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. Qualitative analysis was conducted using grounded theory, and themes were coded based upon the social-ecological model (SEM). We generated themes into multiple levels: the individual level, the family level, the provider level, the systems of care level, and the societal level. Stakeholders expressed a critical need to improve coordination between systems, and to increase provider availability to care for YYA with IDD and co-occurring MH conditions.

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. In contrast, no comparable federal and state mandates exist in the system of health care. The legislative mandates in education, rehabilitation, and employment are presented and discussed as well as the federal legislation on rights and protections for individuals with intellectual disabilities and developmental disabilities. Consequently, health care transition (HCT) planning involves application of a framework of care that is characteristically different than the planning efforts undertaken for adolescents and emerging adults (AEA) with special health care needs (SHCN)/disabilities and for typically developing AEA. The best practice HCT recommendations are discussed in the context of this intellectual disabilities and developmental disabilities framework of care. CONCLUSIONS: Health care transition planning for adolescents and emerging adults with intellectual disabilities and developmental disabilities involves additional and distinctly clinical and programmatic models of care. PRACTICE IMPLICATIONS: Health care transition planning guidance for adolescents and emerging adults with intellectual disabilities and developmental disabilities are provided based upon best practice recommendations.

Stakeholders' perspectives on caregiver outcomes for health care transition for adolescents and young adults with special health care needs: A qualitative study.

BACKGROUND: Previous literature has explored parent/caregiver perspectives and satisfaction with the health care transition (HCT) process for their adolescents and young adults with special health care needs (AYASHCN). Limited research has explored the opinion of health care providers and researchers on parent/caregiver outcomes associated with a successful HCT for AYASHCN. METHODS: A web-based survey was distributed through the international and interdisciplinary Health Care Transition Research Consortium listserv, which at the time of the survey was composed of 148 providers dedicated to optimizing the HCT of AYAHSCN. Participants responded to the open-ended question, 'What parent/caregiver-related outcome(s) would represent a successful healthcare transition?' Respondents included 109 providers (52 health care professionals, 38 social service professionals and 19 other). Responses were coded for emergent themes, and research suggestions were identified. RESULTS: Qualitative analyses identified two major themes: emotion- and behaviour-based outcomes. Emotion-based subthemes included relinquishing control of child's health management (n = 50, 45.9%) as well as parental satisfaction and confidence in their child's care and HCT (n = 42, 38.5%). Respondents also noted that parents/caregivers should experience an improved sense of well-being and decreased stress (n = 9, 8.2%) due to a successful HCT. Behaviour-based outcomes included early preparation and planning for HCT (n = 12, 11.0%) and parental instruction on the knowledge and skills necessary for their adolescent to independently manage their health (n = 10, 9.1%). CONCLUSIONS: Health care providers can assist parents/caregivers in learning strategies for instructing their AYASHCN about condition-related knowledge and skills as well as provide support for 'letting go' of the caregiver role during the HCT to adult-focused health services and adulthood. Communication between the AYASCH, their parents/caregivers and paediatric- and adult-focused providers needs to be consistent and comprehensive to ensure continuity of care and a successful HCT. We also offered strategies to address the outcomes suggested by the participants of this study.

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. The prominent issues addressed in this article include the following. Defining clearly what constitutes models of health care transition practice as ambiguity exists with terminology used with concepts integral to health care transition. The indistinct meanings of health care transition terminology commonly used, such as transition, transfer, readiness, and preparation, need to be operationalized for widespread application. Furthermore, questions remain as to what goal-directed outcomes are expected within this field of practice and science.

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. METHODS: Chart reviews and data extraction were conducted on 108 children and youth, ages 1 month to 21 years, admitted for PPH in a regional children's academic medical center between May 2017 and July 2019. Sociodemographic variables included sex, age, type of insurance and ethnicity. Clinical variables included level of lesion, ambulation status, shunt dependency and selected diagnostic categories. Univariate, bivariate, and multivariate analyses were conducted to identify factors associated with PPH. RESULTS: Factors associated with PPH included being male, ages 5-18 years, low lumbar level lesions, non-ambulatory, with public insurance, Hispanic and shunt dependent. Most hospitalizations (73%) were for neurologic or urologic conditions. Factors independently associated with PPH were ethnicity for urologic conditions, being ambulatory for metabolic conditions, and age for gastroenterology conditions. CONCLUSION: Selected demographic and clinical variables were found to be associated with PPH of children and youth with myelomeningocele-type SB. The most common reasons for PPH were shunt malfunctions and urinary tract infections, consistent with other studies.

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. RESULTS: The most frequently identified accommodation was enrollment in special education classes in 47.7% of the charts. Other academic accommodations that were most often reported were adaptive physical education (n = 71, 39.9%), tutoring (n = 28; 15.7%), and home schooling (n = 21; 11.8%). Clean intermittent catheterization was the most frequently identified health-related accommodation provided by the school nurse/aide (n = 57; 32%).The largest percentage of requests for additional accommodations were made during the middle school grades (15; 54.8%) followed by high school (10; 32.2%). CONCLUSION: Findings demonstrated that persistent issues were identified by parents/adolescents regarding the provision of school-related accommodations. This is a relevant area for clinical practice to ensure students with special health care needs and those with spina bifida receive the academic and health-related accommodations in their Individualized Education Program/504 plans.

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. Twenty percent reported having specialized HCTP education. Of which more than half received it outside of the workplace. Factor analysis revealed two constructs explaining 73.4% of the variance in nurses' reported level of knowledge. DISCUSSION: HCTP education and the development of nurse-led services to facilitate optimal health care transitions outcomes are necessitated. Academia and service have a shared responsibility in educating nurses.

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. DESIGN AND METHODS: This was a qualitative analysis of a national survey of pediatric nurses. A thematic iterative process was used to code data. Three coders separately analyzed responses and then met to compare and discuss until a final list of codes was achieved. The codes were further analyzed until themes and subthemes emerged. Throughout the process, disagreements were discussed and resolved until consensus was achieved. RESULTS: A sample of 1814 pediatric nurses and nurse practitioners from two US professional organizations participated in this national survey to gather data on their involvement in HCT planning. This survey contained 17 items, one of which was an open-ended question stating: Is there anything else you would like to share about your role with the population of transitioning youth and young adults with chronic illness and/or disability? The analysis of responses provided by 154 nurses is presented. Initial coding resulted in 11 categories of data. Four major themes, including four subthemes, emerged from the analysis of responses: Support for the need for transition (subtheme: Nursing involvement); Guidance needed for professional practice (subtheme: Types of guidelines and training); Lack of service linkages to adult providers; and Difficulty letting go (two subthemes: Pediatric providers; Parents). PRACTICE IMPLICATIONS: These findings indicated strong support for the need of HCT services and the importance of nursing involvement. However, challenges to HCT implementation were identified that include systemic, psychosocial, and educational barriers. As this field of practice and research continues to grow, it is important that pediatric nurses recognize the opportunities to have a clinical voice to develop nurse-led HCT services and programs.

Measuring health care transition: Across time and into the future.

PROBLEM: Youth with special health care needs often experience significant difficulty transitioning into adult health care services and adult life. Services supporting youths' transition from pediatric to adult health care (Health Care Transition (HCT)) have been a priority for nearly 30 years to improve this transition process. The Health Resources and Service Administration, Maternal and Child Health Bureau have measured HCT service provision since 2001 but the longitudinal use of this measure has never been examined (Blumberg, 2003; Maternal and Child Health Bureau, n.d.). ELIGIBILITY CRITERIA: This manuscript highlights the consistent and inconsistent uses of HCT constructs in two prominent national surveys (the National Survey of Children with Special Health Care Needs (NS-CSHCN) and the National Survey of Children's Health (NSCH)) between 2001 and 2019. All studies utilizing an HCT measure within a national survey between the 18 years were included in this examination. RESULTS: Significant changes have been made to the measurement of HCT service provision resulting in inconsistencies over the last 18 years. Measurement criteria and survey questions have changed substantially from the NS-CSHCN and NSCH limiting one's ability to examine trends in HCT since 2001. Since 2016, few changes have been made, allowing for analysis of trends over time. Importantly, the NSCH includes added questions pertaining to HCT that are not included in the composite HCT outcome measure. CONCLUSION: Future work should include a validation study of the HCT outcome in the National Survey of Children's Health and inclusion of additional HCT questions to promote continued and extensive use of a measure that more fully represents the needs of youth and their families.

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. Dimensions of prominent nursing contributions in collaboration with interdisciplinary partners as it pertains to scholarship, research, practice, and policymaking will be presented. The implications for future nursing involvement in this emerging field will be discussed.

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. Direct care nurses (N = 132) responded to demographic questions including their education level and organization size, and 26 items rating the importance of elements of FCC in their care (as it applies to themselves) and in their organizations (as it applies to their hospital or organization) using a 5-point Likert scale. Open ended questions supplemented the survey to yield narrative comments to triangulate the findings. RESULTS: The nurses' personal responses and their rating of their organizations were analyzed separately. The Cronbach alphas were 0.867 and 0.938, respectively. Factor analyses revealed the same three factors in the two foci of questions for (a) the nurse's own practice and (b) the organization's support of FCC: Philosophy of FCC, Implementation of FCC and Environment Variations of FCC. A qualitative process of narrative analysis added support to the factors with clarity in thematic triangulation. Additionally, there was a significant difference in the mean scores between nurses' personal responses and the mean scores for their organizations for all three factors (p = .000) and for self-reported FCC by nursing education to validate the utility of the tool. CONCLUSIONS: This instrument quantified the importance of FCC to pediatric nurses and their workplace support of FCC and can be used in future studies to evaluate FCC.

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.Also, research efforts are not limited to the pediatric populations; research is needed for the provision of evidence-based careand monitoring of health and psychosocial outcomes of adults with childhood acquired chronic conditions.

Self-management for youth and young adults with special health needs: protocol for a scoping review of health care transition planning literature.

OBJECTIVE: The purpose of this scoping review is to explore the extent to which self-management of youth and young adults with special health care needs is reported in the health care transition literature. INTRODUCTION: It is essential for youth and young adults with special health care needs to learn the self-management skills, to the extent possible, that are essential in maintaining the stability of their chronic condition to seamlessly transfer to adult care and live independently. Acquisition of self-management competencies for chronic care management is an essential component of health care transition preparation. INCLUSION CRITERIA: The inclusion criteria will be based upon age and condition designation. The age range of participants will include youth and young adults, aged nine to 35 years, who have special health care needs. Inclusion criteria consists of both non-categorical and diagnostic specific terminology for youth and young adults with a childhood acquired chronic condition. Non-categorical terms used include "long-term chronic condition," "special health care needs," "medical complex condition," "complex care needs," "developmental disability," "intellectual disability," "mental health condition," "emotional disabilities," "physical disabilities," "chronic illness," and "chronic condition." METHODS: The following databases will be accessed for this health care transition scoping review: CINAHL, Cochrane CENTRAL, Embase, Ovid MEDLINE, PsycINFO, and Web of Science. Relevant gray literature will be accessed as well. The Covidence software platform will be used to review citations and full-text articles. Two reviewers will independently review abstracts and full texts of studies, and extract data using the data extraction tool. Any conflicts will be resolved with a third reviewer. Review findings will be presented in tabular format and narrative synthesis based upon the scoping review objective.

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. The theoretical basis for transitions of care at the macro level, examples of nurse-led models for transitions of care, and key activities and implications for nursing education and practice are described. A holistic framework for effective transitions of care across healthcare settings can guide nursing educators in the development of specific nursing competencies for transitions of care.