The child as a patient

Factors influencing a child's understanding of their illness are: age, symptoms, level of dependence on treatment such as hospitalization, rehabilitation, diet, restrictions and play and social restrictions.

Children conceptualize their illness as follows:

Under 4 years old: During initial hospital visits, a child may believe that if they cannot see their mother, she will not return, they fear separation and abandonment, it´s difficult for them to distinguish between reality and fantasy., If they hear the word “hematoma,” they may imagine what it is and what it could cause.

Ages 4 to 6: At this stage, children still do not know what illness is, they often fear physical pain or medical team and may experience episodes of crying, anger, and desperation due to hospital stays, they may resist medical procedures, they tolerate more the separation from their parents, they might interpret illness as a punishment for having done something wrong.

Ages 6 to 10: Children tend to believe all illnesses are the same, they are capable of describing symptoms, causes, and consequences. Separation from their peer group becomes a source of concern. They perceive illness as an external cause but one that is localized in the body, and they worry about recovery. Hospitalization is difficult to adapt to, and they are emotionally vulnerable to the condition or death of other patients. Feelings of loneliness may emerge, along with symptoms of anxiety and depression.

Ages 10 to 13: Children begin to differentiate types of illnesses and develop an abstract understanding of disease. This includes recognizing visible symptoms, isolated symptoms, the healing process, and the role of medication, Illness may be interpreted as either an internal aggression (symptoms) or an external aggression (family or medical team imposing diets, painful treatments and hospitalization). If the child accepts the illness, they are likely to engage in treatment. If they actively reject it, they may become oppositional or aggressive toward the medical team and treatment, viewing it as a threat to their independence they had achieved. In passive rejection they may become indifferent.

It is important to remember that the core support network in a child’s life are: their parents (including their parents´partners), siblings, grandparents, aunts, uncles, cousins, friends, classmates, teachers, neighbors, pets.

Children have the right to be hospitalized only when home care is not feasible. During hospitalization, they must be accompanied, and informed in ways appropriate to their age, mental development, and emotional state, they have the right to avoid unnecessary treatments, to be cared for by trained professionals, to have access to furniture and equipment suited to their care needs. Additionally, they have the right to receive formal education and have access to recreational spaces.

It is recommended that family and friends avoid compensating or overprotecting the child, as this can lead to consequences such as: feelings of insecurity, loss of autonomy over their body and activities, regressive behaviors (e.g. acting younger than their age), sleep disturbances, appetite loss, isolation, low frustration tolerance, difficulty in social relationships or reintegration into their environment, difficulty solving problems.

Care must be taken in how the child is encouraged to participate in their treatment, they may develop fear of abandonment due to feeling conditioned (by not accepting a procedure or eating).

At COINCIDIR, we care for children under the following circumstances:

-Children with serious conditions undergoing curative treatment, which may succeed or fail.

-Children with illnesses that carry the risk of premature death, but whose lives may be extended through intensive treatment.

-Children with irreversible but non-progressive conditions, which may deteriorate due to complications and lead to early death.

-Children facing progressive illnesses for which only palliative care is provided, due to inevitable death.

We provide support throughout the course of illness and treatment to encourage the individual's participation in adherence, decision-making, and adaptation to their environment and express their concerns, emotions, and thoughts about death, conveying that these are valid and understandable, this fosters self-confidence and emotional expression, regarding end-of-life concerns and ideas.

Psychological intervention helps prevent behaviors with secondary gains, fear of abandonment, loss of identity, and regressive behaviors (acting as if they are younger), sleep disturbances, refusal to eat, and isolation.

Following experiences of illness, either their own or that of others, children begin to question about life and death: What does it mean to die? Will I die someday? Will my parents die too? What happens to the body? They conceptualize death in the following ways:

Ages 1–3: Death is perceived as a departure. The primary fear is abandonment or separation from parents or primary caregivers. Death may be interpreted as a violent event. They need a bond for security and affection.

Age 4: Death is like falling asleep. Children may show separation anxiety and irritability.

Ages 5–6: Death is still seen as sleep-like, it is not final.

Ages 7–9: Children fear being left alone and create imaginative narratives or fantasies about life after death.

Age 10: Death is recognized as irreversible.

Children begin to approach the concept of death when they learn about the loss of family members or friends. In such situations, it is essential to speak truthfully with them to help the child feel included. Otherwise, this may lead to feelings of anxiety, which can manifest or not in psychological or physical symptoms.

It is recommended to introduce children to the concept of loss through everyday situations:

1. Initiate conversations before the child is emotionally involved in a grieving situation, (such as when passing by a cemetery) or using analogies (a dead flower or pet).

2. Avoid linking misbehavior or conflict to death, such as saying (“your bad behavior is going to kill me”)

3. Provide explanations that are age-appropriate and aligned with the child’s emotional capacity.

4. Use the word “death” directly, rather than euphemisms like “a journey” or “sleep,” which can lead to sleep disturbances or misunderstandings.

5. Do not hide emotional pain after a loss. it is important to express feelings naturally, making them valid and legitimate.

6. Allow the child to talk about the person who died.

7. If the family is religious, share the child the peace of mind that spirituality can offer.

8. Reinforce the irreversibility of death to prevent false expectations of the person returning.

9. Inform the child’s school about the loss.

10. If the child shows separation anxiety, reassure them with both words and actions (share your plans and when you’ll return).

11. Clarify family roles so the child doesn’t feel the need to take on the responsibilities of the deceased.

12. Monitor behavioral changes, which may include: denial, physical complaints, hostility toward the deceased or others, adopt the deceased’s mannerisms, anxiety, panic, or guilt.