Psychosocial needs and outcomes of adults with spina bifida: A scoping review, 1974-2023.

Limited evidence exists that serves to guide the field of practice and research pertaining to the long-term issues and needs of adults with spina bifida. Understanding the lived experience of adults with spina bifida has lagged behind considerably resulting in limited evidence-based guidance for individuals with spina bifida and their families and the health care professionals who provide services to this population. Given the paucity of knowledge of the lived experience as it pertains to adulthood, this scoping review was undertaken.

Health care transition recommendations for young people with intellectual and developmental disabilities and co-occurring mental health conditions: Stakeholder survey findings.

Background: Limited knowledge exists as to the supports and services young people with IDD and co-occurring mental health conditions need to transition to adult-focused health care and adulthood.

Methods: The survey findings presented were part of a larger investigation that explored these service and supports needs obtained from 144 respondents. Data reported for this investigation were obtained from 144 respondents who answered the question, "What do you think would be most helpful to assist young people with IDD and mental health conditions with the transition from child to adult health care (not including mental health care)?"Qualitative analysis based upon the social-ecological model was undertaken.

Barriers to Mental Health Care Transition for Youth and Young Adults with Intellectual and Developmental Disabilities and Co-occurring Mental Health Conditions: Stakeholders' Perspectives.

Youth and young adults (YYA) with intellectual and developmental disabilities (IDD) have high rates of co-occurring mental health (MH) conditions. The time during transition from pediatric to adult health and mental health care can be a very challenging, with risk of loss of services leading to poor outcomes. This study aimed to explore barriers to transition from pediatric to adult health and mental health care and services for individuals with IDD and co-occurring MH conditions, by eliciting the view of stakeholders, including disability advocates.

Health care transition planning for adolescents and emerging adults with intellectual disabilities and developmental disabilities: Distinctions and challenges.

Purpose: The purpose of this article is to provide the reader with insight and enhanced understanding of the health care transition planning process for adolescents and emerging adults with intellectual disabilities and developmental disabilities. There are distinctly different programmatic considerations that need to be addressed in advancing their transfer of care to adult providers and promoting their transition to adulthood. These differences are due in part to the federal and state legislative initiatives that were established in the education, rehabilitation, employment, and developmental disabilities service systems.

Exploratory study of the provision of academic and health-related accommodations to transition-age adolescents and emerging adults with spina bifida.

Purpose: The purpose of this exploratory study was to investigate the types of academic and health-related accommodations provided to adolescents and emerging adults with spina bifida aged 9-20 years.

Methods: Data were extracted from the paper and electronic records of transition-age youth enrolled in the study. Four open ended items involved content analysis.

Risk factors for unanticipated hospitalizations in children and youth with spina bifida at an urban children's hospital: A cross-sectional study.

Background: Spina bifida (SB) is a condition resulting from the improper closure of the neural tube and vertebral column during fetal development. While patients' life expectancy and quality of life have improved dramatically due to medical advances, children continue to experience health-related issues that often require hospitalizations.

Objective: The association among sociodemographic and clinical characteristics with potentially preventable hospitalizations (PPH) in children and youth with myelomeningocele type SB was investigated in this cross-sectional study.

Health Care Transition Planning: Educational Needs of Pediatric Nurses and Pediatric Nurse Practitioners.

Introduction: The purpose was to identify the educational needs of pediatric nurses and pediatric nurse practitioners providing direct care to transition-aged youth with chronic illness and disability and to identify strategies to develop health care transition planning (HCTP) expertise.

Method: Mixed-methods descriptive analyses were performed on survey data extracted from a larger national study exploring the provision of HCTP activities performed by nurses of two pediatric nursing professional organizations.

Results: Items querying educational needs were completed by 1,162 pediatric nurses serving in advanced practice and staff roles.

Health care transition planning: A potpourri of perspectives from nurses.

Purpose: Nurses have important roles as members of the healthcare transition (HCT) planning interdisciplinary team. Nursing's scope of practice and framework of care brings a distinctive and complementary approach to this expanding field in pediatric care. It is therefore relevant to better understand the extent to which pediatric nurses are involved with the provision of HCT services and model development.

Health Care Transition: The Struggle to Define Itself.

Health care transition is an expanding field of health care practice and research focused on facilitating adolescents and emerging adults with long-term conditions to transfer uninterruptedly from pediatric to adult health care services and to transition successfully into adulthood and beyond. There is a widespread need to develop and implement service models as approximately one million adolescents and emerging adults with long-term conditions transfer their care into the adult system and enter adulthood. The purpose of this article is to explore major issues associated with the current state of health care transition practice, research and ultimately policymaking and systems change.

Nursing's Influence on the Evolution of the Field of Health Care Transition and Future Implications.

Health care transition (HCT) is an emerging field of practice and research with unlimited opportunities for nursing involvement. This article will highlight the unique contributions of nurse clinicians and researchers worldwide that have influenced HCT practice and research. The historical underpinnings of nursing practice will be discussed and feature the distinctive models and concepts of care that have and will continue to be contributed to HCT practice and research.

Psychometric Testing of Family Centered Care (FCC) Instrument: A Mixed Methods Analysis of Pediatric Nurses and Their Workplace Perceptions of FCC.

Background/purpose: Family-Centered care (FCC) is a model used in pediatric healthcare delivery wherein planning care for children incorporates the family, but questions remain whether there has been effective FCC implementation in practice. The purpose of this study was to examine the importance of FCC to pediatric nurses and their view of their organizations' support of FCC implementation.

Method: A survey with FCC descriptor statements was distributed electronically to the Society of Pediatric Nurses.

Understanding the Phenomenon of Health Care Transition: Theoretical Underpinnings, Exemplars of Nursing Contributions, and Research Implications.

This manuscript features exemplars of nursing science that contribute to the development of health care transition practice models and evidence-based care. These research exemplars demonstrate the need for diverse investigative approaches coupled with clinical acumen and expertise in health care transition. The focus of describing nurse-led and nurse-contributory research and quality improvement efforts in this emerging field is offered to foster nursing involvement.

Nurse competencies for transitions of care: Implications for education and practice.

Although there are a number of transitions of care initiatives that address specific needs as patients move across healthcare settings, adverse events still occur during handoffs. Transitions of care create periods of vulnerability for populations with complex needs that include communication gaps, medication changes, and poorly coordinated treatment plans, often without involving patients and their families. This paper outlines what nurses need to know to provide for safe transitions of care across the healthcare continuum.

Reconsidering reviews: the role of scoping reviews in digital medicine and pediatrics.

Digital health is a rapidly developing field which is positioned to transform the manner in which healthcare is delivered, especially amongst adolescents and young adults. In order to assess the efficacy of novel medical devices, clinicians and researchers often turn to the literature for guidance. Randomized control trials and the systematic reviews and meta-analyses that they inform are considered to be at the top of the evidence hierarchy.