The Experience of Parenting an Adolescent with Spina Bifida

Abstract

Parents of adolescents with spina bifida (SB) face unique challenges of which they may not be aware. The purpose of this study was to heighten awareness of the challenge of parenting such adolescents. This enhanced understanding can help rehabilitation professionals optimize their interventions with families. In this qualitative study, which was part of a larger mixed-method descriptive investigation exploring adaptation by adolescents with SB, we used content analysis to evaluate 20 parent interviews for common domain, themes, and subthemes. The analysis yielded four major domains: (a) daily life experiences, (b) the dance of individuation, (c) reflections on parenting, and (d) practice suggestions for healthcare professionals. Overall, experiences of the parents were positive. Parents described meeting daily demands and balancing independence-dependence needs with the adolescent as major challenges. Rehabilitation professionals must provide guidance to foster autonomy, decision making, cognitive skill building, and coping skills to help parents and adolescents manage independence-dependence issues and multiple life demands.

Spina bifida

“…A meta-analysis of 15 studies 150 found medium to large negative effects for the impact of spina bifida on parents’ psychological adjustment, with somewhat larger effect sizes for mothers ( d = 0.73) than for fathers ( d = 0.54), as well as negative effects on parental stress levels and parenting quality 141, 151. Such parents feel less satisfied and competent as parents, feel more isolated, are less adaptable to change, and hold less optimistic views about the future than comparison parents 148, 152, 153.…”

A Family Perspective: How this Product can Inform and Empower Families of Youth with Spina Bifida

“…Typically, such parents feel less satisfied and competent as parents, feel more isolated, are less adaptable to change, and hold less optimistic views about the future than comparison parents (Barakat & Linney 1995; Grosse et al 2009; Holmbeck et al 1997; Sawin et al 2003). Parents who are single, socially isolated, older, or from an ethnic minority or a low SES background are particularly at-risk for such outcomes (Barakat & Linney 1992; Fagan & Schor 1993; Holmbeck, Coakley et al 2002; Kronenberger & Thompson 1992b; Macias et al 2001).…”

The relationship of neuropsychological functioning to adaptation outcome in adolescents with spina bifida

“…Qualitative data, descriptions of protective and outcome variables, and relationship of protective factors to outcomes have been previously reported (Buran et al, 2004;Sawin et al, 2002Sawin et al, , 2003aSawin et al, ,b, 2006. Therefore, only procedures directly relating to the current study questions are presented here.…”

“…The rationale and validity of this model were presented previously (Sawin et al, 2003a). In analyses using interview and clinical data only, differing patterns of relationships between risk and protective factors with outcomes were identified (Sawin et al, 2002(Sawin et al, , 2003a.…”