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.