Pain, sleep disturbance, and fatigue in children with leukemia and their parents: A pilot study

Purpose/Objectives: To determine the feasibility of collecting symptom data at home from school-age children with acute lymphoblastic leukemia (ALL) and from their fathers and mothers and to obtain initial descriptions of pain, sleep disturbance, and fatigue experienced by the family members at home. Design: Prospective and descriptive. Setting: Children's homes in Oregon and southwestern Washington. Sample: 9 children with ALL (aged 8-16 years), 6 fathers, and 7 mothers. The children received vincristine during the maintenance phase of their outpatient chemotherapy treatments. Methods: With age-appropriate, paper-and-pencil diaries and wrist actigraphy, data were collected for three days in the families' homes. Families were reminded by telephone to complete their sleep and activity diaries. Main Research Variables: Pain, sleep disturbance, and fatigue in school-age children and their fathers and mothers. Findings: Most of the families who were approached indicated willingness to participate in the study. After receiving outpatient chemotherapy, the children reported pain, sleep disturbance, and fatigue data over three days. Fathers and mothers also reported symptoms. Actigraphy showed children waking more often during the night than mothers or fathers. Conclusions: Children's pain, sleep disturbance, and fatigue suggest that the symptoms are influencing families' quality of life. Larger studies are needed to examine the symptom patterns and health outcomes of children, fathers, and mothers over the course of chemotherapy. Implications for Nursing: Improving sleep and managing pain and fatigue after chemotherapy treatment for children with ALL may improve health outcomes for children and parents.