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.

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.

Guidelines and scientifically-based spina bifida care: Guidance across the lifespan in a global health context.

The COVID-19 pandemic has reminded us that, if of nothing else, we live in a globalized community. Enthusiasm for evidenced-based medical knowledge is also contagious. Just as the incidence of SARS-CoV-2, the associated coronavirus, has had a borderless impact on global public health, so too neural tube defects have widespread significance.

Prenatal counseling: Guidelines for the care of people with spina bifida.

As the diagnosis of Spina Bifida (SB) is often made prenatally, SB-specific prenatal counseling is needed. It is essential to provide information about medical care and lifelong impact of this diagnosis, treatment options available to women carrying fetuses affected, and resources that will assist in the care of individuals with SB. This article outlines the SB Prenatal Counseling Guidelines from the 2018 Spina Bifida Association's Fourth Edition of the Guidelines for the Care of People with Spina Bifida and acknowledges that further research in SB prenatal counseling is warranted.

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.

Immigration and transition: Changing demographics forecast the emerging trends in spina bifida care.

Globally, the number of immigrants, refugees, and internally displaced persons is escalating. While immigration is often a result of social determinants, including political discrimination, poverty, education, and work-related prospects, immigration itself can also be conceptualized as a social determinant of health. Through the National Spina Bifida Patient Registry (NSBPR), investigators have begun to recognize existing disparities within growing minority populations affected by spina bifida.

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.

Scientific methodology of the development of the Guidelines for the Care of People with Spina Bifida: An initiative of the Spina Bifida Association.

Background: We combined literature review and consensus-building methodologies to develop health care guidelines for people with Spina Bifida across the life span.

Objective: The present paper describes the methodology used to update and expand this fourth edition of the Guidelines for the Care of People with Spina Bifida ("Guidelines"). This process was a fundamental initiative within the Spina Bifida Collaborative Care Network.

The development of the Adolescent/Young Adult Self-Management and Independence Scale II: Psychometric data.

Purpose: Measuring self-management behaviors in adolescents and young adults with chronic health conditions has become a priority in health care, yet there is a paucity of instruments that capture these behaviors. The purpose of this psychometric study was to evaluate the reliability and validity of the 17-item generic Adolescent/Young Adult Self-Management and Independence Scale II (AMIS II).

Method: Data were collected from 201 adolescents/young adults (AYA) with spina bifida and 129 of their parents.

A Global Family Quality of Life Scale: Preliminary psychometric evidence.

Purpose: Psychometric data are reported for a new Global Family Quality of Life Scale (G-FQOLS) (3-items) evaluating family members, parents and adolescent/young adults (AYA).

Methods: Families (N= 209) were interviewed in a study addressing secondary conditions and adaptation in families of AYA with and without spina bifida (SB). Principal component factor analysis with Varimax rotation, Cronbach alpha, and Intraclass correlation (ICC) for parent-AYA agreement of FQOL assessment were conducted.

Variation in bowel and bladder continence across US spina bifida programs: A descriptive study.

Purpose: Continence is low in individuals with spina bifida, but published prevalence varies markedly across studies. The objective of this study was to examine bladder and bowel continence among patients served by multidisciplinary clinics participating in the National Spina Bifida Patient Registry and to examine whether variation in prevalence exists across clinics.

Methods: Data were obtained from patients 5 years and older from March 2009 to December 2012.

Depressive symptoms in parents of adolescents with myelomeningocele: the association of clinical, adolescent neuropsychological functioning, and family protective factors.

Purpose: The purpose of this study is to determine if neuropsychological functioning and family protective factors are related to depressive symptoms in parents of adolescents with myelomeningocele (MMC).

Methods: Fifty adolescents (28 females, 22 males; predominately Caucasian; ages 12-21 years, M=15.7, SD=2.

The experience of self-management in adolescent women with spina bifida.

It is essential for youth with chronic health conditions like spina bifida (SB) to develop self-management skills to combat vulnerability, achieve self-sufficiency, and transition to adulthood. The purpose of this qualitative study was to describe the experience of self-management in 31 adolescent women with SB. Three themes emerged from this study: (1) opportunities to engage in self-management activities--knowledge, skills, and aspirations; (2) dance of individuation--parental impact on self-management; and (3) advocacy within self-management--confronting discrimination and stigma.

The relationship of neuropsychological functioning to adaptation outcome in adolescents with spina bifida.

Adolescents with spina bifida (SB) vary in their ability to adapt to the disease, and it is likely that numerous risk and protective factors affect adaptation outcomes. The primary aim was to test neuropsychological impairment, exemplified herein by executive dysfunction, as a risk factor in the Ecological Model of Adaptation for Adolescents with SB. Specific hypotheses were that: (1) executive functioning predicts the adaptation outcome of functional independence in adolescents with SB; (2) executive functioning mediates the impact of neurological severity on functional independence; and (3) family and adolescent protective factors are related to functional independence and moderate the relationship between executive functioning and functional independence.

The future of the multidisciplinary clinic.

The multidisciplinary clinic is the accepted model for health care delivery related to spina bifida. This article focuses on the factors affecting multidisciplinary care delivery and future challenges for multidisciplinary programs.

The experience of adolescent women living with spina bifida. Part II: Peer relationships.

Relationships are much more complex for those with disabilities than for those without disabilities. This study was part of a larger mixed-method investigation that explored comprehensive aspects of adaptation in adolescents with spina bifida (SB). The purpose of this qualitative component of the study was to explore the experiences of peer relationships in 31 adolescent women with SB.

The experience of adolescent women living with spina bifida part I: self-concept and family relationships.

Adolescent women with spina bifida (SB) face unique and diverse challenges. The purpose of this qualitative component of a larger mixed-method study on adaptation was to heighten rehabilitation nurses' understanding of self-concept and family relationships during adolescence. Interviews were conducted with 31 adolescent women and analyzed for themes.

Sexuality issues in adolescents with a chronic neurological condition.

Substantial progress in the medical treatment of individuals with spina bifida (SB) has increased the numbers who survive into adolescence and adulthood. However, sexual health in this population has not received much attention. This study explored the knowledge (SB Sexuality Knowledge Scale), worries (SB Worries Scale), romantic appeal (from Harter's Self-Perception Scale), and access to sexuality information of a sample of 60 adolescents from a midwestern state.