Children and Youth with Special Health Care Needs

Children with special health care needs may need to cope with pain, undergo tests, and take medications and have abnormal growth and development, more hospitalizations, outpatient visits, and medical treatments than their peers. Illness and hospitalization deprive children of opportunities to play and interact with other children.

Other children may even reject or taunt a child because of physical differences and limitations. Children with special health care needs can become self-conscious if a chronic health problem changes their body, particularly if the changes occur during childhood or adolescence rather than being present from birth.

A chronic health problem often interferes with a child's education because of frequent absences from school. The problem as well as side effects resulting from treatments may impair the child's ability to learn. Children with special health care needs are less likely to be engaged at school and to flourish than peers, and children with severe disabilities may be unable at times to participate in peer activities.

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 a child with special health care needs, which discourages the child's 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 is tailored to 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.

When a child has a chronic health problem, parents and other family members may experience psychological, physical, and financial burdens. Sometimes the parents become closer by working together to overcome these burdens. However, often the burdens can strain the parents' relationship. They may feel guilty about the child's health problem, particularly if it is genetic, resulted from complications during pregnancy or delivery, or was caused by an accident (such as a motor vehicle crash) or a behavior of a parent (such as smoking). In addition, medical care can be expensive and time-consuming and can cause the parents to miss work or not have a full-time job. 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 professionals, themselves, each other, or the child. Parents may also be in denial about the severity of their child's health problem. The emotional distress involved in providing care can also make it difficult to form a deep attachment to a child who is disabled or seriously ill.

A condition that affects the physical appearance of an infant (for example, cleft lip and cleft palate) can affect the bond between the infant and parents and other family members.

Parents who spend a lot of time with a child with a chronic health problem often have less time to devote to other children in the family. Siblings may resent the extra attention the child receives and then feel guilty for feeling that way. The child who has the health problem may feel guilty about hurting or burdening their family. Parents may be too lenient with the child, or they may enforce discipline inconsistently, particularly if the child has symptoms that come and go.

Although a child's chronic health problem may be stressful for the entire family, there are several steps parents can take to help lessen the impact. Parents should learn as much as possible about their child's medical condition from reliable sources, such as the child's doctors. 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 doctors, 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 child with a complex chronic health problem needs a dedicated care coordinator. Care coordinators can be nurses, social workers, or other health care professionals. The care coordinator can also ensure that the child receives training in social skills and that the family and child receive appropriate counseling, education, and psychological and social support, such as respite care for caregivers.

Regardless of who coordinates care 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 fully involving patients in designing and implementing their own care. Care coordinators 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.