Trajectories of self‐management and independence in youth with spina bifida: Family‐related predictors of growth

The purpose of this study was to assess family‐related predictors of self‐management trajectories in youth with spina bifida (SB). Participants with SB completed the Adolescent/Young Adult Self‐Management and Independence Scale (AMIS II) interview across four time points. Family functioning, family‐related stress, and perceived family support were assessed by multiple reporters and multiple methods. Growth in AMIS II total self‐management and the AMIS II subscales (Condition and Independent Living) were estimated using linear mixed effect models as a function of family factors, after controlling for socio‐demographic, condition‐related, and neuropsychological variables that had been found to be significant predictors of self‐management in prior studies. Model fit and parsimony were assessed using Akaike's information criterion (AIC). This diverse community sample included 99 respondents aged 18–27 years old. About half were female (52.5%) and White (52.5%); 15.2% were Black, and 32.3% were Hispanic/Latino. Observed family cohesion at baseline was associated with all self‐management scales at age 18 (all p < 0.05). Growth in self‐management was associated with parent‐reported number of family stress events. For growth in total self‐management, the best model included age, race/ethnicity, family income, shunt status, lesion level, neuropsychological function, observed family cohesion, and an age‐by‐number of family stress events interaction effect. The study findings suggested that family factors were important predictors of self‐management trajectories, even after controlling for socio‐demographic, condition‐related, and neuropsychological covariates. Risk and protective factors identified in families of youth with SB can inform family‐focused interventions for self‐management.