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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: To evaluate associations among parent-child behaviors and generic and diabetes-specific health-related quality of life (HRQOL) in a multi-site sample of youth with type 1 diabetes., Method: One hundred and twenty-one youth and their primary caregivers completed measures of parent-child behaviors, child HRQOL, and participated in an observed family interaction task., Results: Diabetes-specific parent-child variables were associated significantly with both generic and diabetes-specific HRQOL above and beyond the contributions of demographic and generic parent-child variables, accounting for between 13% and 31% of the variance in HRQOL. Diabetes-specific family conflict and negative diabetes-specific family communication were associated with lower HRQOL. Collaborative parent involvement in diabetes care was associated with higher levels of HRQOL., Conclusions: Interventions that target diabetes-specific family interactions will be beneficial to the quality of life of children with type 1 diabetes.

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.

Intelligence and achievement test scores for 89 children with myelomeningocele (MM), ages 4 to 14 years, were obtained from medical records. These children scored below the population average but within the normal range on most tests. The greatest deficits occurred on Performance IQ, arithmetic achievement, and visual-motor integration (copying geometric designs). With increasing age, these children fell further behind age-peers on tests of arithmetic and visual-motor performance while keeping pace on reading and spelling tests. We speculate that these findings may reflect a developmental difference between MM children and nonhandicapped children in a visual-perceptual-organizational cognitive function such as Rourke (1987) has proposed.

Conducted chart review study of 114 4- to 14-year-olds hospitalized for elective surgery to investigate analgesic medication patterns. Correcting for body weight and different drug potencies, correlations were examined between analgesics, child age, painfulness of recovery, and seriousness of surgical procedure. Weight-adjusted analgesics prescribed and delivered PRN were unrelated to painfulness of procedure and age. Expert ratings of the seriousness of anticipated sequelae were found to be a modest but significant predictor of analgesics. Results suggest that PRN prescription of analgesics in children essentially guarantees very low drug delivery without achieving individualized pain management. Possible interpretations and suggestions for research into effects of practitioner attributions of seriousness on clinical decision making are discussed, along with implications for other explanations of inadequate analgesic practices.