Transition to adulthood: Experience of Japanese youth with spina bifida.

Background: Emerging adults with spina bifida have complex developmental and health care needs. Improvement in healthcare means there is greater interest in understanding and supporting the transition needs of children with spina bifida to adulthood. However, the experiences during transition for emerging adults with spina bifida in Japan remain unknown.

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.

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.

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.

Causes of death among people with myelomeningocele: A multi-institutional 47-year retrospective study.

Purpose: This study aimed to analyze organ system-based causes and non-organ system-based mechanisms of death (COD, MOD) in people with myelomeningocele (MMC), comparing urological to other COD.

Methods: A retrospective review was performed of 16 institutions in Canada/United States of non-random convenience sample of people with MMC (born > = 1972) using non-parametric statistics.

Results: Of 293 deaths (89% shunted hydrocephalus), 12% occurred in infancy, 35% in childhood, and 53% in adulthood (documented COD: 74%).

An Integrative Review of the Use of the Individual and Family Self-Management Theory in Research.

The extent of the application of the Individual and Family Self-Management Theory (IFSMT) in research has yet to be determined. The purpose of this analysis was to review the use of the IFSMT in published research and evaluate posited constructs and relationships. Dimensions and categories of the IFSMT and the interrelationships were generally supported in the 77 articles reviewed.

Family engagement in paediatric acute care settings: A realist review.

Aim: To create a programme theory of family engagement in paediatric acute care to explicate the relationships between contexts and mechanisms of family engagement that align with family, direct care providers and healthcare organization outcomes.

Design: Realist review and synthesis.

Data Sources: PubMed, CINAHL, PsycINFO and Web of Science searches for the 2.

Energy expenditure and weight-related behaviors in youth with Down syndrome: a protocol.

Background: The consequences of obesity are ominous, yet healthcare professionals are not adequately preventing or treating obesity in youth with Down syndrome (DS). Total daily energy expenditure (TDEE) is the energy expended in 24 h through physical activity and life-sustaining physiologic processes. An individual's TDEE is essential for determining the daily caloric intake needed to maintain or change body weight.

Weight Status of Children Participating in the National Spina Bifida Patient Registry.

Objectives: Describe the distribution of weight status categories and determine factors associated with overweight and obesity (OW/OB) in children and adolescents with spina bifida (SB) using the National Spina Bifida Patient Registry.

Methods: Demographic, anthropometric, and clinical data collected from 2009 through 2018 was used to describe the prevalence of OW/OB. The generalized estimating equation model (GEE) identified factors associated with OW/OB among individuals with SB.

Trends in the early care of infants with myelomeningocele in the United States 2012-2018.

Purpose: The early care of children with spina bifida has changed with the increasing availability of fetal surgery and evidence that fetal repair improves the long-term outcomes of children with myelomeningocele. We sought to determine current trends in the prevalence and early care of children with myelomeningocele using a national administrative database.

Methods: This is a retrospective, cross-sectional cohort study of infants with spina bifida admitted within the first 28 days of life using the 2012-2018 Healthcare Cost and Utilization Project National Inpatient Database.

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.

Sociodemographic disparities in fetal surgery for myelomeningocele: a single-center retrospective review.

Objective: Fetal surgery for myelomeningocele has become an established treatment that offers less risk of requiring a ventricular shunt and improved functional outcomes for patients. An increasing body of literature has suggested that social determinants of health have a profound influence on health outcomes. The authors sought to determine the socioeconomic and racial and ethnic backgrounds of patients who were treated with fetal surgery versus those who underwent postnatal repair.

Engagement of Families in the Care of Hospitalized Pediatric Patients: A Scoping Review.

This scoping review was conducted to examine the range, nature, and extent of the published family engagement literature specific to the pediatric acute care setting to highlight future research and practice development opportunities. Included studies ( = 247) revealed global relevance. Engagement strategies ranged from more passive such as allowing/encouraging families to be present at the bedside to more active strategies aimed at promoting mutual and reciprocal nurse-patient interactions.

Accuracy of body mass index in categorizing weight status in children with intellectual and developmental disabilities.

Purpose: To identify the accuracy of Body Mass Index (BMI) to categorize body weight in a sample of children with spina bifida and Down syndrome as compared to typically developing peers.

Methods: A secondary analysis of 32 children with spina bifida, Down syndrome or no chronic illness. A calculated BMI was plotted on the Centers for Disease Control and Prevention age- and sex-specific BMI growth charts to determine each child's weight status.

One Size Does Not Fit All: Discharge Teaching and Child Challenging Behaviors.

This study compares quality of discharge teaching and care coordination for parents of children with challenging behaviors participating in a nursing implementation project, which used an interactive iPad application, to usual discharge care. Unlike parents in the larger quasi-experimental longitudinal project, parents of children with challenging behaviors receiving the discharge teaching application (n = 14) reported lower mean scores on the quality of discharge teaching scale-delivery subscale ( = 8.2,  = 3.

The Adolescent/Young Adult Self-Management and Independence Scale (AMIS-II): Expanding evidence for validity and reliability.

Purpose: The purpose of this longitudinal study was to evaluate the internal consistency reliability and construct validity of the Adolescent/Young Adult Self-Management and Independence Scale-II (AMIS-II), an interview-based measure of self-management for youth with chronic health conditions.

Methods: A diverse sample of adolescents and young adults (AYA) with spina bifida (SB) (n = 64 AYA; mean 20.88; age range 18-25 years) completed an AMIS-II interview.

Integrative review and evaluation of quality of life related instruments in pediatric urology.

Introduction: While most paediatric urologists consider patients' quality of life (QOL) important, few actually measure this outcome. Our goal was to assess instruments used in the pediatric urology QOL literature, specifically looking at whether they captured QOL.

Methods: We searched MEDLINE and EMBASE for articles with a self-described primary outcome of measuring QOL.

Quality of life: Guidelines for the care of people with spina bifida.

Quality of Life (QOL) and Health-Related Quality of Life (HRQOL) are important concepts across the life span for those with spina bifida (SB). This article discusses the SB Quality of Life Healthcare Guidelines from the 2018 Spina Bifida Association's Fourth Edition of the Guidelines for the Care of People with Spina Bifida. The focus of these QOL Guidelines was to summarize the evidence and expert opinions on how to mitigate factors that negatively impact QOL/HRQOL or enhance the factors positively related to QOL/HRQOL, the measurement of QOL/HRQOL and the gaps that need to be addressed in future research.

Self-management and independence guidelines for the care of people with spina bifida.

Self-management and independence behaviors are associated with improved health conditions common to spina bifida such as skin integrity and bowel and bladder management. While most children with spina bifida ultimately achieve basic self-care behaviors, (e.g.

Self-management and spina bifida: A systematic review of the literature.

Background: Self-management is critical to optimizing the health of individuals with a chronic condition or disability and is, therefore, a central concept in individual and family-centered healthcare delivery. The purpose of this review is to report the state of the science of self-management for individuals with spina bifida (SB) from a lifespan perspective.

Objective: This review will summarize the (a) development and use of self-management skills and behaviors across the life span, (b) factors related to self-management behaviors, (c) development of generic or condition-specific measures of self-management used with a spina bifida population, and (d) development and/or outcomes of interventions to improve self-management in SB.

Parent Readiness for Hospital Discharge Scale: Psychometrics and Association With Postdischarge Outcomes.

Introduction: The purpose of this study is to validate the Readiness for Hospital Discharge Scale (RHDS) for use with parents of hospitalized children. PedRHDS is a structured tool for a discharge readiness assessment before pediatric discharge.

Methods: Using combined data from four studies with 417 parents, psychometric testing and item reduction proceeded with principal component analysis for factor structure delineation, Cronbach's alpha for reliability estimation, and regression analysis for predictive validity.

Quality of Life in Adolescents and Young Adults with and Without Spina Bifida: An Exploratory Analysis.

Purpose: The measurement of Quality of life (QOL) in adolescents and especially in adolescents with disabilities is limited, often by an assessment of function rather than perception. This analysis explores QOL in adolescents and young adults (AYA) with and without Spina Bifida (SB) from the perspective of AYA and their parents.

Design And Methods: A descriptive study using content analysis was conducted as a component of a larger multi-site mixed-method study of secondary conditions and adaptation.