolescent, parents can also receive psychological support when necessary, and guidance should be provided when necessary. Because having a strong parent in front of the sick child and adolescent will increase the feeling of confidence for the future.
HOW SHOULD A CHILD WITH A CHRONIC DISEASE BE TREATED AT SCHOOL?
First of all, it is important for teachers to be informed about the disease. Because sometimes teachers may be asked for medical support and it may be important to get their observations.
Teachers should treat the sick child as much as possible as they treat other children (here, of course, what children and adolescents cannot do medically should be considered). Because children and adolescents who are treated very differently and tolerantly, the effort required to adapt to the lessons and the environment decreases and they may be more excluded by their peer groups.
