Helping Children Cope with Chronic Illness
D. Richard Martini, M.D.
Department of Child and Adolescent Psychiatry,
Children's Memorial Hospital, Chicago, Illinois
The chronically ill child has some sense of illness severity, even without medical explanation. He or she receives clues through his or her knowledge of illness, the urgency of treatment, contact with other patients, and the responses of family and friends. This process is "fluid" however, and may change day to day depending upon the circumstances. It is, therefore, important for the child and adolescent psychiatrist to be aware of fluctuations in patient response and wait for communication rather than anticipate it.
Time becomes an important concept to the child; there just never seems to be enough of it and there are no guarantees that it will always be available. This sense of a foreshortened future is a "loss of innocence." This marks an emotional reaction to illness. Children with chronic illnesses perceive the past differently; it becomes an idealized place to visit. The child may display a personal photograph taken before the diagnosis, saying, "This picture is how I really look." Some children, however, seem to ignore the past when they begin treatment for a chronic illness. It is as if the illness takes over all aspects of the child's life and everything that has gone on before was a different lifetime. Time defined by precise and rigidly enforced medical schedules become the routine. Immediacy of events and lack of flexibility inhibit the typical wanderings of childhood. There is also a constant sense of anticipation. Not the excited anticipation that healthy children associate with important events and opportunities, but an anxious anticipation that accompanies medical interventions whose outcome is uncertain.
Medical illness can rapidly spin out of control for the child. Procedures, medications, hospitalizations, and restrictions are all perceived as life changes imposed by others. The optimal response by clinicians and caregivers is to allow the child or adolescent as many options as possible during the diagnostic process and treatment phase of the illness. Some of the choices may seem inconsequential, but each is a step towards greater control for the child. Along with this notion of control is the ability to maintain a sense of identity. For children and adolescents this frequently involves affiliation with their peer group and the stability of the "group's identity" based on appearance, interests, academics, and social life. They should be given every opportunity to continue friendships and other social relationships. Every child also wants to preserve his or her own identity that incorporates both individual and familial traits. This can be particularly difficult when the child experiences physical and emotional changes characterized primarily by their illness. Accomplishments measured in terms of the disorder that elicit responses, such as, "You played a great game for someone with diabetes," take away the child's sense of belonging to their peer group. Children may encounter peers moving on to face new academic, social, and athletic challenges, while they remain behind until the illness either remits or resolves enough to proceed. Developmental concerns are also a factor; these children may not be able to develop a sense of belonging to their peer group because of their illness.
Depression in Medical Illness
Separating the impact of the illness from symptoms of mood disorder is a challenge when making the diagnosis of depression in medically ill children. Occasionally caregivers rationalize their approach to young patients with a belief that children suffering from severe illness will naturally experience symptoms of depression. They may either intervene with every patient or avoid the diagnosis and provide few psychiatric services. Each case should be assessed individually, without assumption or bias. For example, characteristics of medical illness do not necessarily predispose young patients to depression. Illness severity as measured by the number of hospitalizations and relapses is not directly related to increased risk. The type of illness may also determine a patient's response. Cancer patients, for example, frequently acknowledge low depression rates despite severe illness. The term "cancer" is often associated with death among patients and caregivers, more so than with other diseases. These children probably use denial and repression as defense mechanisms to cope with the stress of diagnosis and treatment. Challenging these attempts at self-protection under the guise of helping the patients adjust to illness is not necessarily helpful.
Depression occasionally complicates the clinical presentation in a child with chronic illness. Young patients present with depression as a direct consequence of the illness or its treatment, as a result of the impact of the disease on the individual and family, or as an exacerbation of a pre-existing affective disorder. Rates of depression in pediatric chronic illness vary depending upon the study sample: 7% of acute pediatric inpatients, 12% to 13% of pediatric bum unit patients, 13% of cardiology outpatients, 15% of asthmatic adolescents, and 23% of orthopedic inpatients. Children with chronic illnesses reveal trends consistent with depression in the general pediatric population. Adolescent girls with a chronic illness are more likely to suffer from depression than adolescent males. Low levels of social support lead to poorer outcomes. Family history of depression is also a risk factor for the development of mood disorders. Illnesses involving the central nervous system, those with obvious adverse cosmetic effects, or that severely compromise the patient's activity level are more likely to reinforce the development of a mood disorder. Relationships exist between depressive symptoms and mortality in asthma, retinopathy in juvenile diabetes, and recurrent major depression in female adolescent diabetics. Occasionally distinctions between illness and depression are difficult to discern. Patients may be limited in mobility, activity level, and exercise tolerance by the disease and appear depressed. Positive reinforcement for age appropriate levels of functioning may not occur with chronic illness. Parents fear complications in the child's presentation and so further limit participation, leaving the patient prone to mood disorders. Chronic pain associated with medical illness also reinforces a level of disability and dependency that promotes depressive symptoms.
A few studies have examined the development of depression over the course of a disease. In juvenile diabetics, for example, depression was most likely in the first year after diagnosis. Children and adolescents with initial adjustment problems were more likely to suffer from depression later in the course of the disease. The way the child or adolescent thinks about the illness over time affects emotional response. Patients with low self-esteem who tend to blame themselves for problems are more likely to report depressive symptoms. In addition, young patients who feel as though their illness and its treatment are out of their control, or in the control of unknown forces, are negatively affected.
Finally, stressful life events increase the likelihood of depression in medically ill children. Studies of pediatric orthopedic patients, children with inflammatory bowel disease, and young patients with seizure disorders noted that subjects were vulnerable to depression when experiencing more adverse events and higher levels of family and interpersonal conflict in their lives. Some studies of depressed, medically ill children noted high rates of past loss or separation from a significant adult figure as a result of death, chronic illness, or abandonment.
Coping with a life-threatening illness
Children must not only face the development and exacerbation of medical illness, but also the outcome should treatment fail. This includes coping with death and dying. Notions of death are varied and unique in a pediatric population. The onset of a critical illness frequently leads the child to wonder about the distinction between being dead and alive. Occasionally this fascination can be upsetting and the child becomes more irritable and sensitive. More often, the patients develop rationalizations to explain why death does not apply to his or her situation. This can be interpreted as denial, but it emotionally supports the child as he or she faces the challenges of illness. Children will frequently acknowledge their proximity to death only after the crisis passes and the patients believe recovery is likely.
The role of spirituality can be crucial, even in young children. A strong affiliation with religion can be a strength for the individual and family. However, the young patient may occasionally be confused by the notion that a loving God would allow such a thing to happen. Children turn these concerns into a belief that God is on their side in this struggle and will lead them back to good health. There may also be a fear that God is punishing them for some past transgression. This is particularly troubling because it implies responsibility for the illness and its consequences. Issues raised by children and adolescents therefore should be openly discussed with family and medical professionals. Whenever possible, and with family agreement, members of the clergy should be involved. Clinicians must take care not to interfere with the family's belief system through ignorance or contradiction.
The critically ill child feels most vulnerable when another patient with a similar or identical illness dies. Fears of separation from loved ones, suffering, and death rush to the child's consciousness leading to anticipatory grief. Although the intensity of these feelings may pass within hours to days, the sadness remains. Parents should inform the young patients about the death as soon as possible. This prevents the patients from discovering death or dying in casual conversation with peers or staff. Such interactions can be particularly traumatic and do not allow the child to discuss the event with those close to them.
Children with terminal illnesses are sensitive to the notion of being "replaced" in the family. In one such case, the mother of an eight-year-old girl dying from liver rejection post transplantation became pregnant in the months prior to the patient's final hospitalization. Although both parents denied any connection between the pregnancy and their daughter's near terminal illness, the implications were clear to the patient. She occasionally asked about the baby and where it would sleep in the house.
The terminal phase of an illness should emphasize comfort, support, and symptom control above all else. The child is aware that options are diminishing and begins to make preparations for death. Letters are written and plans are made to give gifts and say good-byes. As death approaches, the child may become quiet and less spontaneous. Comfort is often found in the company of friends and family with little physical contact and little said. Parents should not interpret this as rejection, but as an expected preparation for death. The psychiatrist can clarify this situation for caregivers and ease their anxiety.
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