The impact of pediatric blood and marrow transplant on parents: Introduction of the parent impact scale

Katherine E. Heinze, Angie Mae Rodday, Marie T. Nolan, Kristin Bingen, Mary Jo Kupst, Sunita K. Patel, Karen Syrjala, Lynnette Harris, Christopher Recklitis, Lisa Schwartz, Stella Davies, Eva C. Guinan, Robert Noll, Grace Chang, Susan K. Parsons

Research output: Contribution to journalArticlepeer-review

Abstract

Background: Parents often experience stress-related complications when their child requires blood and marrow transplant (BMT). Previous studies have described the emotional toll BMT places on parents during the acute phase of care and within the context of clinical complications. In this paper we introduce the Parent Impact Scale (PARimpact), designed to capture physical and emotional challenges of the child's health on the parent. The primary aim of this paper is to examine psychometric properties of PARimpact, and the secondary aim is to explore factors associated with PARimpact scores for further hypothesis generation. Methods: This analysis used a merged dataset of two longitudinal studies. Accompanying parents (n = 363) of children undergoing BMT were surveyed up to six times from pre-BMT baseline to one year after their child's BMT. For this analysis, pre-BMT baseline responses to PARimpact were used to examine the factor structure with Principal Component Analysis (PCA) and Exploratory Factor Analysis (EFA). Construct validity was assessed, and multivariable regression was used to examine relationships between PARimpact and BMT clinical variables. Results: PCA and EFA revealed a one-factor solution with acceptable item loading; Cronbach's aα was 0.83 at baseline. Hypothesized differences in known groups were detected for BMT complications with significantly higher PARimpact scores for those with vs. without each complication. In the adjusted multivariable regression models, acute graft versus host disease (b = 5.3; p = 0.03), end organ toxicity (b = 5.9; p < 0.01), and systemic infection (b = 9.1; p < 0.01) were associated with significantly higher mean PARimpact scores in the first 3 months following transplant. After the first 3 months to 1 year post BMT, systemic infection was associated with increased mean PARimpact scores (b = 19.2; p < 0.01). Conclusions: Initial results suggest that the PARimpact is valid and reliable. Our finding that clinical complications increase the impact of BMT on the caretaking parent indicates the need for BMT healthcare professionals to identify these events and help parents navigate the BMT course. Clinical application of the PARimpact scale should be considered to identify high-risk families and provide targeted interventions to augment care.

Original languageEnglish (US)
Article number46
JournalHealth and Quality of Life Outcomes
Volume13
Issue number1
DOIs
StatePublished - Dec 12 2015

Keywords

  • Blood and marrow transplantation
  • Caregiving
  • Parent impact
  • Stress

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

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