Purpose: To identify factors associated with parent activation in parents of children undergoing pediatric hematopoietic stem cell transplant (HSCT) in the 6 months following HSCT, and to address if their association with parent activation changes over time.
Methods: Measures for this analysis, including the Parent-Patient Activation Measure (Parent-PAM), were completed by parents (N = 198) prior to their child's HSCT preparative regimen and again at 6 months post-HSCT. Clinical data were also collected. A repeated measures model was built to estimate the association between clinical and demographic factors and parent well-being on Parent-PAM scores. Interactions with time were considered to test for changing effects over time.
Results: Throughout the HSCT course, older parent age was associated with lower Parent-PAM scores (β = -0.29, p = 0.02) and never being married was associated with higher scores (versus married, β = 12.27, p = 0.03). While higher parent emotional functioning scores were not associated with activation at baseline, they were important at 6 months (baseline, β = -0.002, p = 0.96; interaction, β = 0.14, p = 0.03). At baseline, longer duration of illness was associated with increased activation, but this effect diminished with time (baseline, β = 3.29, p = 0.0002; interaction, β = -2.40, p = 0.02). Activation levels dropped for parents of children who went from private to public insurance (baseline, β = 2.95, p = 0.53; interaction, β = -13.82, p = 0.004). Clinical events did not affect Parent-PAM scores.
Conclusions: Our findings reveal important changes in the factors associated with parent activation in the first 6 months after pediatric HSCT. These findings may reflect the emotional and financial toll of pediatric HSCT on parent activation.