title: Changing factors associated with parent activation after pediatric hematopoietic stem cell transplant.
abstract: OBJECTIVE
  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.
authors.affiliation: The Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, Boston, MA, USA, bwpennarola@gmail.com.
authors.forename: Brian W
authors.initials: BW
authors.lastname: Pennarola
authors.forename: Angie Mae
authors.initials: AM
authors.lastname: Rodday
authors.forename: Kristin
authors.initials: K
authors.lastname: Bingen
authors.forename: Lisa A
authors.initials: LA
authors.lastname: Schwartz
authors.forename: Sunita K
authors.initials: SK
authors.lastname: Patel
authors.forename: Karen L
authors.initials: KL
authors.lastname: Syrjala
authors.forename: Deborah K
authors.initials: DK
authors.lastname: Mayer
authors.forename: Sara J
authors.initials: SJ
authors.lastname: Ratichek
authors.forename: Eva C
authors.initials: EC
authors.lastname: Guinan
authors.forename: Mary Jo
authors.initials: MJ
authors.lastname: Kupst
authors.forename: Judith H
authors.initials: JH
authors.lastname: Hibbard
authors.forename: Susan K
authors.initials: SK
authors.lastname: Parsons
mesh_terms: D000328:Adult; D002648:Child; D003710:Demography; D004644:Emotions; D005260:Female; D018380:Hematopoietic Stem Cell Transplantation / Q000379:methods* / Q000523:psychology*; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000523:psychology / Q000628:therapy; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D010549:Personal Satisfaction; D016032:Randomized Controlled Trials as Topic