Preschool Pain Management Program for Young Children with Sickle Cell Disease: A Pre-Post Feasibility Study.

Abstract

Vaso-occlusive pain crises in sickle cell disease (SCD) often begin in early childhood. We developed an online pain management intervention to teach caregivers of preschool-aged children with SCD behavioral pain management strategies. The feasibility study goals were to examine response to recruitment, barriers to participation, engagement, acceptability and perceived usefulness of the intervention, and suitability of outcome measures. Caregivers of children aged 2.0-5.9 years with access to text messaging and a device to access online videos were recruited from a Southeastern outpatient hematology clinic for a 12-week intervention consisting of pain management videos. Videos taught caregivers behavioral pain management strategies and adaptive responses to pain. Workbook activities helped tailor strategies to their child. Caregivers completed process measures as well as baseline and follow-up measures of pain catastrophizing (Pain Catastrophizing Scale-Parent Report) and responses to their child's pain (Adult Response to Children's Symptoms). Fifty percent (10 of 20) of eligible parents enrolled. Caregivers partially completed (N = 6), completed (N = 3), or did not engage (N = 1) in the intervention. Caregivers who engaged in the program reported implementing the pain management strategies. The intervention was rated as high quality, relevant, and useful. Measures of pain catastrophizing and responses to their child's pain appeared sensitive to change. The intervention to promote adaptive coping to pain was acceptable and feasible for caregivers though we found barriers to delivering the intervention to parents. Evaluation of a modified version of the program is indicated to assess implementation issues and effectiveness.