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Objective: Benefit-finding and growth is an important process across a range of medical populations. However, it has been understudied in the context of lifelong chronic conditions, such as spina bifida (SB). This study aimed to develop a new measure of benefit-finding and growth for youth with SB, confirm its factor structure, and examine its psychometric properties., Method: To generate items for the new measure, 20 adolescents and young adults with SB completed qualitative interviews regarding their experience of living with SB. Interviews were coded for benefits. Questionnaire items were generated from these benefits, and an expert panel refined the wording of these items. The resultant 31-item measure was shared with six of the 20 participants for feedback and then piloted among 251 youth with SB. The factor structure of the measure was confirmed and reliability and convergent validity were assessed., Results: Both a one- and four-factor structure were supported. The four factors include: Life Perspectives and Priorities, Personal Characteristics and Traits, Connections and Opportunities, and Problem Solving. Higher total and factor scores represent greater benefit-finding and growth. The measure demonstrated excellent internal consistency (α = 0.95). The new measure also showed significant positive correlations with optimism, positive affect, and life satisfaction., Conclusions: This study produced a measure of benefit-finding and growth for youth with SB. Clinically, information about what youth with SB perceive to be their areas of strength and growth from their condition provides crucial insight into which factors to enhance in this population., (© The Author(s) 2024. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Objective: The objective of the study was to determine if health literacy is associated with health-related quality of life (HRQOL) in adolescents and young adults (AYAs) with spina bifida., Study Design: Between June 2019 and March 2020, the Patient-Reported Outcome Measurement Information System Pediatric Global Health-7 (PGH-7), a measure of HRQOL, and the Brief Health Literacy Screening Tool (BRIEF) were administered to patients ≥12 years old with a diagnosis of spina bifida seen in our multidisciplinary spina bifida center. Questionnaires were completed at scheduled clinic visits. The primary outcome was the PGH-7 normalized T-score. The primary exposure was the BRIEF score. Demographic and clinical characteristics were obtained from the medical record. Nested, multivariable linear regression models assessed the association between health literacy and the PGH-7 score., Results: Of 232 eligible patients who presented to clinic, 226 (97.4%) met inclusion criteria for this study. The median age was 17.0 years (range: 12-31). Most individuals were female (54.0%) and had myelomeningocele (61.5%). Inadequate, marginal, and adequate health literacy levels were reported by 35.0%, 28.3%, and 36.7% of individuals. In univariable analysis, higher health literacy levels were associated with higher PGH-7 scores. In nested, sequentially adjusted multivariable linear regression models, a higher health literacy level was associated with a stepwise increase in the PGH-7 score. In the fully adjusted model, adequate health literacy and marginal health literacy, compared with inadequate health literacy, were associated with increases in a PGH-7 score of 3.3 (95% CI: 0.2-6.3) and 1.1 (95% CI: -2.0 to 4.2), respectively., Conclusions: Health literacy was associated with HRQOL after adjusting for demographic and clinical factors. Strategies incorporating health literacy are needed to improve HRQOL in AYAs with spina bifida., (Copyright © 2022 Elsevier Inc. All rights reserved.)

The purpose of this review is to discuss research methods and clinical management strategies employed with other conditions (i. e., spina bifida and craniofacial conditions) and how these methods and strategies could be applied to youth with disorders of sex development (DSD). The review focuses specifically on the potential overlap between DSD and these other conditions across the following 3 areas: (1) developmentally-oriented theories that underlie the research base for chronic physical conditions; (2) research designs and methodological features that have proved fruitful in these areas; and (3) the potential applicability to DSD of clinical management practices for youth with craniofacial conditions., (© Georg Thieme Verlag KG Stuttgart · New York.)

Objective: To study coping socialization longitudinally by examining reported and observed family environment and parenting variables in relation to children's problem-focused coping in a sample of 68 families of preadolescents with spina bifida and 68 matched able-bodied comparison families., Methods: Family environment and parenting variables were assessed with mother and father reports and observational measures. Children's problem-focused coping was self-reported., Results: Prospective analyses revealed that maternal responsiveness, paternal responsiveness, and family cohesion predicted an increase in children's use of problem-focused coping strategies, while change in paternal responsiveness and maternal responsiveness and demandingness was related concurrently to change in coping. Few group (spina bifida vs. able-bodied) or gender differences with respect to parenting and family influences on children's coping behaviors were found., Conclusions: Multimethod findings suggest that the quality of parenting and family environment is associated with children's problem-focused coping behaviors. We discuss clinical implications.

Objective: To examine relations between condition severity and psychosocial functioning in 70 8- and 9-year-old pre-adolescents with spina bifida by testing several direct, indirect, and mediated effects models for proximal functional status and distal adjustment outcomes., Methods: Proximal functional status outcomes (e.g., degree of involvement in activities, scholastic competence, athletic competence, attentional problems) and distal adjustment outcomes (e.g., behavior problems, social competence) were assessed with mother, father, and teacher report. Severity variables included spinal lesion level, spina bifida classification, shunt status, ambulation status, number of shunt surgeries, and two severity composites., Results: Condition severity was associated with the proximal functional status outcomes across parent and teacher report. In contrast, no significant relationships were found between the severity parameters and distal adjustment outcomes. Findings supported a proximal effects model of condition severity as well as an indirect effects model (e.g., presence of a shunt-->less scholastic competence-->less social competence) and were consistent with recent theoretical formulations (e.g., Wallander & Varni, 1995)., Conclusions: Disentangling proximal functional status outcomes and distal adjustment outcomes is critical in studies of condition severity and psychosocial functioning. We discuss clinical implications.

Based on a family systems/social-ecological perspective, mothers and fathers of 8- and 9-year-old children with spina bifida (n = 55; 28 male, 27 female) were examined in comparison to a matched group of parents with 8- and 9-year-old able-bodied children (n = 55; 29 male, 26 female) across several areas of functioning (individual, parental, and marital). Findings suggested that mothers and fathers in the spina bifida sample tended to report more psychosocial stress than their counterparts in the able-bodied sample. Specifically, mothers and fathers in the spina bifida group reported less parental satisfaction than parents in the able-bodied group. Mothers in the spina bifida group reported less perceived parental competence, more social isolation, and less adaptability to change; fathers in the spina bifida group reported more psychological symptoms. No differences between the spina bifida and able-bodied groups were found with respect to marital satisfaction. Coping predictors of adjustment tended to vary as a function of parent gender rather than group status.

Investigated whether family functioning and child psychosocial adjustment were associated with spinal lesion level and shunt status in 65 children and adolescents with spina bifida myelomeningocele (age range = 8-16). Mothers of children with higher lesion levels (i.e., thoracic level) reported more attachment to their children, less family conflict, and a greater willingness to grant autonomy to their offspring. Such findings support a "marginality" interpretation of the data, insofar as the least physically impaired children with spina bifida exhibited the greatest family difficulties. Based on maternal report, children with shunts performed more poorly in school and exhibited lower levels of cognitive competence than children without shunts. Findings are discussed in relation to literatures on neuropsychological functioning and psychosocial adjustment in children with spina bifida.