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Preschool Pain Management Program for Young Children with Sickle Cell Disease: A Pre-Post Feasibility Study
Julia D Johnston1, Jeffrey Schatz1, Sarah E Bills1
1Department of Psychology, University of South Carolina, USA.
Insights
An online pain management program for caregivers of children with sickle cell disease (SCD) was feasible and acceptable. Further evaluation of a modified program is recommended to address implementation barriers and assess effectiveness.
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.
Objective:
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.
Methods:
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).
Results:
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.
Conclusions:
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.
