Perceptions of problematic events and quality of care among patients and parents after successful therapy of the child's malignant disease

Fifty-three children (mean age 6.4 at diagnosis, 12.8 years at completion of questionnaires) identified as having acute lymphoblastic leukemia (48) or non-Hodgkin lymphoma (5) during the 11-year period of 1976-1986 participated in the present study. Patients' and parents' perceptions of malignancy- related changes in significant relationships, of treatment-related problematic events, as well as of the quality of care provided during induction and maintenance-therapy were assessed using questionnaires. The results indicated mainly positive changes in significant relationships during the chemotherapy. However, concurrent stressful life events affected the relationships adversely. Alopecia (hair loss) was the most problematic disease-related event for the patient and the patient's anorexia for the parents. Patients' complaints were most often about the quality of care during induction, namely pain, fear and insufficient information. Parents' complaints were about the lack of continuity in the staff-patient relationship during maintenance-therapy.