Considering the chronicity, medical complexity, and potential severity of symptoms in children with SCD, it is feasible that caring for a child with SCD may have adverse psychosocial effects on caregivers, the child with SCD, and the broader family system10. Notably, some studies report caregivers of children with SCD experience significant levels of distress11,12,13,14 whereas other studies report levels of distress comparable to other minority caregivers who live in the same neighborhoods but do not have a child with a chronic illness15,16.
Barakat and colleagues examined the relationships between parental problem-solving abilities, disease-related complications in the child with SCD (from the medical record), and the child’s self-reported health-related quality of life (HRQOL)17. Findings suggested that parental problem-solving skills moderated the relationship between disease-related complications and the psychosocial HRQOL reported by the child with SCD.
With consideration of the findings from Barakat17 and the known challenges associated with raising a child with SCD, we sought to deliver an evidence-based intervention, Bright IDEAS Problem-Solving Skills Training (BI) to caregivers of these children. BI was originally designed to assist caregivers (i.e., primarily mothers) of children recently diagnosed with cancer. Further, BI was developed to improve problem-solving skills of caregivers with the expectation that improvements in problem-solving skills would lead to (mediate) reductions in distress18,19,20. We endeavored to deliver BI to caregivers of children with SCD, with the same focus of improving problem-solving skills, anticipating that improved coping skills would lead to less distress. To our knowledge, this was the first attempt to adapt and utilize an evidence-based intervention, designed to improve problem-solving skills and alleviate distress, with caregivers of children with SCD.
The purpose of this two-site pilot feasibility study was to modify the delivery of BI to reduce barriers to care and stigma surrounding behavioral healthcare for this population of caregivers. We appreciated that recruitment and retention of minority caregivers in clinical research has historically and continues to be a challenge2,21,22. We anticipated that our delivery modifications could improve rates of recruitment and retention. We also expected that caregivers of children with SCD who received BI would report improved problem-solving skills and lower levels of distress immediately following completion of BI and three months post-completion of BI compared to baseline.