Parent factors and adolescent sickle cell disease: Associations with patterns of health service use

Abstract

Objective: To examine relationships among parent characteristics (parent-adolescent relationship, parents' illness knowledge, and parents' perceptions of illness-related burden) and use of routine and urgent health services among adolescents with sickle cell disease (SCD). Method: Seventy adolescents, ages 12-18, and their parents completed questionnaires assessing illness knowledge, perceptions of illness burden, parent-adolescent relationships, and adolescents' psychological functioning. Information about pain, routine services (i.e., care at home, clinic visits) and urgent service use (i.e., emergency department visits, hospitalizations) was obtained from parents and medical records. Results: After we controlled for disease severity and life events, parents' perception of more illness-related stress was the strongest predictor of both types of service use. Greater parental knowledge about SCD also related to higher frequency of routine service use. Disease severity was strongly associated with frequency of urgent service use. Conclusions: Both parent characteristics and disease severity were associated with patterns of service use. Enhancing aspects of parental functioning may help families make adaptive decisions regarding health care services for SCD pain management.