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An Overview Of Risk Factors For Neural Tube Defects And An Investigation Within South Carolina, Lucy Pulliam

All Dissertations

Neural tube defects (NTDs) are congenital anomalies that affect both the morbidity and mortality of infants worldwide. Inadequate levels of the vitamin folate in women during early pregnancy have been shown to be a risk factor for NTDs. Recent efforts to ensure adequate folate intake in mothers have been helpful in reducing but not eliminating NTDs. This dissertation examines additional risk factors for NTDs as possible focus areas for decreasing NTD occurrence.

Chapter Two and Chapter Three are literature reviews conducted to explore select factors associated with an increased risk of NTDs and how these factors may affect folate availability …

Growth Of Condition-Related Knowledge Among Youth With Spina Bifida: Associations With Neurocognitive Functioning And Self-Management Skills, Olivia Emery Clark

Master's Theses

Spina bifida (SB) is a congenital birth defect that may involve physical, medical, and neuropsychological complications due to central nervous system malformation (Copp et al., 2015). Ambulation problems, bladder and bowel dysfunction, and hydrocephalus require daily medical management tasks, including catheterization, bowel program management, and skin checks to avoid secondary complications. While self-management skills are typically gained during adolescence, executive dysfunction in SB may complicate gains (Dennis et al., 2006; Greenley, 2010). Indeed, evidence in other chronic conditions suggests that adolescent executive dysfunction is linked to poorer medical self-management. Condition-related knowledge has been identified as an important basis of medical …

Health Concerns Of Adolescents And Adults With Spina Bifida, Jessica A. Starowicz

Electronic Thesis and Dissertation Repository

The Transitional and Lifelong Care (TLC) program is a multidisciplinary clinical service providing comprehensive, coordinated care to adolescents and adults with spina bifida (SB). This study sought to identify the most common health concerns among this population at initial consultation and identify patient factors related to these concerns to ultimately improve health care delivery. A retrospective chart review was performed. Descriptive analyses were completed and associations between concerns and patient factors were determined using Spearman’s rho correlation coefficients. A multiple linear regression was performed to estimate the relationship between patient factors and total number of concerns reported. Ninety-four patient charts …

Transition To Adulthood: Experience Of Youth With Spina Bifida In Japan, Shiho Murayama

Theses and Dissertations

Purpose: The purpose of this dissertation was to describe the experiences of transition to adulthood for emerging adults with spina bifida (SB) in Japan.Background: Spina bifida is one of the most common congenital conditions that affect functions of multiple body systems, including orthopedic, urologic, gastrointestinal, neurological, and cognitive. The prevalence of SB in Japan was 5.18 cases per 10,000 in 2012 and the long-term trends of the prevalence did not decline despite the recommendation of folic acid intake by the Japanese Government in 2000. Over 70% of individuals with this condition can survive into adulthood today because of the advancement …

Longitudinal Associations Among Individual Factors, Parenting Behaviors, And Medical Responsibility In Youth With Spina Bifida: Mediation, Moderation, And Growth Analyses, Alexa R. Stern

Dissertations

The objective of this research was to examine how youth individual factors (neuropsychological functioning and depressive symptoms) and maternal and paternal acceptance, behavioral control, and psychological control were associated with child medical responsibility among youth with spina bifida (SB). These longitudinal studies examined multimethod, multi-informant data from families of youth with SB, their parents, and teachers. The first study used bootstrapping methods to examine two competing, mediational pathways through which depressive symptoms, executive functioning, and attention were associated with medical responsibility over time. The second study used moderation analyses to examine how parenting behaviors moderated the relationship between these cognitive …

Self-Management In Youth With Spina Bifida: Associations With Parent Factors In The Context Of A Summer Camp Intervention, Colleen F. Bechtel Driscoll

Dissertations

Achieving condition-related independence is an important developmental milestone for youth with spina bifida (SB) that can be impacted by a variety of parent factors. This study aimed to investigate (1) the cross-sectional associations between parent factors (adjustment, perceptions, attitudes, behaviors) and youth self-management (e.g., youth's condition-related responsibility and mastery), (2) relations between these same parent factors and changes in youth self-management following participation in a summer camp intervention for one summer, and (3) associations between parent factors and growth in self-management variables over two summers. Participants were 89 camper-parent dyads recruited at a summer camp for youth with SB (Myouth …

Spina Bifida Mortality By Clinical And Demographic Characteristics Using The New York State Birth Defects Registry, 2008-2016, Anaclare Mackenzie Sullivan

Legacy Theses & Dissertations (2009 - 2024)

Background: Spina bifida is the most common neural tube defect. It has been associated with increased mortality, disability, and may require lifelong medical care. Few previous studies have assessed the impact that maternal race/ethnicity or variations in clinical features of the disease may have on mortality.

Condition Severity And Parent Psychosocial Functioning In Families Of Youth With Spina Bifida: The Role Of Parental Attitudes And Beliefs, Elicia Wartman

Master's Theses

Past research suggests that parents of youth with spina bifida (SB) have worse psychosocial outcomes than parents of typically developing youth. SB is a complex medical condition that is accompanied by varying degrees of physical disability and cognitive deficits. Research on stress and coping suggests that parents' attitudes and beliefs may contribute to their own psychosocial adjustment. This study unpacks condition severity and examines the role of severity of condition-related factors in predicting parental adjustment and parental attitudes and beliefs. Participants were recruited as part of a larger longitudinal study. Information on condition severity, including type of SB, lesion level, …

Trajectories Of Adaptive Functioning Among Youth With Spina Bifida: The Influence Of Neurocognitive Functioning And Parental Scaffolding, Adrien Winning

Master's Theses

Youth with spina bifida (SB), a congenital birth defect affecting the central nervous system, are at risk of experiencing an array of psychosocial and functional deficits (Copp et al., 2015; Holmbeck et al., 2003). Indeed, previous research has documented difficulties across the three adaptive functioning domains outlined by the American Association on Intellectual and Developmental Disabilities (AAIDD): conceptual (e.g., communication, self-direction, functional academics), social (e.g., interpersonal skills), and practical (e.g., self-care, navigating health-care; Copp et al., 2015). Despite this evidence, whether or not children with SB typically acquire skills across development is largely unknown. Additionally, little is known about risk …

The Impact Of Sociodemographic Factors On Health-Related, Neuropsychological, And Psychosocial Functioning In Youth With Spina Bifida, Jaclyn Lennon Papadakis

Dissertations

Objective: There is a lack of research on the impact of sociodemographic factors on youth with spina bifida (SB). This is concerning given the pervasive health disparities that exist in pediatric chronic illness groups. The aims of this study were to examine: (1) differences in health-related, neuropsychological, and psychosocial functioning among youth with SB based on sociodemographic risk; (2) cumulative risk as a predictor of youth outcomes, as moderated by age; (3) SB-related family stress as a mediator of the associations between sociodemographic/cumulative risk and youth outcomes, longitudinally. Methods: Participants (M age = 11.43, 53.6% female) were recruited as part …

Sleep-Wake Disturbances In Adolescents With Spina Bifida: Prevalence And Associations With Bio-Neuropsychosocial Functioning, Caitlin Beth Murray

Dissertations

Sleep is a critical component of healthy development during adolescence, and when disrupted, has been linked to difficulties with physical status, psychological health, family functioning, neuropsychological symptoms, and academic performance. The overarching goal of this project was to examine sleep-wake disturbances in association with bio-neuropsychosocial functioning in a vulnerable pediatric population of adolescents with spina bifida (SB). Specifically, this study aimed to 1) examine sleep-wake patterns in adolescents with SB using a multimodal sleep assessment, 2) identify daily temporal associations between sleep and pain as well as sleep and mood, and 3) identify the relationship between sleep-wake disturbances and bio-neuropsychosocial …

Depressive Symptoms, Neuropsychological Functioning, And Self-Management In Youth With Spina Bifida: Direct, Mediating, And Reciprocal Pathways, Alexa Stern

Master's Theses

Although successful self-management of health care responsibilities is critical to meeting the developmental demands associated with the transition to adulthood in youth with spina bifida (SB), research on individual factors impacting self-management in this population is sparse. Given the increased risk for cognitive deficits and development of depressive symptoms in this population, this study utilized a longitudinal, multi-method, multi-informant design to examine two pathways through which depressive symptoms and neuropsychological dysfunction may be associated with medical autonomy and adherence in youth with SB.

Bootstrapped mediation analyses revealed that teacher-reported depressive symptoms significantly mediated the respective relationships between attention and working …

A Concurrent And Longitudinal Examination Of A Bio-Neuropsychosocial Model For Predicting Medical Adherence And Responsibility In Youth With Spina Bifida, Alexandra Psihogios

Dissertations

Objective: The purpose of this multi-source, multi-method study was to examine biological, neuropsychological, and social (i.e., family dynamics and social adjustment) predictors of medical adherence and responsibility in a pediatric spina bifida (SB) sample.

Methods: One hundred forty youth with SB (53.6% female; M age = 11.40 at Time 1) and their caregivers participated in two study time points (Time 2 occurred two years after Time 1). Youth and their caregivers completed several questionnaires regarding medical self-management, family functioning, child social adjustment, and child executive functioning. Teachers completed a parallel measure of child executive functioning. Children completed a brief battery …

Parenting-Related Stress, Parental Distress, And Youth Health-Related Quality Of Life In Families Of Youth With Spina Bifida: Parenting Behaviors As Mediators, Colleen F. Bechtel

Master's Theses

Research has shown that youth with spina bifida (SB) have poorer psychosocial outcomes, including health-related quality of life (HRQOL), compared to typically developing youth. Demographic and illness-severity factors that may affect HRQOL have been identified, but modifiable factors affecting HRQOL have not yet been identified in this population. Potential modifiable factors include parent factors. In fact, in other pediatric populations, parent factors have been found to impact HRQOL above and beyond illness-severity. This impact may be especially salient for youth with SB, as these youth are more socially isolated and depend on parents for both medical and non-medical caregiving needs. …

Social Skills In Youth With Spina Bifida: A Longitudinal Multimethod Investigation Of Bio-Neuropsychosocial Predictors, Christina Ehrman Holbein

Dissertations

Objective: Despite research documenting social dysfunction in youth with spina bifida (SB), little is known about the etiology of these social difficulties; most investigations identifying predictors of social deficits have concentrated exclusively on one domain. This longitudinal study examines the relative predictive power of neurocognitive (attention and executive function), family (cohesion and conflict), and health-related (body mass index, condition severity) variables on later social skills in youth with SB.

Methods: 112 youth with SB (T1 mean age = 11.19 years) and their families participated in study visits two years apart. Study variables were assessed by multiple methods (questionnaire, medical chart …

Latino Youth With Spina Bifida: Psychosocial Functioning, Family Functioning, And Acculturation, Jaclyn M. Lennon

Master's Theses

Objective: Research on Latino youth with spina bifida (SB) is sparse. However, SB rates are highest in this ethnic group, and typically-developing (TD) Latino youth are at risk for poor psychosocial functioning. The aims of this study were to examine: (1) differences in psychosocial and family functioning between Latino and non-Latino Caucasian youth with SB; (2) family functioning as a predictor of youth psychosocial functioning as moderated by ethnicity; (3) the impact of acculturation on youth psychosocial and family functioning in Latino youth with SB. Methods: Participants were recruited as part of a larger, longitudinal study (Devine et al., 2012). …

Paternal Occupational Pesticide Exposure And Neural Tube Defects In The National Birth Defects Prevention Study, Stacy Marie Pettigrew

Legacy Theses & Dissertations (2009 - 2024)

ABSTRACT

Profiles Of Neuropsychological Functioning In Children And Adolescents With Spina Bifda, Rachel Wasserman

Dissertations

The current study examined neuropsychological performance among children with spina bifida (SB) to determine if there are distinct subgroups or "profiles" of cognitive functioning. 96 children with SB myelomeningocele (ages 8-15) completed a brief assessment battery. Hierarchical and non-hierarchical cluster analyses were used to identify and confirm a cluster solution. Hypothesized predictors of cluster membership included lesion level, number of shunt surgeries, history of seizures, age, ethnicity, socio-economic status, family stress, and family environment. Outcomes included independence, academic success, expectations for the future, and quality of life.

Ward's cluster method indicated a 3-cluster solution, and was replicated with 2 other …

Social-Environmental Predictors Of Health-Related Quality Of Life In Youth With Spina Bifida, Caitlin Beth Murray

Master's Theses

Health-related quality of life (HRQOL) is a multidimensional construct including an individual's physical and mental health and psychosocial well-being (De Civita et al., 2005), and the measurement of HRQOL has been recognized as a key marker of health outcomes in pediatric populations (Eiser & Jenney, 2007). Due to medical and technological advances, an increasing number of individuals with chronic illnesses are living longer. As such, research that investigates improvements in HRQOL in youth with chronic illnesses has become essential. Indeed, the number of studies examining HRQOL in pediatric populations has increased markedly; spina bifida (SB) is one among several chronic …

A Pilot Trial Comparing The Effects Of Onabotulinumtoxina And Standard Oxybutynin Therapy As First Line Treatment For The Poorly Compliant Pediatric Neurogenic Bladder, Sumit Dave

Electronic Thesis and Dissertation Repository

Research question

Is it feasible to conduct a phase III RCT to compare OnabotulinumtoxinA injections to oxybutynin as primary therapy in pediatric neurogenic bladder?

Methods

Patients on a stable oxybutynin regimen were recruited for a pilot RCT and underwent randomization to either OnabotulinumtoxinA or continuation of oxybutynin. Primary outcomes included an a priori defined feasibility and acceptability assessment. Secondary outcomes included continence, urodynamic parameters, side effects and QOL.

Results

The study enrolled 8 subjects in the OnabotulinumtoxinA group and 6 in the oxybutynin group. The recruitment rate was 75 % and the dropout rate was 6.6 %. There were 2 …

Social Cognitive Functioning And Social Competence In Children And Adolescents With Spina Bifida And Hydrocephalus: Social Cognitive Neuroscience As A Model, Caitlin Reid Roache

Dissertations

The purpose of the current study was to examine social cognition in children with spina bifida and congenital hydrocephalus (SBH) and to determine whether deficits in these domains are associated with poor social competence, utilizing concepts from social cognitive neuroscience. To build upon extant literature, multi-method assessments, multi-informant data, and a developmental, biopsychosocial perspective were utilized. Distinct aspects of social competence, as defined by social performance, social skills, and social adjustment, were considered.

The current study was designed to investigate: (1) differences in social cognition between children and adolescents with SBH and the general population, (2) potential neuroanatomical predictors of …

Agreement And Disagreement In Parent And Child Perceptions Of Spina Bifida Medical Responsibilities During The Transition To Adolescence, Alexandra Psihogios

Master's Theses

The purpose of this study was to examine the validity of informant discrepancies by evaluating levels of parent-child agreement and disagreement over who takes responsibility for SB medical tasks in relation to family conflict and medical adherence. Participants were 140 preadolescents with SB. Data used in this study are taken from the first wave of data collection (when adolescents were between the ages of 8-15) in a larger longitudinal study. Although disagreement levels predicting family conflict and medical adherence were non-significant (p > .05), a significant main effect of agreement and two significant Agreement x Conflict interactions predicting medical adherence were …

Towards Observational Measurement Of Social Competence In Youth With Chronic Health Conditions: Development Of Peer Interaction Scales For Youth With Spina Bifida, Christina E. Holbein

Master's Theses

This study aimed to create observational scales that were then validated with comparisons to relevant self-report measures in a sample of 106 children with spina bifida and their peers. Dyads completed questionnaires, interviews, and videotaped interaction tasks, the latter of which were coded on a variety of social functioning items. Five scales (i.e., Conflict, Prosocial Skills, Positive Affect, Conflict, and Dyadic Cohesion) were rationally derived. Internal consistency and inter-rater reliability at the scale level were good-to-excellent. Interscale correlations were in the low-to-moderate range for four scales, although Dyadic Cohesion was highly correlated with two other scales and was dropped. Convergent …

Neuropsychological Functioning, Parenting Behaviors, And Healthcare Behaviors Among Youth With Spina Bifida, Lauren Kelly O'Hara

Dissertations

Objective This study was designed to examine whether neurocognitive functioning (attention and executive functions) and parenting behaviors (acceptance, behavioral control and psychological control) are associated with medical adherence and autonomy among preadolescents and adolescents with spina bifida. Methods Questionnaire and observational data were collected from a sample of 8 to 15 year olds with spina bifida (n = 139) and their mothers, fathers, and teachers. Youth also completed neuropsychological testing. Results Youth with spina bifida demonstrated impairment on measures of attention and executive function, based on questionnaire and test data. Attention, executive function, and parenting behaviors were associated with medical …

The Direct And Indirect Impact Of Pain Intensity, Weight Status, And Activity Involvement On Social Competence Outcomes In Children And Adolescents With Spina Bifida, Bonnie S. Essner

Dissertations

The purpose of this study was to test a mediated effects model in which youth with spina bifida who have greater pain, are more overweight, or have worse motor control were expected to have fewer friends and to display worse social performance in part because their higher degree of condition severity interferes with their involvement in developmentally-appropriate activities.

Data for the current study were drawn from the first wave of a larger, longitudinal study of psychosocial adjustment of children and adolescents with spina bifida. The sample was comprised of 108 children and adolescents with spina bifida and shunted hydrocephalus, ages …

Myelomeningocele And The Neuropsychological Functioning Of Bilingual Children, Claudia Resendiz

Loma Linda University Electronic Theses, Dissertations & Projects

Myelomeningocele is the most common and most severe form of spina bifida, affecting the brain and spinal cord of millions of children. Children of Hispanic background have the highest prevalence rate of this condition. Despite this fact, research that examines the cognitive profiles of Hispanic children with myelomeningocele is limited. A review on bilingualism and neurocognitive performance suggests that a cognitive advantage is present among those who are able to learn and utilize two languages. Although some have investigated the neuropsychological performance of children with myelomeningocele, research has yet to examine whether a bilingual cognitive advantage is present among bilingual …

Do Family Dynamics Mediate The Relationshp Between Early Pubertal Development And Depression For Girls With And Without Spina Bifida?, Rachel Wasserman

Master's Theses

Girls who experience premature puberty have higher levels of depressive symptoms than their peers (Rierdan & Koff, 1991; Hayward et al., 1997). However, girls with spina bifida (SB) experience different psychosocial changes during puberty. This study proposed two longitudinal, mediated moderation models to investigate whether family variables (i.e., parent-child conflict and emotional distancing) contributed to differences in the connection between early pubertal timing and depressive symptoms for girls with and without SB. 62 families (31 SB, 31typically developing) were recruited for a larger longitudinal study. Constructs were assessed subjectively and objectively with the use of questionnaire and observational data. Findings …

Narrative Skills In Children With Spina Bifida And Hydrocephalus, Melissa Ann Halliday

Theses and Dissertations

This study examined how 22 children with spina bifida and hydrocephalus (SBH) and 22 matched control children with the same vocabulary age (VA) performed on story retelling and story generation tasks. The children were asked to retell two stories of different lengths (Stein and Glenn's Melvin, the Skinny Mouse and The Tiger's Whisker) and generate two stories from different stimuli (wordless picture book and verbal story starter). Analyses were conducted in terms of global narrative organization (story structure), local connection of ideas (cohesion), and productivity (number of words and utterances). Two-way ANOVAs were conducted to analyze how the stories and …

The Experience Of Decision Making In Adolescent Females And Young Women With Mobility Limiting Disorders, Bernice Balzer Allen

Theses and Dissertations

Young women with mobility limiting disorders face many challenges as they move through adolescence into young adulthood. In addition to the challenges of this developmental period, they must consider their disability as they manage their lives. Competent decision making is a foundational skill for self-management and for transition in adulthood. It is also a protective factor for resilience.There is little research on decision making in adolescents with disabilities. Therefore, the purpose of this qualitative study was to explore the decision making experiences of female adolescents and young women with mobility limiting disorders. Theoretical underpinnings for the study included Resilience Theory …