A chronology of pain and comfort in children with sickle cell disease

Objective: To examine the patterns of children's and caregivers' descriptions of pain and the comfort measures used to relieve the pain of sickle cell disease (SCD) at home and in the hospital. Design: Qualitative and quantitative techniques were used to obtain data. Participants were seen twice, first with and then without a vaso-occlusive episode. Multiple simultaneous methodological triangulation was used to integrate the findings from ethnographic interviews and observations as well as limited quantitative findings about pain and comfort measures used. Setting: A Midwestern children's hospital with a regional SCD service. Participants: Twenty-one African American children and adolescents with SCD, aged 6 to 15 years, and 21 family caregivers. Results: An 8-phase chronology of pain and comfort was revealed from the data about pain and comfort in children with SCD. Although this chronology was an unexpected finding, it was consistent with the original aim of the investigation. Phase 1 (baseline) represented the usual state of the child's condition, which for most was free of pain. Phase 2 or the "pre-pain" state involved no vasoocclusive pain but the child began to show prodromal signs and symptoms of painful episodes, such as yellowing of the eyes or fatigue. Phases 2 through 7 involved increasing then decreasing levels of pain, including the pain start point (phase 3), pain acceleration (phase 4), peak pain experience (phase 5),pain decrease start point (phase 6),and steady pain decline (phase 7). A trip to the emergency department usually occurred during phase 5. In phase 8 (pain resolution), the pain had decreased to a manageable level so that the child could be discharged from the hospital. As pain increased and decreased, so did the number and variety of comfort measures. Conclusions: A chronology of the pain and comfort experiences for children and adolescents during a vaso-occlusive event of SCD emerged from the descriptive data of this study. Findings need to be examined further in larger, quantitative, longitudinal studies that examine more closely the duration, intensity, and character of pain at different times during vaso-occlusive episodes as well as the comfort measures used during specific phases of the pain event.