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

Area of Science:

• Pediatric Hematology
• Pain Management
• Digital Health Interventions

Background:

• Vaso-occlusive pain crises are common in children with sickle cell disease (SCD), often starting in early childhood.
• Caregivers require effective strategies to manage pain and support adaptive coping in young children with SCD.

Purpose of the Study:

• To assess the feasibility, acceptability, and usefulness of an online pain management intervention for caregivers of preschool-aged children with SCD.
• To evaluate the suitability of outcome measures for assessing changes in caregiver pain catastrophizing and responses to their child's pain.

Main Methods:

• A 12-week online intervention delivered via videos and workbook activities taught caregivers behavioral pain management strategies.
• Caregivers of children aged 2-5 years with SCD were recruited from a hematology clinic.
• Process measures and baseline/follow-up assessments of pain catastrophizing and caregiver responses to symptoms were collected.

Main Results:

• Fifty percent of eligible caregivers enrolled; engagement varied, with some caregivers implementing learned strategies.
• The intervention was rated as high quality, relevant, and useful by engaged participants.
• Outcome measures for pain catastrophizing and caregiver responses appeared sensitive to change.

Conclusions:

• The online pain management intervention is acceptable and feasible for caregivers of young children with SCD.
• Barriers to intervention delivery were identified, suggesting a need for program modification.
• Further evaluation of a revised intervention is warranted to address implementation challenges and confirm effectiveness.