Chronic health conditions (both chronic illnesses and chronic physical disabilities) are generally defined as those conditions that last > 12 months and are severe enough to create some limitations in usual activity. It has been estimated that chronic health conditions affect 10 to 30% of children, depending on the criteria. Examples of chronic illnesses include asthma, cystic fibrosis, congenital heart disease, diabetes mellitus, attention-deficit/hyperactivity disorder, and depression. Examples of chronic physical disabilities include meningomyelocele, hearing impairments or visual impairments, cerebral palsy, and loss of limb function.
Children with chronic health conditions may have some activity limitations, frequent pain or discomfort, abnormal growth and development, and more hospitalizations, outpatient visits, and medical treatments. Children with severe disabilities may be unable at times to participate in school and peer activities.
Children’s response to a chronic health condition largely depends on their developmental stage when the condition occurs. Children with chronic conditions that appear in infancy will respond differently than children who develop conditions during adolescence. School-aged children may be most affected by the inability to attend school and form relationships with peers. Adolescents may struggle with their inability to achieve independence if they require assistance from parents and others for many of their daily needs; parents should encourage self-reliance within the adolescent’s capability and avoid overprotection. Adolescents are going through a time when being similar to peers is very important, so they find it particularly difficult to be viewed as different (1).
Health care practitioners can be advocates for appropriate hospital services for children with chronic health conditions. Age-appropriate playrooms can be set up and a school program can be initiated with the oversight of a trained child life specialist. Children can be encouraged to interact with peers whenever possible. All procedures and plans should be explained to families and children whenever possible so the families know what to expect during the hospitalization, thus relieving the anxiety that can be created by uncertainty.
For families, having a child who has a chronic health condition can lead to loss of their hope for an “ideal” child, neglected siblings, major expense and time commitment, confusion caused by conflicting systems of health care management, lost opportunities (eg, family members providing primary care to the child are therefore unable to return to work), and social isolation. Siblings may resent the extra attention the ill child receives. Such stress may cause family breakup, especially when there are preexisting difficulties with family function.
Conditions that affect the physical appearance of an infant (eg, cleft lip and palate, hydrocephalus) can affect the bond between the infant and family members or caretakers. Once the diagnosis of abnormality is made, parents may react with shock, denial, anger, sadness or depression, guilt, and anxiety. These reactions may occur at any time in the child’s development, and each parent may be at a different stage of acceptance, making communication between them difficult. Parents may express their anger at the health care practitioner, or their denial may cause them to seek many opinions about their child’s condition.
Without coordination of services, care is crisis-oriented. Some services will be duplicated, whereas others will be neglected. Care coordination requires knowledge of the children’s condition, their family and support systems, and the community in which they function.
All professionals who care for children with chronic health conditions must ensure that someone is coordinating care. Sometimes the coordinator can be the child’s parent. However, the systems that must be negotiated are often so complex that even the most capable parents need assistance. Other possible coordinators include the primary care physician, the subspecialty program staff, the community health nurse, and staff of the 3rd-party payer. Regardless of who coordinates services, families and children must be partners in the process. In general, children from low-income families who have chronic conditions fare worse than others, in part because of lack of access to health care and care coordination services. Some children with terminal illness benefit from hospice care.