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.

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.

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.

Development of an Observational Parental Scaffolding Measure for Youth with Spina Bifida.

OBJECTIVE: To examine the reliability and validity of a new observational measure of parental scaffolding, as well as the impact of parental scaffolding on academic and social outcomes among youth with spina bifida (SB). METHODS: As part of a larger study, 137 families of youth with SB participated in family interaction tasks and self-report questionnaires at the baseline assessment. Teachers also reported on youth's academic independence and competence, as well as social skills. Guided by previous research and theoretical formulations, a rational approach to measure development was employed whereby maternal and paternal scaffolding composites were created using the Family Interaction Macro-coding System (Holmbeck, Zebracki, Johnson, Belvedere, & Hommeyer (2007). Parent-child interaction macro-coding manual. Unpublished coding system. Chicago: Loyola University Chicago). RESULTS: The scaffolding measure demonstrated acceptable interrater and scale reliabilities. Additionally, both the maternal and paternal scaffolding composites were significantly associated with scores from self-report questionnaires of parenting behaviors in the expected directions. Maternal scaffolding was positively associated with IQ, academic competence, academic independence, and social self-control in youth with SB, whereas paternal scaffolding was positively associated with social cooperation and social self-control. Differences in scaffolding emerged between mothers and fathers, as well as across demographic variables. CONCLUSION: Initial findings support the use of the scaffolding measure. Future research should continue to examine the utility of this scaffolding measure in families of youth with SB.

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.

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.

Camp-based psychosocial intervention dosage and changes in independence in young people with spina bifida.

AIM: To examine associations between camp-based intervention dosage and changes in independence-related skills for young people with spina bifida. METHOD: Participants were 110 individuals (mean age [SD] 14y 7mo [6y 1mo], range 6-32y; 66 females, 54 males) who attended a summer camp for individuals with spina bifida between 2 to 6 times (mean 2.40; operationalized as 'dosage'). Parents of young campers (e.g. those <18y) also participated in data collection. Campers and/or parents completed preintervention measures assessing campers' level of medical responsibility, mastery over medical tasks, and social skills. Outcomes included change in preintervention scores from dose 1 to final dose. RESULTS: Hierarchical regression analyses with and without covariates (age, IQ, and lesion level at dose 1) revealed that increased dosage was significantly associated with greater parent-reported improvements in campers' medical responsibility and mastery over medical tasks. Increased dosage was also significantly associated with camper-report of increased medical responsibility, but this relationship was no longer significant when including covariates. Intervention dosage was not associated with changes in campers' social skills. INTERPRETATION: Repeated participation in a camp-based intervention was associated with improvements in condition-related independence. Future work may focus on the development of interventions to promote improvements in social skills for young people with spina bifida. WHAT THIS PAPER ADDS: Participating in an intervention over multiple summers is associated with increases in campers' responsibility for spina bifida-related tasks. Repeated summer camp intervention participation is associated with improved mastery over condition-related tasks for campers with spina bifida. Repeated camp intervention participation is not associated with changes in social skills for campers with spina bifida.

DOSIS DE INTERVENCIÓN PSICOSOCIAL EN CAMPAMENTOS RECREATIVOS Y CAMBIOS EN LA INDEPENDENCIA EN JÓVENES CON ESPINA BÍFIDA: OBJETIVO: Examinar las asociaciones entre la dosis de intervención recibidas en campamentos recreativos y los cambios en las habilidades relacionadas con la independencia de los jóvenes con espina bífida. MÉTODO: Los participantes fueron 110 individuos (edad media [DS] 14 años 7 meses[6y 1 mes], rango 6-32 años; 66 mujeres, 54 varones) que asistieron a un campamento de verano para personas con espina bífida, con una frecuencia entre 2 a 6 veces (media 2,40; considerada como 'dosificación' de la intervención). Los padres de los jóvenes que concurrieron a los campamentos (por ejemplo, aquellos con <18 años) también participaron en la recopilación de datos. Los participantes y / o los padres completaron las escalas previas a la intervención evaluando el nivel de responsabilidad sobre su salud de los participantes, el dominio sobre las tareas sanitarias y las habilidades sociales. Los resultados incluyeron cambios en las puntuaciones preintervención de la primera dosis a la última dosis. RESULTADOS: Los análisis de regresión jerárquica con y sin covariables (edad, coeficiente intelectual y nivel de lesión) revelaron que el aumento de la dosis se asoció significativamente con mayores mejoras informadas por los padres en la responsabilidad sobre su salud de los participantes y el dominio sobre las tareas sanitarias. El aumento de la dosis también se asoció significativamente con el informe de instructores reportando mayor responsabilidad sobre su propia salud, pero esta relación ya no fue significativa al incluir las covariables. La dosis de la intervención no se asoció con cambios en las habilidades sociales de los participantes INTERPRETACIÓN: La participación repetida en una intervención recibida en el campamento se asoció con mejoras en la independencia relacionada con la condición de salud. El trabajo futuro podría centrarse en el desarrollo de intervenciones para promover mejoras en las habilidades sociales de los jóvenes con espina bífida.

DOSAGEM DE INTERVENÇÃO PSICOSSOCIAL BASEADA EM ACAMPAMENTO E MUDANÇAS NA INDEPENDÊNCIA DE JOVENS COM ESPINHA BÍFIDA: OBJETIVO: Examinar associações entre dosagem de intervenção baseada em acampamento e mudanças nas habilidades relacionadas à independência para jovens com espinha bífida. MÉTODO: Participaram 110 indivíduos (idade média [desvio padrão] 14 anos e 7 meses [6 anos e 1 mês], 66 mulheres e 54 homens) que participaram do acampamento de verão para indivíduos com espinha bífida entre 2 e 6 vezes (média de 2,40; operacionalizado como `dosagem`). Os pais de jovens campistas (por exemplo, os <18 anos) também participaram da coleta de dados. Campistas e/ou pais completaram medidas de pré-intervenção avaliando o nível de responsabilidade médica dos campistas, domínio sobre tarefas médicas e habilidades sociais. Os resultados incluíram a mudança nos escores pré-intervenção da dose 1 para a dose final. RESULTADOS: Análises de regressão hierárquica com e sem covariáveis (idade, QI e nível de lesão na dosagem 1) revelaram que o aumento da dosagem foi significativamente associado a maiores melhorias relatadas pelos pais na responsabilidade médica dos campistas e no domínio de tarefas médicas. O aumento da dosagem também foi significativamente associado ao relato por parte do campista de maior responsabilidade médica, mas essa relação não era mais significativa quando se incluíam covariáveis. A dosagem de intervenção não foi associada a mudanças nas habilidades sociais dos campistas. INTERPRETAÇÃO: A participação repetida em uma intervenção baseada em acampamento foi associada a melhorias na independência relacionada à condição. Trabalho futuro pode se concentrar no desenvolvimento de intervenções para promover melhorias nas habilidades sociais para jovens com espinha bífida.

Friendship Quality Over Time in Youth With Spina Bifida Compared to Peers.

OBJECTIVE: Examine friendship qualities (i.e., control, prosocial skills, positive affect, support, companionship, conflict, help, security, and closeness) and perceived self-efficacy in friendships of children with spina bifida (SB) and chosen peers over time through observed behaviors and self-report. METHODS: Families of children with SB (aged 8-15) were asked to invite the child's "best friend" to participate in-home assessment visits; 127 friendship dyads were included in the current study. Mixed-effects models were used to examine children with SB and their peers across age on observed behaviors and self-reported data about their friendships. RESULTS: For observed behaviors, peers displayed more control (p = .002) and prosocial behaviors (p = .007) with age than youth with SB. Male peers displayed higher control in their interactions as they aged (p = .04); and males with SB maintained their level of prosocial behaviors with age, compared to an increase in prosocial behaviors with age for all other groups (p = .003). For self-reported data, there was no evidence to suggest significant differences in friendship qualities across age (ps ≥ .2), with the exception of increased help (p = .002). Female peers reported increases in companionship across age compared to the other groups (p = .04). CONCLUSIONS: Differing from previous examinations of social characteristics in SB, most longitudinal trends in friendship qualities did not differ for youth with SB compared to their peers. Promotion of this existing social strength may be a key intervention target for future strategies that promote positive outcomes for youth with SB.

A Systematic Review of Behavioral Intervention Technologies for Youth With Chronic Health Conditions and Physical and Intellectual Disabilities: Implications for Adolescents and Young Adults With Spina Bifida.

OBJECTIVE: Behavioral intervention technologies (BITs) stand as a promising delivery mechanism that overcomes multiple condition-specific and access barriers for self-management interventions for adolescents and young adults with spina bifida (AYA-SB). The purpose of the current review was to synthesize the behavioral and self-management intervention literature in conditions that have overlapping symptoms with youth with SB and to develop a model of likely user needs for AYA-SB that promotes self-management. METHOD: The search strategy was conducted by a medical research librarian in the following databases: MEDLINE (Ovid), EMBASE (Elsevier), PsycINFO (EbscoHost), the Cochrane Library (Wiley), and Web of Science (Thomson Reuters) databases. The review was based on a systematic narrative synthesis framework and adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines (registration number CRD42018092342). RESULTS: In total, 18 articles were included in the current BIT review. The majority of included studies (1) targeted the management of chronic health conditions, (2) were informed by evidence-based approaches, (3) relied on content delivery, (4) were Web-based, (5) used linear or user-driven workflows, (6) included professional human support, and (7) included a control condition. CONCLUSIONS: Many of the evaluated BITs resulted in acceptable usage and maintained or improved targeted symptoms. A user needs model for AYA-SB is proposed with the intention that future research will promote further refinement and ultimate deployment of a BIT for AYA-SB to promote self-management.

Parental Distress and Stress in Association with Health-Related Quality of Life in Youth with Spina Bifida: A Longitudinal Study.

OBJECTIVE: This study examined associations between 3 distinct parent factors (parent personal distress, parenting stress, and spina bifida (SB)-specific parenting stress) and youth and parent proxy reports of youth health-related quality of life (HRQOL) over time. METHOD: Participants were recruited as part of a longitudinal study, and data were collected at 3 time points, spaced 2 years apart. Parents and youth completed questionnaires, and youth completed neuropsychological assessment tasks to determine youth intelligence quotient during home visits. RESULTS: Analyses revealed that higher levels of maternal SB-specific parenting stress were related to lower levels of youth-reported HRQOL at time 1. Other parent factors were not associated with youth report of HRQOL at the earlier time points, although higher levels of maternal SB-specific parenting stress and paternal parenting stress were associated with lower levels of youth HRQOL at time 3. For mothers and fathers, increased parent personal distress, parenting stress, and SB-specific parenting stress were associated with decreased proxy report of youth HRQOL. Of these three parent factors, SB-specific parenting stress was consistently the most strongly associated with parent proxy-report of youth HRQOL. CONCLUSION: Parenting stress and distress are important targets for interventions, and these interventions may improve youth outcomes, especially as youth age. Future research is needed to identify other factors influencing youth HRQOL over time.

A Longitudinal Study of Depressive Symptoms, Neuropsychological Functioning, and Medical Responsibility in Youth With Spina Bifida: Examining Direct and Mediating Pathways.

Objective: Given the increased risk for cognitive deficits and development of depressive symptoms in youth with spina bifida (SB), this study aimed to examine two pathways through which depressive symptoms and neuropsychological dysfunction may be associated with medical autonomy in this population: (1) depressive symptoms as predictors of medical autonomy as mediated by attention/executive functioning (the cognitive scarring model), and (2) attention/executive functioning as predictors of medical autonomy as mediated by depressive symptoms (the cognitive vulnerability model). Methods: Participants were recruited as part of a larger, longitudinal study, and included 114 youth with SB (M age = 10.96 at Time 1), their parents, and teachers. Neuropsychological constructs included attention, working memory, and planning/organizing abilities, which were measured with questionnaire and performance-based data. Depressive symptoms and medical responsibility were assessed via questionnaires from multiple respondents. Results: Bootstrapped mediation analyses revealed that teacher-reported depressive symptoms significantly mediated the relations between neuropsychological functioning (i.e., attention and working memory) and medical responsibility (all p's < .05); neuropsychological dysfunction did not mediate the relationship between depressive symptoms and medical responsibility. Conclusions: One way in which neurocognitive dysfunction may hinder the development of medical autonomy in youth with SB is through an increased risk for depressive symptoms.

Parental Perceptions of Child Vulnerability in Families of Youth With Spina Bifida: the Role of Parental Distress and Parenting Stress.

Objective: This longitudinal study aimed to investigate parental distress and parenting stress in relation to parental perception of child vulnerability (PPCV) in youth with spina bifida (SB). Methods: Parents of 140 youth with SB (ages 8-15 years at Time 1) were recruited as part of a longitudinal study; data were collected at two time points, spaced 2 years apart. Mothers and fathers completed questionnaires assessing levels of personal distress, parenting stress, and PPCV. Results: Mothers and fathers reported similar levels of personal distress, parenting stress, and PPCV, but reports of PPCV increased over time. For mothers, both personal distress and parenting stress were significantly associated with PPCV cross-sectionally, but not longitudinally. For fathers, there were significant cross-sectional and longitudinal associations between parenting stress and PPCV. The cross-sectional association between maternal parenting stress and PPCV was moderated by age, with a significant association only for older youth. Conclusions: For parents of youth with SB, personal distress, and parenting stress are related to parental perceptions of child vulnerability, and child age may moderate this relationship. Parental personal distress and parenting stress are important targets for future interventions.