Every child is different in the way that they respond and cope with the diagnosis of a chronic medical illness. However, there are some commonalities on the way that children of similar ages cope.
Infants and Toddlers
Infants and toddlers are particularly sensitive to separating from their parents. Therefore, our main goal during medical treatment is to minimize periods of separation. The psychosocial team supports parents’ ability to stay with their child during procedures and encourage the parents’ involvement in comforting the child through procedures. Toddlers may express fear of medical procedures by clinging to their parent or having a temper tantrum. The psychosocial team works with the child and parent to reduce the child’s fear by making the medical experience less threatening through medical play and encouraging time in the CCFK playroom. Adherence to medical regimens can be a challenge to the parent of an infant or toddler. Creative ways to give medication are taught by all members on staff including the Child Life staff and nurses.
Preschoolers are similar to infants and toddlers in that they are also sensitive to prolonged separation from their parents. They are also often imaginative and creative, and they are learning the difference between reality and fantasy. These characteristics of their social development are important to understand their experience in the medical setting. A preschooler’s imagination can even cause them to believe that they are being punished or at fault for the diagnosis. It’s important to explain in simple and honest language both the illness and treatment. Preschool children interpret language literally, and therefore, it is also important to use concrete terms. The psychosocial team can help provide parents with the language to use when having these conversations or help facilitate these conversations.
Preschool children have worked hard to gain independence so they may fear a loss of control. It’s important to maintain rules and boundaries but give choices when possible to help them maintain independence. The medical and psychosocial teams can help provide the child with choices within the medical setting. Since preschool children are particularly sensitive to fear of pain and bodily harm, the Child Life Specialists use medical routines to reduce anxiety.
Kids in school may express feeling upset because of the interruption that treatment can have on classes, friends and activities. School-age children are also sensitive to separating from their parents during medical procedures and this age group is at risk for becoming overly dependent on their parents. If patients express fear, the psychosocial team helps them cope by using medical play, distraction and engaging them child in the CCFK’s child-friendly environment. There may be misconceptions about the diagnosis and treatment so it’s important to use age-appropriate language to clarify that the patient did not cause the illness.
The CCFK focuses on ensuring that children continue to develop academically and socially by encouraging attendance at school when possible. However, at times, treatment may cause frequent absences and impact the child’s educational and social development. Project SOAR (School Re-entry & Ongoing Academic Resources) is pivotal to addressing these issues. The Project SOAR team eases the transition back to school, helps parents navigate the education system, and monitors the child’s academic and social progress during and after treatment.
Concerns expressed by adolescents include the impact that treatment has on their ability to engage in their normal routines and activities, increased dependence on their parents and questioning their mortality. While most adolescents understand the implications of the disease and treatment, some may deny the seriousness of the diagnosis and believe they are invincible causing poor compliance and risk-taking behavior. Other concerns adolescents frequently express include the impact treatment will have on their physical appearance including hair loss and weight gain or loss. CCFK offers individualized support as well as a group that offers socialization opportunities for teens to share concerns about similar medical conditions.
Regardless of your child’s age at diagnosis, it’s important to remember that most children’s emotions reflect those expressed by their parents. Even very young children learn to respond to situations by watching their parents’ body language, tone of voice and emotions, and often times respond in a similar way.