Home treatment of pain for children and adolescents with sickle cell disease

Abstract

This ethnographic study examined family caregivers' perceptions of the effectiveness of comfort measures used at home for children with vaso-occlusive episodes (VOE) of sickle cell disease. Interviews were conducted in the hospital while children experienced VOE. Oral analgesics and most nonpharmacologic pain relief methods were rated by caregivers as only partly effective. Major themes that emerged from interview information reflected caregivers' efforts on behalf of their children in avoiding pain episodes, keeping a normal routine, "catching" the pain, getting their minds off the pain, helping the child get through the episode, and staying out of the hospital. Understanding the role of the family caregiver in home settings may assist health care professionals to provide more empathetic care to children with VOE and to their families when children are admitted to the hospital. Findings may encourage professionals to design the most effective methods of home pain management for these families.