Pathways by which Maternal Factors are Associated With Youth Spina Bifida-Related Responsibility

Abstract

Objective Achieving condition-related autonomy is an important developmental milestone for youth with spina bifida (SB). However, the transfer of condition-related responsibility to these youth can be delayed due to parent factors. This study aimed to investigate two potential pathways by which maternal factors may be associated with condition-related responsibility among youth with SB: (a) Maternal adjustment → perception of child vulnerability (PPCV) → youth condition-related responsibility; and (b) Maternal PPCV → overprotection → youth condition-related responsibility. Methods Participating youth with SB (N = 140; Mage=11.4 years, range = 8–15 years) were recruited as part of a longitudinal study; data from three time points (each spaced 2 years apart) from the larger study were used. Mothers reported on personal adjustment factors, PPCV, and overprotection. An observational measure of overprotection was also included. Mothers, fathers, and youth with SB reported on youths’ degree of responsibility for condition-related tasks. Analyses included age, lesion level, IQ, and the dependent variables at the prior wave as covariates. Results Bootstrapped mediation analyses revealed that PPCV significantly mediated the relationship between maternal distress and youth responsibility for medical tasks such that higher levels of distress at Time 1 predicted higher levels of PPCV at Time 2 and lower youth medical responsibility at Time 3. Furthermore, self-reported maternal overprotection significantly mediated the relationship between maternal PPCV and youth responsibility for medical tasks. Conclusions Maternal personal distress, PPCV, and self-reported overprotection are interrelated and affect youth’s condition-related responsibility. Interventions for mothers of youth with SB that target these factors may improve both maternal and youth outcomes.

Bidirectional, longitudinal associations between chronic pain and family functioning in youth with spina bifida.

“…In contrast, associations between observed family environment and youth chronic pain were nonsignificant. Other studies have similarly reported different findings for parent-reported versus observed parenting behaviors (Moens et al, 2018), including studies using the current study sample (Driscoll et al, 2020). These findings may also indicate that parent and child perception of family environment may be more salient to the experience of youth chronic pain than is the observed family environment.…”

Longitudinal Trajectories of Clean Intermittent Catheterization Responsibility in Youths with Spina Bifida

“…The original longitudinal study has been described previously. 9 Of 140 families of children with SB at Time 1, 110 (79%) participated at Time 2, 102 (73%) participated at Time 3 and 93 (66%) participated at Time 4.…”

“…This was a secondary analysis of a longitudinal prospective cohort study that has been described elsewhere. 9 In brief, families and youths with SB were recruited from 4 hospitals and a statewide SB association in the Midwest for a longitudinal study of neuropsychological functioning, social relationships and psychosocial adjustment among youths with SB. Inclusion criteria were 1) a diagnosis of SB (myelomeningocele, lipomeningocele or myelocystocele), 2) age 8–15 years, 3) proficiency in English or Spanish, 4) involvement of at least 1 primary caregiver and 5) residence within 300 miles of the laboratory.…”

Controle Materno e Autocuidado de Crianças com Diabetes Tipo 1

“…Estudos prévios chegaram a achados semelhantes (Butler et al, 2007;Greene et al, 2010). É possível que o instrumento utilizado tenha sido pouco efetivo para evocar relatos de práticas superprotetoras, que são uma tendência importante nas práticas de controle de mães de crianças portadoras de doenças crônicas (Driscoll et al, 2020;Kim et al, 2019). Assim, sugere-se que futuros estudos adotem instrumentos diferentes, sobretudo, medidas observacionais.…”