Contextual predictors of self-management and independence trajectories in adolescents and young adults with spina bifida.

AIM: To examine socioeconomic, condition-related, and neuropsychological predictors of self-management trajectories in adolescents and young adults with spina bifida. METHOD: In this longitudinal study, participants completed the Adolescent/Young Adult Self-Management and Independence Scale interview. Socioeconomic status (SES), shunt status, lesion level, and executive functioning were assessed. Growth in self-management was estimated using linear mixed-effects models. RESULTS: Participants (n = 99) were aged 18 to 27 years. Approximately half (52.5%) were female and White; 15.2% were Black; and 32.3% Hispanic or Latino. Although none of the predictors were associated with growth in self-management from ages 18 to 27 years (p > 0.05), several factors were associated with the intercept at age 18 years for total self-management. Higher SES at baseline predicted a higher total self-management score at age 18 years (b = 0.03, standard error [SE] = 0.01; p < 0.001). On average, participants at age 18 years with a shunt scored lower than those without a shunt (b = -0.90, SE = 0.32; p = 0.01); those with a thoracic lesion scored lower than those with lower lesion levels (lumbar: b = -1.22, SE = 0.34; sacral: b = -1.20, SE = 0.36; p = 0.001 for both). Better parent-reported and teacher-reported executive functions predicted higher total self-management (metacognitive: b = -0.03, SE = 0.01; behavioral regulation: b = -0.04, SE = 0.01; p < 0.05 for both). INTERPRETATION: On average, all participants improved in self-management over time. Additionally, baseline superiority in self-management for adolescents and young adults without a shunt, less severe lesions, better executive functions, and higher SES persisted over time.

Growth of condition-related knowledge among youth with spina bifida: associations with neurocognitive functioning and self-management skills.

OBJECTIVE: This study aims to characterize the growth in condition-related knowledge in youth with spina bifida (SB), identify neurocognitive predictors of growth, and examine associations between growth in knowledge and subsequent levels of medical self-management skills. METHODS: Participants were recruited from a larger longitudinal study involving 140 youth with SB and caregivers, who completed questionnaires and interviews every 2 years over 8 years. The current study included the youth report of condition-related knowledge and medical self-management skills. Youth attention and executive functioning were assessed via parent and teacher reports and performance-based assessment. Latent growth curves were conducted in Mplus Version 8 (Múthen, L. K., & Múthen, B. O. [1998]. Mplus User's Guide. [Eighth]. Muthén & Muthén) to examine change over time in youth-reported condition-related knowledge. Neurocognitive variables were included as predictors of growth in knowledge and regression analyses were used to predict medical self-management skills from growth in condition-related knowledge. RESULTS: Youth condition-related knowledge increased linearly. Better youth performance on working memory and attention performance-based tasks predicted a higher intercept for condition-related knowledge at T1, but not slope. Teacher and parent reports of inattention and executive dysfunction were not consistent predictors of intercept and growth. Slope of condition-related knowledge was not predictive of subsequent youth self-management skills. CONCLUSIONS: Youth with SB gain condition-related knowledge over time. However, executive dysfunction and inattention may impede gains in condition-related knowledge. Thus, executive functioning supports, attention-related interventions, and psychoeducation may support condition-related knowledge gains and later medical self-management skills, but further research assessing family and cultural factors is needed.

Inclusive measure development: amplifying the voices of adolescents and young adults with spina bifida in a new measure of benefit-finding and growth.

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.

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.

Adolescent/Young Adult Self-Management and Independence Self-Report Scale: Preliminary psychometric findings.

PURPOSE: This study examined preliminary psychometrics of the Adolescent/Young Adult Self-Management and Independence Self-Report Scale (AMIS II SR). METHODS: Adolescents and adults (N = 159; 13-38 years old) with spina bifida from two clinics and one community sample completed the AMIS II SR. The majority (83%) had myelomeningocele, and about half were female (51.6%). The sample included 44.7% White, 11.3% Black and over one-third Hispanic/Latino (38.4%) participants. Descriptive analyses and reliability were assessed; a confirmatory factor analysis (CFA) was conducted. RESULTS: Item-to-total correlations support the AMIS II SR total scale (r = .38-.79) and its two subscales: condition (r = .49-.67) and independent living (r = .49-.85). Internal consistency reliability was high (α = .91-.96) for the AMIS II SR total scale and subscales. A higher order CFA model that included independent living and condition self-management as first-order factors and a second-order overall self-management factor had excellent fit (RMSEA = 0.06; CFI = 0.97; TLI = 0.96). Descriptive analyses findings were reported. CONCLUSIONS: This study provides psychometric evidence for the use of the AMIS II SR total (overall) scale and subscales (condition and independent living) to assess self-management and independence.

Self-Management in Youth With Spina Bifida: Associations With Parent Factors in the Context of a Summer Camp Intervention.

OBJECTIVE: To investigate cross-sectional and longitudinal associations between parent factors and self-management for youth with spina bifida (SB). METHODS: Participants were 89 camper-parent dyads recruited for a summer camp program for youth with SB (Myouthage = 12.2 years); 48 of these families participated across 2 years. Campers and parents completed assessments at Time 1 (pre-camp) and Time 3 (post-camp) for one or two summers. Parents reported on demographics, their own adjustment, perceptions, attitudes, and behaviors, and youth condition-related responsibility and task mastery. Youth also reported on condition-related responsibility. Hierarchical multiple regression analyses and multilevel modeling were used to examine relationships between parent factors and youth self-management. RESULTS: Parents' expectations for future goal attainment were positively associated with camper responsibility and task mastery, and these associations were moderated by camper age (only significant for older campers). When examining changes over one summer, parental expectations for the future were significantly associated with changes in campers' condition-related task mastery. When examining trajectories across summers, parental perception of child vulnerability was negatively associated with the slope of condition-related responsibility and parents' expectations for future goal attainment were positively associated with the slope of task mastery. CONCLUSIONS: Parent perceptions and behaviors may be important targets for assessment and intervention when promoting condition-related independence for youth with SB.

Comparing Cognitive Disengagement Syndrome Growth in Youth With and Without Spina Bifida.

OBJECTIVE: Cognitive disengagement syndrome (CDS; formally known as sluggish cognitive tempo), difficulties with social engagement, and lower levels of autonomy have been identified as maladaptive comorbidities in youth with spina bifida (SB). This study compared growth curves of CDS for youth with and without SB and examined whether these trajectories were associated with later functioning. METHODS: Longitudinal data spanning 8 years included youth with SB (n = 68, Mage = 8.34) and a demographically matched sample of typically developing (TD) peers (n = 68, Mage = 8.49). Adolescents, along with their caregivers and teachers, reported on youth social skills, behavioral functioning, and CDS. Growth curve models were examined by comparing CDS trajectories by SB status. RESULTS: Growth curves indicated that youth with SB had higher levels of teacher-reported CDS at ages 8 and 9, but growth curves were relatively stable for both groups. When predicting social skills, higher levels of teacher-reported (but not mother-reported) CDS at baseline predicted worse social functioning for both youth with and without SB in adolescence. For the slope findings, higher rates of mother-reported CDS over time predicted worse social skills (ß = -0.43) and lower levels of youth decision-making (ß = -0.43) for the SB group, while higher rates of teacher-reported CDS predicted worse social skills for the TD group. CONCLUSION: Next steps include understanding the impact that impaired social functioning and restricted autonomy have on youth with and without SB due to CDS to inform interventions. Additionally, advocacy for increased awareness of CDS-related impairment is needed, particularly for youth with chronic health conditions.

Caregiver Expressed Emotion in Families of Youth With Spina Bifida: Demographic, Medical, and Family Correlates.

OBJECTIVE: Caregiver expressed emotion (EE), an interview-based measure of emotional valence within an interpersonal relationship, is associated with psychosocial outcomes across multiple conditions. Guided by a model implicating a bidirectional role of "Chronic Family Stress" in the unfolding of EE in family environments, the current study examined demographic, medical, and family-level variables in association with EE in caregivers of children with spina bifida (SB). METHODS: Data were combined from 2 distinct studies of families with a child with SB, resulting in a sample of 174 (ages 8-17). Linear regressions examined the family stressors and child variables in association with maternal and paternal warmth and criticism, as coded from EE interviews. RESULTS: Higher levels of family stress were associated with paternal criticism (p = .03), while having non-Hispanic White children was associated with both maternal and paternal criticism (ps < .005). Having children younger in age (ps < .01) and without a shunt (ps < .01) was associated with higher warmth. CONCLUSIONS: Family stressors, absence of the negative impacts of systemic racism, shunt status, and age appear to be associated with the expression of EE in caregivers of a child with SB. Findings highlight multiple assessment considerations, including assessing EE when children are younger to engage caregivers with children with SB when they are more likely to be expressing more warmth. Pinpointing factors associated with caregiver EE in SB will help to better identify families at risk for high levels of criticism and also aid in the development of targeted prevention and intervention programs.

Trajectories of self-management and independence in youth with spina bifida: Demographic predictors of growth.

AIM: The purpose of this study was to examine the trajectories of condition and independent living self-management in youth with spina bifida (SB). METHODS: A diverse sample of adolescents and young adults (AYAs) with SB completed the Adolescent/Young Adult Self-Management and Independence Scale (AMIS-II) across four time points. Parents reported on demographic characteristics including age, sex, race/ethnicity, and family income. Growth in self-management and its subscales (condition and independent living) were estimated using linear mixed-effect models as a function of respondents' demographics. RESULTS: This study included 99 respondents age 18 to 27 years old. About half were female (52.5%) and White (52.5%); 15.2% were Black, and about a third were Hispanic/Latino (32.3%). Eighty-seven AYAs (87.9%) had myelomeningocele. The lesion level was 31.3% sacral, 48.5% lumbar and 18.2% thoracic. A third of the families earned less than 50K. Overall, self-management growth was dependent on age, sex, and race/ethnicity, but not income. Growth in condition self-management depended on sex; only males demonstrated increasing growth ( ß Ì‚ = 0.11, p < 0.001). Black participants endorsed higher increasing total and condition self-management when compared with White ( ß Ì‚ diff = 0.17 and 0.17, respectively, both p < 0.05) and Hispanic/Latino ( ß Ì‚ diff = 0.18 and 0.21, respectively, both p = 0.02) respondents. CONCLUSION: This study provides evidence of differences in growth of self-management by demographic/social determinants of health. Possible reasons for differences are discussed. Predictors of changes in self-management behaviours over time in young adults with SB can identify subgroups in need of further study.

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

PURPOSE: Clean intermittent catheterization (CIC) responsibility among youths with spina bifida is not well studied. We sought to determine longitudinal trajectories of CIC responsibility to examine the transition of CIC responsibility from caregiver-CIC to self-CIC. MATERIALS AND METHODS: We performed a secondary analysis of a prospective cohort study of youths with spina bifida. Participants aged 8-15 years originally recruited from 4 hospitals and a statewide spina bifida association were followed every 2 years. Participants who required CIC were included. Group-based trajectory modeling was used to isolate distinct trajectories of CIC responsibility, which was the primary outcome and was graded from caregiver-CIC to shared-CIC to self-CIC. Predictors of trajectory group membership were entered into multivariate logistic regression models and included various demographic, clinical and psychosocial characteristics such as CIC adherence and CIC mastery. RESULTS: Of 140 youths in the original cohort study, 89 met eligibility criteria for this study. Mean age was 11 years at enrollment and 93% of patients had myelomeningocele. Two distinct trajectory groups emerged: 17% of patients had a low-flat trajectory and 83% had a high-increasing trajectory of CIC responsibility, with shared-CIC by age 8-9 years and increasing self-CIC responsibility thereafter. Significant predictors of group membership in the high-increasing trajectory group included less severe spinal lesion levels, higher CIC mastery and lower CIC adherence. CONCLUSIONS: Nearly 1 in 5 youths with spina bifida in our cohort persistently required caregiver-CIC over time, while the remainder achieved shared-CIC responsibility by age 8-9 years, with increasing self-CIC responsibility thereafter.

The Association of Health Literacy with Health-Related Quality of Life in Youth and Young Adults with Spina Bifida: A Cross-Sectional Study.

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.

Trajectories of Marital Satisfaction among Parents of Youth with Spina Bifida.

OBJECTIVE: This study examined marital satisfaction among parents of youth with spina bifida (SB) over an 8-year period and investigated the usefulness of the double ABCX model for understanding factors that predict change in marital satisfaction across child age. METHODS: Data from five time points of a longitudinal investigation of psychosocial outcomes in youth with SB were included. Mothers and fathers of children with SB (aged 8-17) reported on marital satisfaction and components of the double ABCX model. Change in marital satisfaction was examined across child age with components of the double ABCX model, as well as interactions between components, as predictors. RESULTS: Marital satisfaction was significantly higher in the present sample than in a normative sample of married couples. Although there were no significant changes in marital satisfaction for either parent as a function of child age, there was significant variability for the intercept and slope of maternal and paternal marital satisfaction within the sample. Family support predicted a higher intercept, and mental health symptoms predicted a lower intercept, for maternal and paternal marital satisfaction. More stressors and SB-related family stress predicted a lower intercept for paternal marital satisfaction. Family support and family stress attributed to SB moderated the relationship between child vulnerability and maternal marital satisfaction. Observed family cohesion and child psychosocial quality of life moderated the relationship between family stressors and paternal marital satisfaction. CONCLUSION: Findings demonstrate the usefulness of the double ABCX model for this population.

Parents' school-related concerns and perceived strengths in youth with spina bifida.

BACKGROUND: Although the academic difficulties of children with spina bifida (SB) are well-documented, there is limited literature on parents' views of their children's school experiences and school-related supportive services. Thus, the current study examined parents' school-related concerns, as well as perceived areas of strength, among children with SB. METHODS: Using a mixed-methods approach, 30 families (29 mothers and 19 fathers) of children with SB (ages 8-15 years) completed questionnaires and interviews. Content analysis was used to generate themes from interview data about parents' school-related concerns and perceptions of their child's strengths. RESULTS: Overall, six themes emerged when assessing both parents' concerns and perceived strengths. Some parents did not endorse school concerns or strengths for their child. However, other parents described concerns related to academic performance, cognitive abilities, lack of school support, missed school and/or class time and disengagement, as well as strengths such as academic skills, cognitive abilities, persistence, self-advocacy and agreeableness. Despite parents' concerns about their children's academic performance, quantitative data revealed that less than 50% of children had received a neuropsychological evaluation and/or academic accommodations; additional quantitative data supported the qualitative findings. CONCLUSIONS: The mixed-methods approach used in this study provides a richer understanding of parents' experiences in the school setting when they have a child with SB. Results can inform clinical practice, identifying a need to improve academic support for children with SB and help parents manage education-related stressors.

Factor Structure of Medical Autonomy Scales in Young People with Spina Bifida.

OBJECTIVE: The primary goal of this study was to examine the factor structure of a spina bifida (SB) medical responsibilities measure and a medical regimen skills scale across time in families of youth with SB. METHOD: One-hundred and forty youth with SB and their parents were assessed in both childhood/adolescence and adolescence/young adulthood. The Sharing of SB Medical Responsibilities Scale (SOSBMR) includes 34 items for which participants indicate who is responsible for each task. The SB Independence Survey (SBIS) is composed of 50 SB-specific medical skills items in yes-no format. Confirmatory factor analyses (CFA) were conducted to examine the factor structure of the SOSBMR and SBIS in childhood and adolescence (ages 8-15) and in adolescence/young adulthood (AYA; ages 16-25). RESULTS: One- and seven-factor CFAs were compared for both measures. For the SBIS, both mother- and father-report were used in childhood; self-report was employed for AYA. For the SOSBMR, only self-report was used for both age groups. Across each rater and time point, the seven-factor models of the SBIS and SOSBMR had adequate to excellent fit and reliability, indicating the ability to use each subscale. In addition, each of the corresponding subscales on the SOSBMR and SBIS were associated with each other across raters and time, showing good concurrent and predictive validity. CONCLUSIONS: From childhood to young adulthood, the subscales of the SOSBMR can be used to examine responsibility across multiple medical tasks and the SBIS can be used to assess medical regimen skills and mastery in young people with SB.

Cross-Lag Model of Medical Responsibility and Skills in Youth With Spina Bifida.

OBJECTIVE: This study examined bidirectional associations between mother- and father-reported medical responsibility and medical skill mastery in youth with spina bifida (SB). METHODS: Participants were 140 youth with SB and their parents who participated in three waves of a longitudinal study across four years (ages 8-15 years at Time 1). Mother- and father-report of both medical responsibility and medical skill mastery were used, and age and estimated intelligence quotient were included as covariates, in cross-lagged models. RESULTS: The cross-lagged model provided evidence for significant bidirectional associations between mother-reported medical responsibility and skill mastery across time (root mean square error of approximation=0.09, comparative fix index=0.97). These paths showed that higher levels of child responsibility predicted an increase in skill mastery and that higher levels of mastery predicted an increase in child responsibility across time. Moreover, based on mother-report, sharing of responsibility had stronger effects on increases in skill mastery (Time 1 to Time 2 ß=.25, Time 2 to Time 3 ß=.27) than skill mastery had on increases in child responsibility (Time 1 to Time 2 ß=.08, Time 2 to Time 3 ß=.07). The only significant cross-lagged path for father-report was from Time 1 skill mastery to Time 2 responsibility (ß=.34). CONCLUSIONS: Mothers perceive a bidirectional relationship between responsibility and skill mastery across time, whereas fathers appear to mainly consider how skills might affect a subsequent increase in responsibility sharing. Thus, it is important to consider both parents' perspectives when working to increase medical autonomy in youth with SB.

Discrepancies in Parent Perceptions of Child Vulnerability in Youth With Spina Bifida.

OBJECTIVE: This study aimed to describe informant discrepancies between mother and father reports of child vulnerability in youth with spina bifida (SB) and examine variables that were associated with these discrepancies. METHODS: Ninety-two parent dyads, with a child with SB (ages 8-15 years), were recruited as a part of a longitudinal study. Mothers and fathers completed questionnaires assessing parental perception of child vulnerability (PPCV), as well as medical and demographic information, behavioral aspects of the couple relationship, parenting stress, mental health of the parent, and child behavioral adjustment. The degree to which there was a parenting alliance was assessed with observational data. Mother-father discrepancies were calculated at the item level. RESULTS: Findings revealed that greater father mental health symptoms, parenting stress, and child behavior problems were associated with "father high and mother low" discrepancies in PPCV. There were also lower scores on observed parenting alliance when there were higher rates of "father high and mother low" discrepancies in PPCV. CONCLUSIONS: For families of youth with SB, discrepancies in PPCV where fathers perceive high vulnerability and mothers perceive low vulnerability may be a "red flag" for the presence of other parental and child adjustment difficulties. Findings are discussed in terms of the Attribution Bias Context Model and underscore the importance of including fathers in research on families who have children with chronic health conditions.

"We Are Anxious Every Day": COVID-19 Impacts on Youth with Spina Bifida.

OBJECTIVE: This study examined the impact of the COVID-19 pandemic on a national sample of adolescents and young adults (AYA) with spina bifida (SB) and parents of youth with SB. METHODS: AYA with SB (15-25; n = 298) and parents of children with SB (n = 200) were recruited to complete an anonymous, online survey in English or Spanish. Participants provided information about demographic and condition characteristics, as well as their technology access and use for behavioral health care. They also completed the COVID-19 Exposure and Family Impact Survey (CEFIS), which includes Exposure, Impact, and Distress subscales. Exploratory correlations and t-tests were used to examine potential associations between CEFIS scores and demographic, medical, and access characteristics. Qualitative data from the CEFIS were analyzed using thematic analysis. RESULTS: Scores on the Exposure, Impact, and Distress subscales demonstrated significant variability. Demographic associations with Exposure differed for those with higher Impact and Distress (e.g., White, non-Hispanic/Latino AYA reported higher rates of exposure [p = .001]; AYA who identified with a minoritized racial/ethnic identity reported greater impact [p ≤ .03]). Impacts to mental and behavioral health (n = 44), interference with medical care (n = 28), and interpersonal challenges (n = 27) were the most commonly occurring qualitative themes. CONCLUSIONS: The current findings implicate differential impacts to individuals with SB and their families based on demographic, medical, and systemic factors (e.g., minoritized status). Recommendations to support families with SB and other pediatric conditions are made.

Social Skills and Medical Responsibility Across Development in Youth With Spina Bifida.

OBJECTIVE: To examine the predictive role of social skills in youth with spina bifida (SB) on growth in medical responsibility across development. METHODS: As part of a larger, longitudinal study, 140 youth with SB were assessed across four time points (ages 8-22 across time points). Mixed-effects models were investigated for change with: (a) no predictors (i.e., change in medical responsibility across age; time was examined using the participant's age, centered at 11.5 years); (b) social variables (i.e., observed social behaviors, parent- and teacher-reported social skills) as predictors; and (c) social variables as predictors with intelligence quotient, lesion level, and sex as covariates. RESULTS: Significant growth with age was identified for medical responsibility (p < .0001). Observed, parent-reported, and teacher-reported social skills did not significantly predict this growth; however, all three predicted the intercept for medical responsibility at 11.5 years of age (ps ≤ .047). Parent-reported social skills remained a significant predictor of the intercept at 11.5 years of age when including the covariates (p = .008). CONCLUSIONS: Children with SB who exhibited more positive social skills were more likely to a have higher level of medical responsibility in late childhood, but higher levels of social skills were not associated with a more rapid increase in responsibility over time. Identifying existing social strengths and promoting the practice of prosocial skills may have additional benefits to children with SB, including their acquisition of medical responsibility.

A Systematic Review of Benefit-Finding and Growth in Pediatric Medical Populations.

OBJECTIVE: This review synthesizes the literature on benefit-finding and growth (BFG) among youth with medical illnesses and disabilities and their parents. Specifically, we summarized: (a) methods for assessing BFG; (b) personal characteristics, personal, and environmental resources, as well as positive outcomes, associated with BFG; (c) interventions that have enhanced BFG; and (d) the quality of the literature. METHODS: A medical research librarian conducted the search across PubMed, Scopus, PsycInfo, Google Scholar, and Cochrane Library. Studies on BFG among children ages 0-18 with chronic illnesses and disabilities, or the parents of these youth were eligible for inclusion. Articles were uploaded into Covidence; all articles were screened by two reviewers, who then extracted data (e.g., study characteristics and findings related to BFG) independently and in duplicate for each eligible study. The review was based on a systematic narrative synthesis framework and adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines (PROSPERO registration number: CRD42020189339). RESULTS: In total, 110 articles were included in this review. Generally, BFG capabilities were present across a range of pediatric health conditions and disabilities. Correlates of both youth and parent BFG are presented, including personal and environmental resources, coping resources, and positive outcomes. In addition, studies describing interventions aimed at enhancing BFG are discussed, and a quality assessment of the included studies is provided. CONCLUSIONS: Recommendations are provided regarding how to assess BFG and with whom to study BFG to diversify and extend our current literature.

The Transition to Adult Health Care in Youth With Spina Bifida: Theory, Measurement, and Interventions.

PURPOSE: This article focuses on the transition to adult health care in youth with spina bifida (SB) from the perspective of theory, measurement, and interventions. METHODS: The purpose of this article is to discuss (a) a theory of linkages between the transfer of medical responsibility from parent to child and the transition from pediatric to adult health care, as mediated by transition readiness; (b) measurement issues in the study of self-management and the transition to adult health care; and (c) U.S.-based and international interventions focused on the transition to adult health care in young adults with SB. FINDINGS: Individuals with SB must adhere to a complex multicomponent treatment regimen while at the same time managing a unique array of cognitive and psychosocial challenges and comorbidities that hinder self-management, medical adherence, and the transition to adult health care. Moreover, such youth endure multiple transitions to adult health care (e.g., in the areas of urology, orthopedics, neurosurgery, and primary care) that may unfold across different time frames. Finally, three transition-related constructs need to be assessed, namely, transition readiness, transition completion, and transition success. CONCLUSIONS: SB provides an important exemplar that highlights the complexities of conducting research on the transition to adult health care in youth with chronic health conditions. Many transition trajectories are possible, depending on the functioning level of the child and a host of other factors. Also, no single transition pathway is optimal for all patients with SB. CLINICAL RELEVANCE: The success of the process by which a child with SB transitions from pediatric to adult health care can have life-sustaining implications for the patient.