Cecily L. Betz

TRANSITION OF ADOLESCENTS WITH SPECIAL HEALTH CARE NEEDS: REVIEW AND ANALYSIS OF THE LITERATURE

A review and analysis of 43 transition studies published from 1982 through 2003 was conducted. The studies reviewed represent the diverse purposes of international researchers for examining transition issues and questions. Findings of this literature review indicate that transition research is in early stages of development. A number of limitations were associated with these studies, including the lack of theoretical frameworks, the use of valid and reliable instruments, and research designs lacking adequate controls. Future research studies are needed that overcome the design limitations of past investigations.

Voices not heard: A systematic review of adolescents' and emerging adults' perspectives of health care transition

BACKGROUND A better understanding of the needs of adolescents and emerging adults with special health care needs (AEA-SHCNs) is essential to provide health care transition services that represent best practices. The purpose of this systematic review was to evaluate the research on health care transition for AEA-SHCNs from their perspectives. METHODS A comprehensive literature review of research publications since 2005 was performed using the PubMed, Cumulative Index to Nursing and Allied Health Literature, and EBSCO databases. Thirty-five studies met the final review criteria. RESULTS The process of transition from child to adult for AEA-SHCNs is complex. Individuals experiencing the transition desire to be a part of the process and want providers who will listen and be sensitive to their needs, which are often different from others receiving health care at the same facility. CONCLUSIONS More research that considers the voice of the AEA-SHCNs related to transition from pediatric to adult care is needed.

FACILITATING THE TRANSITION OF ADOLESCENTS WITH CHRONIC CONDITIONS FROM PEDIATRIC TO ADULT HEALTH CARE AND COMMUNITY SETTINGS

This article provides an overview of the health care issues and concerns of adolescents with special health care needs and disabilities who are in transition from pediatric to adult health care settings. Adolescents and their families face numerous challenges in accessing adult health care providers who can give adequate primary and specialized health care services to this growing population of youth. Navigating the myriad new and unfamiliar adult services available can be overwhelming for adolescents, their families, and pediatric providers. Assessment and intervention strategies are described that can be used by the pediatric nurse to facilitate successful transitions to adult health care and community-based services.

International and Interdisciplinary Identification of Health Care Transition Outcomes

IMPORTANCE There is a lack of agreement on what constitutes successful outcomes for the process of health care transition (HCT) among adolescent and young adults with special health care needs. OBJECTIVE To present HCT outcomes identified by a Delphi process with an interdisciplinary group of participants. DESIGN, SETTING, AND PARTICIPANTS A Delphi method involving 3 stages was deployed to refine a list of HCT outcomes. This 18-month study (from January 5, 2013, of stage 1 to July 3, 2014, of stage 3) included an initial literature search, expert interviews, and then 2 waves of a web-based survey. On this survey, 93 participants from outpatient, community-based, and primary care clinics rated the importance of the top HCT outcomes identified by the Delphi process. Analyses were performed from July 5, 2014, to December 5, 2014. EXPOSURES Health care transition outcomes of adolescents and young adults with special health care needs. MAIN OUTCOMES AND MEASURES Importance ratings of identified HCT outcomes rated on a Likert scale from 1 (not important) to 9 (very important). RESULTS The 2 waves of surveys included 117 and 93 participants as the list of outcomes was refined. Transition outcomes were refined by the 3 waves of the Delphi process, with quality of life being the highest-rated outcome with broad agreement. The 10 final outcomes identified included individual outcomes (quality of life, understanding the characteristics of conditions and complications, knowledge of medication, self-management, adherence to medication, and understanding health insurance), health services outcomes (attending medical appointments, having a medical home, and avoidance of unnecessary hospitalization), and a social outcome (having a social network). Participants indicated that different outcomes were likely needed for individuals with cognitive disabilities. CONCLUSIONS AND RELEVANCE Quality of life is an important construct relevant to HCT. Future research should identify valid measures associated with each outcome and further explore the role that quality of life plays in the HCT process. Achieving consensus is a critical step toward the development of reliable and objective comparisons of HCT outcomes across clinical conditions and care delivery locations.

Secondary analysis of primary and preventive services accessed and perceived service barriers by children with developmental disabilities and their families.

Children and youths with developmental disabilities (DD) have needs for more community-based services to address ongoing health, educational, employment, housing, transportation, and recreational concerns. Secondary data analysis was conducted to examine the array of services accessed and service obstacles to primary, preventive and special health care services of 102 children and youths with developmental disabilities. The two services most frequently reported as being used by families were SSI (29.4%) and MediCal (Californias Medicaid program) (27.8%). Speech therapy was the most frequently identified support service accessed by respondents (51%). Respondents identified a number of unaddressed concerns and perceived barriers to having these concerns addressed as it related to service referrals for speech therapy, nutrition services, dental services, and behavior management services.

The health care transition research consortium health care transition model: A framework for research and practice

The body of health care transition (HCT) research is in the early stages of development. One of the major limitations of this developing field of research is the lack of theoretically-directed studies. This research limitation has hindered understanding of the variables contributing to successful HCT. The inadequate understanding of HCT is due largely to the absence of an adequate conceptual model that addresses the complexity and the relationships amongst variables that influence HCT outcomes among adolescents and emerging adults with special health care needs (AEA-SHCN). Existing conceptual models do not sufficiently address the significant interrelationships amongst variables to explain, predict and/or control AEA-SHCNs biopsychosocial HCT outcomes. This article provides a description of a health care transition theoretical model developed by the international and interdisciplinary Health Care Transition Research Consortium (HCTRC) that can be applied for testing in research and serve as a framework for clinical practice and policymaking. The HCTRC model is composed of four domains that are considered integral to the HCT phenomenon: Individual, Family/Social Support, Environment, and the Health Care System. The HCTRC model specifies the variables, processes, and potential mediators and moderators that affect the HCT outcomes.

Health care transition for adolescents with special healthcare needs: Where is nursing?

The population of adolescents with special healthcare needs (ASHCN) surviving into adulthood has increased dramatically over the past two decades. Approximately, nine of every 10 children diagnosed with a chronic condition are expected to reach adulthood. Experts estimate nearly 750,000 ASHCN enter into adulthood each year. Advances in medical treatments, new technologies and scientific discoveries have all contributed to the increases in ASHCN life expectancies. As a result, new demands for services have emerged to address their clear needs for long-term services and supports. Foremost among the ASHCN service needs are healthcare transition services. Healthcare transition is recognized as a needed area of practice to facilitate ASHCN transfer of care from pediatric to adult healthcare and to support the acquisition of the developmental competencies needed to successfully transition to adulthood. Yet, few evidence-based and exemplary models of care exist. Healthcare transition research is in the early stages of development. The medical community has provided the leadership with the development of healthcare transition policy, practice, and research. As a result, policymaking, practice issues, and research have a prominent medically related focus. In contrast, the influence of nursing as it pertains to these areas of professional practice is limited. Opportunities exist for pediatric and child health nursing leaders to provide direction for greater involvement in this emerging and growing field of specialty practice.

Lessons learned from providing transition services to adolescents with special health care needs.

This article provides insight and information about obstacles adolescents with special health care needs (ASHCNs) face as they progress to adulthood. Descriptions of these challenges are based upon clinical experiences in providing transition services to youth by the service coordinator seen through the Creating Healthy Futures transition clinic. These obstacles were classified as those related to health care, employment, education, independent living, social and recreational skills, and the service system. Information is also provided on the strategies project staff developed to assist youth in dealing with the challenges of the transition obstacles they faced.

California healthy and ready to work transition health care guide: developmental guidelines for teaching health care self-care skills to children.

This article presents developmental guidelines that can be used by parents and nurses for teaching children health care self-care skills. These guidelines are intended to provide a framework for instructing parents and nurses about the developmentally appropriate skills children can learn to become self sufficient in managing their own health care needs. The guidelines are based on the developmental frameworks of Piaget and Erikson and self-care models of Orem. Although general in scope, these guidelines can be individualized to the needs of each child.

Uncharted Territory: Systematic Review of Providers' Roles, Understanding, and Views Pertaining to Health Care Transition

BACKGROUND Health care transition (HCT) for adolescents and emerging adults (AEA) with special health care needs is an emerging field of interdisciplinary field of practice and research that is based upon an intergenerational approach involving care coordination between pediatric and adult systems of health care. Informed understanding of the state of the HCT science pertaining to this group of providers is needed in order to develop and implement service programs that will meet the comprehensive needs of AEA with special health care needs. METHODS The authors conducted a systematic review of the literature on the transition from child to adult care for adolescents and emerging adults (AEA) with special health care needs from 2004 to 2013. Fifty-five articles were selected for this review. An adaptation of the PRISMA guidelines was applied because all studies in this review used descriptive designs. RESULTS Findings revealed lack of evidence due to the limitations of the research designs and methodology of the studies included in this systematic review. Study findings were categorized the following four types: adult provider competency, provider perspectives, provider attitudes, and HCT service models. The discipline of medicine was predominant; interdisciplinary frameworks based upon integrated care were not reported. Few studies included samples of adult providers. CONCLUSIONS Empirical-based data are lacking pertaining to the role of providers involved in this specialty area of practice. Evidence is hampered by the limitations of the lack of rigorous research designs and methodology.