Predictors of distinct trajectories of medical responsibility in youth with spina bifida

Mariam Kayle, David I. Chu, Alexa Stern, Wei Pan, Grayson N. Holmbeck*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

13 Scopus citations


Objective To determine if there are distinct developmental trajectories of medical responsibility in youth with spina bifida (SB) across ages 8-17 years and to identify condition-related, parental, and family systems predictors of membership in these trajectory groups. Methods Participants were 140 youth with SB and their parents who participated in four waves of a longitudinal study across 6 years (ages 8-15 years at Time 1). Multi-method (questionnaires and observed family interactions) and multi-respondent assessments were conducted during home visits. Results Findings revealed that there were two distinct developmental trajectories that characterized this sample, with one being labeled "high increasing"(two thirds of the sample) and one labeled "low increasing"(one third of the sample). Most predictor variables were significantly associated with trajectory group membership, with the exception of ethnicity, SES, and measures of conflict. When all significant univariate predictors were included in the same model, only intelligence quotient (IQ), family stress, and gender were retained as significant. Conclusions Most youth exhibited relatively rapid increases in responsibility over the course of late childhood and adolescence, but there was a smaller portion of the sample that did not exhibit this type of developmental trajectory. The magnitude of the IQ effect on group differentiation appeared to attenuate the effects of most other predictors. It will be important for clinicians working with youth with SB to recognize that the transfer of medical responsibility from parent to child cannot be expected to unfold in the same manner for all families of youth with SB.

Original languageEnglish (US)
Pages (from-to)1153-1165
Number of pages13
JournalJournal of pediatric psychology
Issue number10
StatePublished - 2020


  • Family
  • Longitudinal
  • Medical responsibility
  • Parenting
  • Self-management
  • Spina bifida
  • Trajectory

ASJC Scopus subject areas

  • Developmental and Educational Psychology
  • Pediatrics, Perinatology, and Child Health


Dive into the research topics of 'Predictors of distinct trajectories of medical responsibility in youth with spina bifida'. Together they form a unique fingerprint.

Cite this