J Nurs Acad Soc.  1992 Dec;22(4):491-505.

The Experience of Parents Whose Child is Dying with Cancer

• Cho YS
• Kim S
• Martinson

Abstract

The purpose of this research was to understand the structure of the lived experience of parents of a child terminally ill with cancer. The research question was "What is the structure of the experience of parents of a child terminally ill with cancer?" The sample consisted of 17 parents of children admitted to the cancer units of two university hospitals in Seoul. The unstructured interviews were carried out from October 10, 1991 through January 10, 1992. They were audio-recorded and analyzed using Van Kaam's method. Parents ascribed the cause of the cancer to the mother's emotional imbalance during pregnancy, the mother's stress, failure to observe religious rites, food, the parent's sin, misfortune and pollution. The theme clusters were tension, fear and depression experienced during pregnancy, stress that children suffer from abusive parents, failure to observe religious activities, bad luck, and sins committed during a previous life. When the child suffered a recurrence of cancer, the parents experienced negative emotions, nervousness, sorrow, depression and death. The theme clusters were feelings of despair, helplessness, regret, guilt, insecurity, emptiness and apathy. The long struggle with cancer resulted in the loss of economic security, loss of psychological and physical well being, and social withdrawal. The theme clusters were the economic burden of medical cost, giving up treatment, debt, limited medical insurance coverage and blood transfusion. The loss of psychological well being included stress, lack of support systems, inability to carry out responsibilities, lack of trust of the medical team, family breakdown, inappropriate expression of emotion and not disclosing the diagnosis to the child. Physically the parents suffered fatigue, insomnia, loss of appetite, loss of weight, dizzness, headache, psychosomatic symptoms, and increased consumption of liquor and cigarettes. Social withdrawal was manifested by taking time off from work to look after the child, decrease of outside social activities and feelings of isolation. Influences on family life were spousal conflicts, negative response of siblings, separation of the family members and economic hardship. The theme clusters were blaming a spouse for the cause of the illness and disagreements, maladjustment, loneliness, hostility and depression of siblings. The high price of medical care over the long period was a major factor influencing the life of the family. Positive experiences during the child's long illness were the strengthening of support systems and religious beliefs and financial help from social organizations. The support of one's spouse primarily helped to overcome the stress of the long illness. In addition, support was received from parents of other children with cancer and from nurses and religious leaders. The nurse, by providing empathetic support, should be a person with whom parents can express their feelings and share their experiences.

MeSH Terms

Anxiety
Apathy
Appetite
Blood Transfusion
Child*
Depression
Diagnosis
Fatigue
Guilt
Headache
Hospitals, University
Hostility
Humans
Insurance Coverage
Loneliness
Parents*
Pregnancy
Recurrence
Religion
Seoul
Siblings
Sleep Initiation and Maintenance Disorders
Spouses
Terminally Ill
Tobacco Products