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.

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.

"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.

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.

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

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.

The Transition from Pediatric to Adult Health Care in Young Adults with Spina Bifida: Demographic and Physician-Related Correlates.

OBJECTIVE: This study examined the transition to adult health care for individuals with spina bifida (SB) and explored demographic and relational associations with transition status. METHOD: Young adults with SB (18-30; n = 326) were recruited to complete an anonymous, online survey. Frequencies of reported experiences, behaviors, and satisfaction with the transition to adult health care were examined. Nonparametric tests and exploratory hierarchical regressions were used to examine demographic and relational factors with physicians between those (1) who had and had not yet transitioned and (2) who did and did not return to pediatric care. RESULTS: Most of the sample reported having transitioned to adult health care, with three-quarters reporting that their primary physician is an adult primary care doctor. Individuals who had transitioned were more likely to be younger (p = 0.01) and to not have a shunt (p = 0.003). Beyond the effect of age and shunt status, relational factors with pediatric providers were not associated with transition (p > 0.1). After transition, over one-third reported returning to a pediatric provider. Those who did not return to pediatric care were more likely to have myelomeningocele, be a full-time student, and to not have a shunt (p < 0.001). Beyond the effect of age and shunt status, lower ratings of communication with adult providers were associated with a return to pediatric care (p = 0.04). CONCLUSION: The results highlight the need for additional research about barriers and facilitators to the transition to adult health care to target interventions that support this critical milestone in young adults with SB.

[Formula: see text]Neurocognitive predictors of adaptive functioning trajectories among youth with spina bifida.

Little is known about how youth with spina bifida (SB) acquire adaptive functioning skills across development. Therefore, the current study examined: (1) trajectories of adaptive functioning in youth with SB as they transitioned from childhood into adolescence, and (2) neuropsychological functioning as a potential risk factor for long-term adaptive functioning difficulties. Participants (n = 131 youth with SB) were recruited as part of a larger ongoing longitudinal study. Growth curves were used to examine changes over time across six adaptive functioning skills: communication, self-direction, functional academics, social, self-care, and home living skills. Additionally, youth's attention and executive functioning (i.e., working memory, planning/organizational skills, cognitive flexibility, inhibition) were assessed via questionnaires and performance-based assessments, and entered as predictors in the models. Youth's communication, self-direction, functional academics, self-care, and home living skills increased over time across age, whereas youth's social skills did not. Scaled scores for youth's social, communication, self-direction, and functional academics skills were generally within normal limits, whereas those for self-care and home living skills fell in the borderline range. Better attention and executive functioning predicted a higher intercept for many adaptive functioning abilities at 11.5 years old, above and beyond the influence of IQ. However, these variables did not predict growth in adaptive functioning. Results indicate that youth with SB acquire skills across development to better meet the demands of daily life. However, youth with poorer neurocognitive functioning may demonstrate adaptive functioning deficits in early childhood and benefit from timely intervention.

Stress and Coping in Youth With Spina Bifida: A Brief Longitudinal Study in a Summer Camp Setting.

INTRODUCTION: It is well established that youth with chronic conditions experience elevated levels of stress; the manner in which they respond to or cope with this stress is likely to impact both health and psychosocial outcomes. The current study examined stress and coping in youth and young adults with spina bifida (SB) using the response to stress questionnaire-SB version (RSQ-SB; Connor-Smith et al., 2000). METHODS: Data were collected as part of a camp-based psychosocial intervention for children (ages 7-13), adolescents (ages 14-19), and young adults (ages 20-38) with SB. Participants completed the RSQ-SB as well as questionnaires assessing demographics and condition severity. Data were collected prior to camp (T1) and 1 month (T2) after camp ended. Self-report data were collected from adolescents and young adults; parents of children and adolescents reported on their child's stress and coping. Ratios of primary control coping, secondary control coping, disengagement coping, involuntary engagement, and involuntary disengagement coping were calculated. Descriptive statistics and t-tests were utilized to describe coping and stress responses and to determine potential change over time. T-tests were also used to compare youth and parent reported coping styles with those of youth with type 1 diabetes (T1D) and sickle cell disease (SCD). Associations between demographic/disease factors and coping styles were also examined. RESULTS: Parent and youth report indicated that youth with SB tend to use primary control coping. Youth with SB use more primary control coping and less disengagement coping compared to youth with SCD and youth with T1D. Few significant changes in coping were found between T1 and T2. IQ and socioeconomic status were significantly associated with coping styles. CONCLUSION: Youth with SB use more primary control coping compared to other coping methods and as compared to other pediatric populations. Future studies should examine mechanisms by which primary control coping is advantageous for youth with SB. Future interventions should be more focused on promoting adaptive coping behaviors and be tailored to developmental age and access to resources.

Technology usage and barriers to the use of behavioral intervention technologies in adolescents and young adults with spina bifida.

PURPOSE: The majority of behavioral intervention technologies (BITs) have been designed and targeted towards the general population (i.e., typically-developing individuals); thus, little is known about the use of BITs to aid those with special needs, such as youth with disabilities. The current study assessed adolescents and young adults with spina bifida (AYA-SB) for: 1) their technology usage, and 2) anticipated barriers to using technology to help manage their health. METHODS: AYA-SB completed a survey of their media and technology usage. A card sorting task that ranked and grouped anticipated barriers to using a mobile app to manage health was also completed. Ranked means, standard deviations, and the number of times a barrier was discarded were used to interpret sample rankings. RESULTS: AYA-SB reported less frequent technology and media use than the general population. However, differences emerged by age, with young adults endorsing higher usage than their younger counterparts. Top concerns focused on usability, accessibility, safety, personal barriers due to lack of engagement, technological functioning, privacy, and efficacy. CONCLUSIONS: AYA-SB appear to be selective users of technology. It is therefore critical that the design of BITs address their concerns, specifically aiming to have high usability, accessibility, and engagement.

Longitudinal associations between neuropsychological functioning and medical responsibility in youth with spina bifida: The moderational role of parenting behaviors.

For youth with spina bifida (SB), the transfer of medical responsibilities from parent- to self-management is an important component of autonomy development. Youth with SB are at risk for neurocognitive impairments with inattention and executive dysfunction, which may impact their ability to take responsibility for medical tasks. However, adaptive parenting may buffer against the negative impact of executive/attentional dysfunction on levels of medical responsibility. Thus, this study examined the moderating roles of parenting behaviors and child age on the longitudinal associations between neuropsychological functioning and medical responsibility in youth with SB. Participants were recruited as part of a larger, longitudinal study. Youth with SB (N = 89, Mage = 11.10 years) completed a neuropsychological battery of executive functioning and attention measures at Time 1 (T1). Parents reported on youth's executive functioning/attention skills at T1, and child medical responsibility two years later at Time 2 (T2). Observational methods were used to assess parenting behaviors (warmth, behavioral and psychological control) at T1. Attention and cognitive shifting skills at T1 were positively related to child medical responsibility at T2. Two-way interactions between planning/organizing skills and paternal acceptance, and planning/organizing skills and paternal psychological control, were found. A three-way interaction between cognitive shifting skills, maternal acceptance, and child age was found. When conceptualizing risk factors for low medical responsibility in youth with SB, it is important to consider the family context beyond individual, cognitive factors. The results are discussed within the wider context of social-ecological models of medical responsibility.

Cultural Considerations for Autonomy and Medical Adherence in a Young Palestinian American Muslim Female With Spina Bifida: A Longitudinal Case Study in a Research Context.

This case study examines the unique presentation of a young Palestinian-American Muslim female, who is a part of an ongoing longitudinal study examining family and peer relationships, psychological adjustment, and neuropsychological functioning in youth with spina bifida. Throughout ten years of data collection, Palestinian-Arab culture and Islamic faith have consistently emerged as important factors that can be considered when interpreting this participant's general level of autonomy, medical autonomy, medical adherence, and psychological adjustment. This case study examines important aspects of adaptive and independent functioning for youth with spina bifida and how this family's culture interacts with these different domains of functioning. Moreover, it explores potential conflicts between an Arab collectivist family structure and Western biomedical ethics and suggests how clinicians might navigate these conflicts and bolster culturally-rooted strengths of families and patients from non-Western backgrounds.