Changing factors associated with parent activation after pediatric hematopoietic stem cell transplant.

Abstract

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. 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. 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. 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.