U Ek
Tomteboda Resource Centre, Dept. of Psychology Stockholm University, Solna, Sweden
Aims. To study the emotional reactions of the parents and children after diagnosis and treatment of retinoblastoma. Three areas were evaluated 1) How the disease was detected and diagnosed and how the families were treated by health personnel; 2) The parents' and children's reactions to the disease and treatment; 3) The information and help needed during various stages.
Method. This is a populationbased study. All children diagnosed in Sweden during 1992-94 (N=22) were followed in a longitudinal prospective study. Qualitative data were obtained currently, the observation period ended in 2000.
Results. Four children were diagnosed and treated early in life because they had hereditary retinoblastoma. Eighteen children had diffuse changes in the eye as the main reason for consulting a physician. Seven of them had a delay in diagnosis, their parents first contacted the Child Health Care Centre and were told not to worry, but "wait and see". This delay of the diagnosis imprinted their adaptation and reactions to the trauma and lead to self accusations and criticisms of health professionals. Symptoms of acute crisis were present in ¾ of the families. Among the single parents no reactions of acute crisis following the diagnosis were seen. Most of the enucleated children showed reactions of crisis and loss. Anxiety was initially related to the artificial eye. By the age of two-three years they mainly reacted non-verbally. From four years, they began to talk more about their thoughts and feelings. Only the four children treated early in life by irradiation alone showed no reactions to trauma.
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