Severe illness, even if temporary, can provoke a great deal of anxiety for children and their families. Chronic health problems are those that last longer than 12 months and are severe enough to create some limitations in usual activity. Chronic health problems usually cause even more emotional distress than temporary problems.
Examples of chronic health problems include
Coping with illness may require coping with pain, undergoing tests, taking drugs, and changing diet and lifestyle. A chronic health problem often interferes with a child's education because of frequent absences from school. The illness as well as side effects from treatments may impair the child's ability to learn. Even though parents and teachers may have lower academic expectations of ill children, it is important for them to maintain the challenges and encouragement children need to achieve their best.
Illness and hospitalization deprive children of opportunities to play with other children. Other children may even reject or taunt an ill child because of physical differences and limitations. Children can become self-conscious if illness changes their body, particularly when the changes occur during childhood or adolescence rather than being present from birth.
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 be independent if they need parents and others to help them with many of their daily needs. Adolescents also find it particularly difficult to be viewed as different from their peers.
Parents and family members may overprotect the child or adolescent, discouraging independence.
Hospitalization is a frightening event for children even under the best circumstances. Everything about the hospital stay, including routine admission processes, should be explained to the parents and children so they know what to expect during their stay. Ideally, children will be in a children's hospital or other hospital that focuses on children. In most hospitals, parents are encouraged to stay with their children, even during procedures that may be painful or frightening. Despite their parents' presence, children may become clingy or dependent (regress) while in the hospital.
Chronic illness of a child places enormous psychologic, financial, emotional, and physical burdens on parents. Sometimes the parents become closer by working together to overcome these burdens. However, often the burdens can strain the relationship. Parents may feel guilty about the illness, particularly if it is genetic, resulted from complications during pregnancy, or was caused by an accident (such as a motor vehicle collision), or a behavior of a parent (such as smoking). In addition, medical care can be expensive and can cause the parents to miss work. Sometimes one parent assumes the burden of the care, which can lead to feelings of resentment in the caregiving parent or feelings of isolation in the other. Parents may feel angry with health care providers, themselves, each other, or the child. Parents may also be in denial about the severity of their child's condition. The emotional distress involved in providing care can also make it difficult to form a deep attachment to a disabled or seriously ill child.
Parents who spend a lot of time with an ill child often have less time to devote to other children in the family. Siblings may resent the extra attention the ill child receives and then feel guilty for feeling that way. The ill child may feel guilty about hurting or burdening the family. Parents may be too lenient with the ill child, or they may enforce discipline inconsistently, particularly if the symptoms come and go.
Although a child's illness is always stressful for the entire family, there are several steps a parent can take to help lessen the impact. Parents should learn as much as possible about their child's illness from reliable sources, such as the child's doctors and reliable medical resources. Information obtained from some Internet sources is not always accurate, and parents should check with their doctors about the information they read. Doctors can often refer parents to a support group or another family that has already faced similar issues and can provide information and emotional support.
Services needed by the child may involve care by medical specialists, nurses, home health personnel, mental health personnel, and personnel from a variety of other services. When available, child life specialists, who are trained to help children and families cope with the challenges of illness and hospitalization, are wonderful resources for children and parents. A case manager may be needed to help coordinate medical care for children with complex chronic illness. The child's doctor, nurse, social worker, or other professional can serve as the case manager. The case manager can also ensure that the child receives training in social skills and that the family and child receive appropriate counseling, education, and psychologic and social support, such as respite care.
Regardless of who coordinates services, the family and child must be partners in the care and decision-making process because the family is the child's primary source of strength and support. This family-centered approach ensures that information is shared and empowers the family and is an essential part of the child's care. In keeping with this child- and family-centered approach, more and more medical offices are transforming their practices into patient-centered medical homes or PCMHs. A PCMH is a medical office that adheres to additional quality guidelines from the National Center for Quality Assurance. The PCMH care team fully involves patients in designing and implementing their own care. Care managers use tailored care plans and other protocols to make sure all patients, especially those with complex medical issues, are more involved with managing their own medical issues and care.