Children with Chronic Illness

Approximately 20% of school-age children have a chronic illness, making counseling increasingly important due to the impact on the child’s family relationships, school functioning, and peer interactions. Certain chronic illnesses have a greater effect than others on the psychosocial and educational aspects of a child’s life, depending on symptom severity and the nature of the treatment. Numerous counseling interventions address the unique needs of these children, particularly regarding school reintegration. This entry provides an overview of common childhood chronic illnesses, discusses psychosocial and educational implications, and describes effective counseling interventions used with this population.

Common Childhood Chronic Illnesses

Asthma

Asthma is currently the most common childhood illness, affecting approximately 5 million children under the age of 18 in the United States. Asthma is a respiratory condition characterized by an obstruction of the airway; it can result in wheezing, coughing, shortness of breath, chest tightness, and fatigue. Attacks may be triggered by allergens, environmental conditions, exercise, or stress. The severity and timing of asthma attacks vary. They can result in limitations on physical activity and increased frequency of medical visits. Treatment varies depending on severity and may consist of self-administered inhalers, nebulizer treatments, or hospitalization. Side effects of these medications can include hyperactivity, anxiety and depression, drowsiness, and impairment in memory and attention.

Diabetes

Diabetes mellitus (DM) is an autoimmune disease affecting metabolism. There are two different types—type 1, which is insulin-dependent or juvenile diabetes, and type 2. Type 1 DM affects approximately 1 in 400 to 600 children and results in permanent insulin deficiency. Treatment for type 1 DM involves regular blood glucose monitoring and daily self-administered insulin injections or the use of an insulin pump.

Type 2 DM is found in 10% to 20% of newly diagnosed cases of juvenile DM. The recent increase in the incidence of childhood obesity is likely responsible for recent increases in type 2 diagnoses. Type 2 DM is characterized by insulin resistance, resulting in chronically high levels of insulin in the body. Treatment of type 2 DM involves strict management of diet and exercise and the administration of oral medication or insulin injections. Based on the nature of the disease and required treatments, diabetes has been found to affect the learning process, mood and attention, and social interactions.

Juvenile Rheumatoid Arthritis

Juvenile rheumatoid arthritis (JRA) is an autoimmune condition affecting approximately 200,000 children in the United States under the age of 18. There are three subtypes of JRA: pauciarticular (least severe), polyarticular, and systemic (most severe). Symptoms include stiff and swollen joints, limited mobility, pain, and occasional fevers and rash. Severe JRA can impact bodily organs as well. Treatment for JRA includes medication, limiting activity, and participating in therapeutic exercise programs. Pain and stiffness associated with JRA can affect writing, phys-ical activity, and school attendance.

Cancer

Cancer is the uncontrolled spreading of abnormal cells that can affect various parts of the body. The most common childhood cancers are leukemia (blood cancer), lymphomas (cancers of the lymphatic system), and brain tumors. Because cancer treatments are very intense, both the disease and treatment can have severe impacts. Treatments for cancer often include some combination of surgery, chemotherapy, radiation, bone marrow transplants, and immunosuppressants. Symptoms of the disease and treatment may include nausea and vomiting, fatigue, muscle weakness, and significant changes in appearance (e.g., facial swelling, hair loss, temporary weight gain or loss). Particular attention should be paid to social adjustment, peer relationships, and the emotional well-being of the child.

Low-incidence Conditions

Several less common conditions also affect children in their family, social, and educational environments. Low-incidence conditions include cystic fibrosis, epilepsy/seizures, stress-related conditions (headaches, stomach pain), enuresis, encopresis, gastrointestinal disorders, blood disorders (e.g., hemophilia), migraines, heart conditions, and infectious diseases.

Psychosocial and Educational Implications

Family implications

Caring for and raising a child with a chronic illness can lead to innumerable burdens on the parent or primary caregiver. Parents must become knowledgeable about the condition, serve as the principal informant to medical professionals, and deal with the financial consequences of the illness. Compared to parents without an ill child, these parents report higher levels of role strain, or stressors associated with the parenting role, as well as frustration and conflict about division of labor and expectations. Parents may also demonstrate increased levels of anxiety and over protectiveness, they may have lowered expectations for their ill child, and they may fail to provide boundaries or consistent discipline for the child.

Caring for a chronically ill child may also result in work-related and marital stress as well as compromised personal self-care. Such stressors can often lead to marital separation and divorce. Gender differences have been noted in how coping relates to marital adjustment. Women demonstrate a negative association between marital adjustment and the tendency to use avoidance strategies to deal with their child’s illness, while men indicate that marital satisfaction is associated with positive interpretation and growth. Women, who have a tendency to use avoidance strategies, often experience a strain on their marriages, while for men, interpreting the situation as positively as possible leads to greater marital satisfaction.

Childhood chronic illnesses can also affect siblings. Research suggests that siblings experience increased psychological distress, most frequently internalizing disorders. Siblings may feel neglected due to increased attention toward the ill child, thereby leading to feelings of distress and isolation. Adaptive functioning of siblings has been linked to family cohesion, social support, and maternal mood or psychological distress. Furthermore, sibling adjustment is influenced by individual factors such as age at diagnosis, gender, birth order, and illness characteristics.

Overall, the most prevalent predictors of well-being in families with a chronically ill child include flexibility, integration into a supportive social network, balancing the demands of the illness and family needs, clear boundaries, effective communication, active coping, and the encouragement of development and growth within the family.

Social implications

Several characteristics of diseases and their treatments have been shown to affect children’s relationships with peers. Peers are a critical component of the socialization process and heavily influence the behavior of children. Limitations on physical activity resulting from pain, fatigue, or other physical restrictions can limit participation in peer-oriented activities, thus resulting in fewer opportunities to socialize. For instance, a child with asthma may not take part in sports or games that are physically intense. Likewise, changes in physical appearance from the illness can result in negative self-perceptions and negative reactions from peers. A child who has lost his or her hair from chemotherapy may be teased or ostracized by other children. Children with cognitive impairments (e.g., problems with intelligence, memory, or attention) also may be more prone to peer difficulties, which may be attributed to their inability to both understand social information and express social behavior. Likewise, visible differences resulting from illness may lead to increased levels of teasing and bullying.

Educational implications

Making school accommodations for a chronically ill child is necessary to prevent social, emotional, and academic problems. Many illnesses result in increased absences from school, thereby causing a child to fall behind in schoolwork. Certain illnesses may result in prolonged periods of school absence or hospitalization. Reintegration into the school system may result in additional concerns such as the fear of falling behind academically (e.g., having to repeat a grade), worrying about what others may think or say, and concern over having missed important school activities.

Some illnesses require a child to make several daily visits to the school nurse to monitor or administer medication or address symptoms associated with the illness. More nurse visits can lead to feelings of being different, more responsibility for the child, and potentially negative attention from peers.

Effective Counseling Interventions

Family-Based interventions

Several pediatric family interventions focus primarily on psychoeducation for parents. More specifically, some of these interventions for children with chronic illness involve working with the family to increase treatment adherence or to address family trauma. Because adherence regimens can create additional conflict within the family system, interventions addressing family conflict are also beneficial.

Social and Behavioral interventions

Cognitive-behavioral therapy (CBT) has been found to be effective for helping children cope with the additional stressors of having a chronic illness. CBT addresses maladaptive thinking patterns and behaviors and aims to replace them with healthier coping strategies. Primary goals with this technique include changing thinking and behavior patterns to reflect a more effective approach to managing stress and solving problems.

Stress management involves learning to relax in order to decrease tension and changing the way the child thinks about the illness. Various methods of relaxation include progressive muscle relaxation, passive relaxation, and guided imagery. The aim of relaxation training is to create a physiological state that is incompatible with the anxious physical and emotional reactions. Relaxation, along with distraction, is often used to manage the stress of painful medical procedures such as shots or blood draws.

Because children may be teased by peers as a result of the illness, it is important to help the ill child enhance social skills. Teaching children strategies and behaviors to manage teasing or bullying is critical. Because illnesses can have such a profound impact on the child’s social development and relationship with peers, it is essential to address peer relationships, especially at school.

Another CBT method involves increasing approach-coping skills. Approach coping has been shown to be more effective than other methods, such as avoidant coping. While at times avoidance coping might be desirable to the child, CBT interventions designed to help the child learn to actively approach stressors and actively solve problems have been shown by research to be more effective. Approach strategies include the use of problem-solving techniques to gain mastery over coping. For example, a child with diabetes is taught to actively manage dietary intake and insulin treatments in the school environment instead of avoiding these undesirable activities. This method also includes encouraging the child to identify and discuss emotional stressors associated with the illness.

Educational interventions (Systems Approach)

Because children spend a majority of their time in school, accommodations within this setting are necessary. Schools address the unique needs of children by developing a 504 plan or an Individualized Education Plan (IEP). A child with a chronic illness qualifies for a 504 plan when the illness interferes with daily functioning in the educational environment but the child has not been formally identified for special education services. An IEP is developed for children diagnosed with a learning disability, communication impairment, or emotional disturbance when the child’s needs warrant special education services. Both plans outline specific objectives and modifications to implement in the schools to best meet the educational needs of the child. It is necessary to become familiar with the specific goals and objectives of both IEPs and 504 plans to advocate for the child within the school setting.

Integration/Reintegration

There are many challenges facing a child returning to school. For example, children may have to cope with changes in physical appearance, daily administration of medication, physical effects of the illness (e.g., fatigue), social isolation following prolonged school absences, and making up missed work. Accommodations can be made to decrease the stress of returning to school. Some examples include shortening the school day initially, helping with note taking, using a tutor, or using special equipment to assist with learning. Returning to a routine quickly and helping the child maintain normal activities is very important. Facilitating good communication among the school, healthcare professionals, student, and family is critical.

References:

  1. Clay, D. L. (2004). Helping schoolchildren with chronic health conditions: A practical guide. New York: Guilford Press.
  2. Roberts, M. C. (Ed.). (2003). Handbook of pediatric psychology. New York: Guilford Press.
  3. Spirito, A., & Kazak, A. E. (Eds.). (2006). Effective and emerging treatments in pediatric psychology. New York: Oxford University Press.

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