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Health care transition for adolescents with special healthcare needs: Where is nursing?
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Nurs Outlook 61 (2013) 258e265
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Health care transition for adolescents with special healthcare needs: Where is nursing? Cecily L. Betz, PhD, RN, FAAN* Director of Nursing Training, Director of Research, University of Southern California University Center of Excellence for Developmental Disabilities, Clinical Associate Professor of Pediatrics, USC Keck School of Medicine, Los Angeles, CA
article info
abstract
Article history: Received 18 February 2012 Revised 28 July 2012 Accepted 20 August 2012
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. Cite this article: Betz, C. L. (2013, OCTOBER). Health care transition for adolescents with special healthcare needs: Where is nursing?. Nursing Outlook, 61(5), 258-265. http://dx.doi.org/10.1016/j.outlook.2012.08.009.
Medical and technological advances have contributed to longer life expectancies for children with special healthcare needs, with 90% of adolescents with special healthcare needs (ASHCN) reaching adulthood or approximately 750,000 ASHCN annually (Scal & Ireland, 2005). According to the 2009/2010 National Survey of Children with Special Health Care Needs, it is estimated that 15.1% or 11.2 million children have a special healthcare need. However, for ASHCN, ages 12 to 17 years, the prevalence rate increases to 18.4% (The Child and Adolescent Measurement Health Initiative, 2012a).
ASHCN in the 12 to 17 years age group accounted for 40.8%, or 4.5 million adolescents, which is the largest percentage of all children with special healthcare needs (The Child and Adolescent Measurement Health Initiative, 2012b). This upward trend in life expectancy exists worldwide. In Australia, nearly two-thirds (1.8 million) of youth and emerging adults (ages 16 to 24 years) have a chronic condition (including minor conditions such as allergic rhinitis). Of this number, approximately one-third (569, 2000) have a disabling condition (Australian Institute of Health and Welfare, 2010).
* Corresponding author: Dr. Cecily L. Betz, 4750 Sunset Blvd. MS #53, Los Angeles, CA 90027. E-mail address: [email protected] (C.L. Betz). 0029-6554/$ - see front matter Ó 2013 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.outlook.2012.08.009
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Our own rapidly increasing numbers of ASHCN transitioning to adulthood in comparison with prevalence rates ASHCN of the past has created a major public-health crisis. Formalized systems of care and programs are lacking to facilitate the transfer to adult healthcare and also to adult non-health services (e.g, education, employment). These gaps in services create disruptions in the access to adult healthcare, but also for services in education, job training, and employment, to name a few. These services are vital to providing needed resources and support for ASHCN to achieve the developmental tasks of adulthood and their goals and dreams for the future (Betz, & Nehring, 2007; Lotstein et al., 2009; Lotstein, McPherson, & Strickland, 2005). The growing enormity of this healthcare dilemma has provoked widespread calls, primarily from the pediatric medical community, to develop and implement new and innovative approaches within the healthcare service system to facilitate the ASHCN’s healthy transition to adulthood. Despite this ever growing recognition of this public health challenge, there has been a notable absence of engagement on this crucial issue by the pediatric and adult (referring to nurses who provide care to adults with childhood acquired conditions) nursing community. The focus of this paper is to examine both the disciplinary and interdisciplinary perspectives that have guided the development of the body of research and clinically driven literature pertaining to ASHCN healthcare transition. To date, the preponderance of the literature has been generated by the pediatric medical community, which has had a significant influence on the healthcare transition policy-making, the development of clinical models of practice, and the direction of research questions and problems investigated. Nursing’s contribution to this field of practice and body of literature has been limited (Betz, 2012, 2004). This paper will present the important healthcare transition policies, major themes and findings of this nascent body of research, as well as prominent examples of clinical models of healthcare transition practice presented in the literature, and educational initiatives. The discussion of these topics will reflect the minimal involvement of nursing in healthcare transition policymaking, practice, research, and education and its ramifications. The paper will conclude with a discourse of the opportunities for nursing to have a more influential effect on this specialty area, a specialty that has the potential to significantly improve the lives of ASHCN.
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for the first generation of ASHCN. Their life expectancies exceeded previous generations of those born with childhood chronic conditions for whom life-sustaining treatments did not exist. Conceiving what had been the inconceivable was a challenge as survivorship had been a prognostic hope, not yet a reality. The capacity of the child healthcare system was ill equipped and not yet prepared to meet the emerging service demands of coming generations of children and youth diagnosed with chronic conditions (Betz, 1998, 2004; Blum, 2002; Scal et al., 1999). Early on, pediatric and public health leaders recognized the inadequacies of the system of care and formulations of healthcare transition solutions were ambiguous. Then the United States Surgeon General, C. Everett Koop, stated in 1989, referring to the long-term survival and developmental needs of ASHCN, “.we don’t know how these milestones are altered by the presence of a chronic illness” (p. 50). Since then, continued efforts to define and describe healthcare transition have been generated almost exclusively by the medical community and have served as the guiding templates for the development of the literature and science in this emerging field of practice. The American Academy of Pediatrics (AAP) and Society of Adolescent Health ([SAH], formerly known as the Society of Adolescent Medicine [SAM]) have provided the medical community leadership in the U.S. and worldwide, producing policy statements and practice guidance on healthcare transition. Other pediatric specialty associations, such as the American College of Cardiology, American Society of Nephrology, and Children’s Oncology Group have contributed to this effort as well (AAP, 1996; AAP, American Academy of Family Practice [AAFP], & American College of Physicians (ACP), 2011; Andreoli et al., 2005; Blum et al., 1993; Children’s Oncology Group, 2008; Landzberg et al., 2001). One of the earliest definitions of transition was developed by the SAM in 1993, which stated that healthcare transition is the “.purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from childcentered to adult-oriented health care systems.that is uninterrupted, coordinated, developmentally appropriate, psychosocially sound, and comprehensive” (Blum et al., 1993, p. 570). The importance of the SAM definition is exemplified by its later reference in major United Kingdom’s policy documents in 2003, by the Royal College of Paediatrics and Child Health (RCPCH) and again in 2006 by the United Kingdom’s Department of Health, Child Health and Maternity Services Branch (DH-CH-MSB).
Defining Healthcare Transition Recent Developments Early Developments The concept of healthcare transition originated nearly two decades ago as a proposed service enhancement
A decade ago, a consensus statement defining healthcare transition was jointly issued by the AAP, AAFPAmerican Society of Internal Medicine (2002), which was a noteworthy development. It was the first
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collaborative effort of pediatric and adult medical associations (2002). This statement refers to healthcare transition as “. a dynamic, lifelong process that seeks to meet their individual [referring to adolescent] needs as they move from childhood to adulthood. The goal is to maximize lifelong functioning and potential through the provision of high-quality, developmentally appropriate health care services that continue uninterrupted as the individual moves from adolescence to adulthood. It is patient centered, and its cornerstones are flexibility, responsiveness, continuity, comprehensiveness, and coordination” (p. 1304). Nearly a decade later, this consensus group provided practice-based recommendations for healthcare transition planning for all youth beginning in early adolescence. The authors of this healthcare transition planning algorithm urged “primary care physicians, nurse practitioners and physician assistants as well as medical subspecialists.to adopt these materials and make this process specific to their settings and populations” (AAP, AAFP, & College of Physicians [ACP], 2011).
Nursing Involvement In contrast, the past two decades have been a period of quiescence by pediatric, child, and adult health nursing associations and leaders. The lack of involvement and participation in efforts to define the scope of nursing practice roles and responsibilities in healthcare transition has been noticeable. During that time, one pediatric nursing organization provided input on the role of nursing in healthcare transition, the National Association of Pediatric Nurse Practitioners (NAPNAP) (2008). In 2008, NAPNAP reaffirmed its original statement published in 2002, its Position Statement on the Parameters for Pediatric Nursing Practice that recommended that 21 years of age be the upper age limit for care provided by pediatric nurse practitioners (PNP) except in special circumstances as agreed upon by the emerging adult, family members (who serve as conservators) and the PNPs. The NAPNAP age parameter guidelines correspond to those issued by the AAP in 1988.
The aforementioned position statements emphasize a hierarchical configuration with the pediatrician as the lead professional who directs and oversees the team efforts with the providing of healthcare transition services. There is a notable lack of role delineation of the interdisciplinary team members, including that of nursing professionals in defining the scope of healthcare transition practice. In some of the policy reports, limited acknowledgement exists, if any, of the role of professional and advanced practice nurses in the healthcare transition process. In some instances, advanced practice nurses and physician assistants have been referred to collectively as comparable service providers in terms of their sphere of healthcare transition practice. To illustrate, NAPNAP recommended in 2008 that the AAP designation of a healthcare professional involved with providing healthcare transition services be changed from pediatrician to pediatric primary healthcare provider, to reflect an inclusive and interdisciplinary approach to care (AAP, 1996). The healthcare transition position statements issued by AAP, SAH, RCPCH, and the UK DH-CH-MSB have referred to other service components of healthcare transition besides the transfer process. These include vocational and educational referrals, and service coordination. Other healthcare transition service recommendations include self-management instruction to foster the adolescent’s development of self-reliance and the provision of family support programs to assist families with the adjustment issues arising from the developmental transition to adulthood (AAP, AAP, AAFP, ACP-ASIM, 2002; Betz & Nehring, 2007; Park, Adams, & Irwin, 2011). Expectations as to the types of services provided to address the range of ASHCN future planning needs for training, education, employment, community participation, and civic engagement have not been specified. Neither the designation of the transition team member nor the individual service responsibilities have been clearly articulated. In addition, any description of the appropriate transition team member who is expected to make referrals, coordinate services, and assess needs for health-related accommodations, etc., have yet to be produced.
Effects of the Medical Impact
Recommendations The leadership demonstrated primarily by the AAP, SAH, and other pediatric medical organizations has played a dominant role in shaping the development of the healthcare transition field of practice and the science. Consequently, this prevailing influence has led to a medically oriented focus with emphasis on the role of the physician in the provision of services, the transfer event involving movement to adult medical care, application of the medical home as the framework of care and focus on biomedical and service-oriented outcomes (AAP, AAFP, ACP, 2011; Burdo-Hartmanm & Patel, 2008).
The position statements on the scope of healthcare transition practice that are predicated upon an interdisciplinary framework of care would be strengthened by more accurately reflecting the service alignment and involvement of interdisciplinary team members. Of note, none of the position statements issued by AAP, SAM, or the consensus groups included representatives from pediatric nursing or other interdisciplinary organizations. In two instances, recognized nursing experts were invited to participate, but
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not as organizational representatives (AAP, 1996; AAP, AAFP-American Society of Internal Medicine [ASIM], 2002). In contrast, the Royal College of Nursing was involved with the aforementioned United Kingdom documents. Participation of interdisciplinary organizational representatives, that included nurses would more appropriately crystallize efforts to describe the scope of interdisciplinary healthcare transition practice. This is an opportunity for pediatric and adult nursing organizations to collectively formulate a comprehensive, inclusive, and interdisciplinary position statement on ASHCN healthcare transition. Additional discussion on implications for pediatric and adult nursing practice will be found later in the Implications section of this paper. Healthcare transition policymaking seen in the work generated in the medical community has provided the guidelines for the development and implementation of practice models and research efforts. The following section will highlight the influence of medically derived policies on most of the practice models described in the literature.
Health Care Transition Service Models Service Model Characteristics Healthcare transition, although recognized as a salient service component for ASHCN over the past two decades, remains a field of practice and research that is seeking direction. Researchers and clinical experts are exploring ways to develop and implement healthcare transition services that will facilitate ASHCN acquisition of goals for the future, including becoming competent managers of their own care and becoming consumers of health services. Evidence-based approaches to provide healthcare transition services remain elusive. The difficulties associated with the development of service models have been the challenge of making operational the essence of what constitutes healthcare transition services. A healthcare transition lexicon to describe the nature of the service model is needed. The lexicon must delineate the scope of the problem’s characteristics. It needs to outline methods of assessment for diagnostic or problem identification purposes and the application of prescriptive and ongoing interventions. A comprehensive healthcare-transition service framework of care for diagnosing ASHCN who have difficulties in achieving the requisite healthcare transition-related developmental, behavioral, and psychosocial competencies is lacking. A healthcare transition framework is needed to explain the factors associated with successful and problematic entry into adulthood, which may help to explain the proliferation of clinical and research literature focus emphasizing the transfer from pediatric to adult healthcare.
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Emphasis on the transfer component of healthcare transition is reflective of the predominance of the medical focus in this emerging field of practice and research. The outcomes investigated reflect those directly linked to the scope of pediatric medical practice. Additionally, care outcomes related to the transfer function of healthcare transition can be more easily operationalized using service-related indices such as identification and access to adult healthcare providers, frequency of provider visits, hospitalizations, emergency department visits, and identification of condition-related complications, such as graft loss (Cadario et al., 2009; Latzman et al., 2011; van Staa, Jedeloo, van Meeteren, & Latour, 2011). Typical models of pediatric and child health services, based on the medical framework, have been developed with evidence-based standards of care directed to the prevention, treatment, and long-term management of well-defined diagnostic conditions. This is unlike the healthcare-transition service model, which embodies domains of care associated not only with the biochemical domain but also with the developmental, behavioral, and psychosocial domains. Developmental, behavioral, and psychosocial healthcare transition domains such as level of adherence to treatment regimen, self-management knowledge and skills, behavioral changes, and the acquisition of the developmental competences of adulthood are outcomes that are more difficult to operationalize and measure. These domains are more challenging to measure due to the lack of reliable and valid instruments specific to HCT and the problems with longitudinally tracking ASHCN following their exit from pediatric and child healthcare systems for clinical and research purposes (Betz, & Smith, 2011; Malmood, Dicianno, & Bellin, 2011; Williams et al., 2011). Findings reported from a national survey conducted in the U.S. and descriptive studies of healthcare transition programs have provided insights to enlarge our understanding primarily about the healthcare transition component of care, the medically oriented transfer of care. Just over a decade ago, findings from a U.S. nationwide survey, which gathered descriptive data of 122 HCT programs revealed that there were two basic HCT program types: adolescent focused and condition focused. Adolescent focused (38%) programs served adolescents using a noncategorical approach. They viewed the adolescent concerns as foremost service priorities. In contrast, condition-focused programs were directed to serving diagnostic-specific groups (62%) aimed at addressing the health-related concerns associated with the condition. The primary service emphasis of transition programs in the survey was the provision of medical services; fewer than 50% of programs surveyed provided career or vocational services, self-advocacy, or health-education services. Most programs (77%) provided case management services wherein social workers (45%) were identified slightly more often than nurses (40%) as the case managers. Less than half of the programs (47%)
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reported that nurses were members of the transition team (Scal, Evans, Blozis, Okinow, & Blum, 1999). The body of literature on healthcare transition programs closely aligns with these national findings, but most research has been generated by the medical community. The focus of these studies have been on the transfer of care and medically related issues related to condition stability, such as metabolic control as evidenced by glycated hemoglobin (HbA1c) and transplant retention (Cadario et al., 2009; Court, 1991, 1993; Eiser et al., 1993; Watson, 2000). Several different medically directed models of care have been described whose primary aim was to facilitate the transfer of care to adult medical care. These models have primarily involved three types of transfer services as follows. Several studies have reported findings associated with services provided jointly by pediatric and adult physicians for a defined period of time (Appleton, Chadwick, & Sweeney, 1997; Boyle, Farukhi, & Nosky, 2001; Kipps et al., 2002; Kone-Paut, Piram, Guillaume, & Tran, 2007; McDonagh et al., 2007). Clinics specifically designed for adolescents that might be described as “interim” or connecting programs between pediatric and adult health services have also been reported (Bent et al., 2002; Kipps et al., 2002; Price et al., 2011). The adolescent-oriented conduit program is designed to receive transfers from pediatric care with the goal to eventually initiate transfers to adult care. Other programs have identified a hand-over process involving the referral to the adult provider (Dabadie et al., 2008; Kennedy, Sloman, Douglass & Sawyer, 2007; Cadario et al., 2009). A letter of introduction to the adult provider, a brief jointly held appointment with the youth and family involving both pediatric and adult providers are examples of this transfer service.
Model Limitations Many of these studies were descriptive, cross-sectional designs. Several studies reported the levels of satisfaction, perceptions regarding the service program, and concerns about their healthcare transition experience (Cadario et al., 2009; Dabadie et al., 2008; McDonagh et al., 2007). Other studies used retrospective approaches involving the extraction of data from ASHCN charts. Outcomes measured in these studies included biochemical indices, clinic attendance, and follow-up appointments with adult healthcare providers (Cadario et al., 2009). Few programs have reported comprehensive approaches to services that included service coordination and referrals to transition and adult agencies, focus on the development of condition-specific selfmanagement and navigational skills and access to postsecondary programs (Betz, & Redcay, 2003; Latzman et al., 2011). Although these care components have been identified as service ideals in the policy statements of the medical community, the clinical achievements of responsible service provider and the
description of the service itself have been ambiguous (AAP, 1996; AAP, AAFP, ACP, 2011; AAP, AAFP, ACPASIM, 2002; RCPCH, 2003; UK DH-CH-MSB, 2006). Crucial in the development and implementation of healthcare transition models of care, yet rarely addressed, is the provision of services that foster young people’s acquisition of competencies in managing their own care and learning to become adept consumers of health services. Achievement of these outcomes necessitates not only learning the “core” selfmanagement skills associated with the ongoing treatment regimen, but also the “peripheral,” yet no less important, skills to become an informed and activated consumer. These skills include learning to troubleshoot equipment malfunctions, comparison shopping for nonreimbursable insurance-claim supplies, navigating the use of phone trees, and dealing with problematic providers. These important elements of preparing ASHCN for the future, especially when full brain maturity has not been achieved, will challenge clinicians and researchers to develop, implement and test healthcare transition services. These services are designed to foster the level of independence and autonomy needed to function successfully later in life (Bell & Sawyer, 2010; Rapley & Davidson, 2010). A competent, selfreliant ASHCN is a far more pertinent focus of service delivery than the transfer’s process logistics. ASHCN who has become self-sufficient with self-management competencies will learn to be adroit in managing manage the transfer process as he or she leaves the pediatric setting and subsequently in other circumstances as well, rather than remain dependent on service providers’ transfer assistance. A significant limitation with the development of comprehensive healthcare transition models is the lack of theoretical frameworks that explicates proposed relationships among variables (Betz, 2004; Betz & Smith, 2011; Wang, McGrath, & Watts, 2010). More recently, the medical home as been referred to as a model applied to healthcare transition services. The focus of this model is discipline-specific to pediatricians; its application to transition aged youth is limited (AAP, AAFP & ACP, 2011; Homer et al., 2008; Lotstein et al., 2005). Furthermore, the developing body of healthcare transition research is hampered by the lack of studies using control or comparison groups, the predominant use of cross-sectional designs, and the lack of instruments with strong psychometric properties (Betz, 2004; Binks, Barden, & Burke, 2007; Wang, McGrath & Watts, 2010). The role of nursing reported in these service models has not been fully explicated. However, in some instances, advanced practice nurses were referred as team members comparable to physician assistants (Meadows et al., 2009) or an allied health professional (Shaw, Southwood, & McDonagh, 2005). Rarely have studies identified the role responsibilities of nurses. A recent study described the role of the nurse as a case manager responsible for self-management training
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and service referrals to other community resources pertaining to health and self-management (Latzman et al., 2011). These nursing role perspectives reflect the discipline-specific focus in medical research papers. The concluding section of this paper will reflect on the opportunities available for nursing practice in healthcare transition that heretofore has not been emphasized.
Nursing Implications The foregoing discussion underscores that there are opportunities for pediatric and adult nurses to furnish needed leadership. Such leadership will advance integration of nursing philosophies of care into the development of the healthcare transition field. Policymaking, practice, and research will be positively influenced. This is a clear opportunity for nursing leaders to formulate visions of the contributions that nurses can make to the field of healthcare transition. By doing so, practicing nurses and nurse scientists will be encouraged to engage in this emerging and growing area of specialization. The time has come for leaders of pediatric and adult nursing organizations to formulate healthcare transition policies pertaining to the role of nursing and its collaborative role with our interdisciplinary colleagues. Adolescent and family-centered position statements that include the goals of healthcare transition are needed. Statements also need to clearly elucidate the scope of practice, not only for pediatric and adult nurses but also for our interdisciplinary colleagues as well. It would be innovative to have representatives from interdisciplinary organizations participate in this effort to model the ideal of collaboration that is needed in this field. Interdisciplinary collaboration would be a significant contribution to advancing the development of the field. Professional and specialty associations of pediatric and child health nurses have opportunities to formulate best and promising scope and standards of practice pertaining to healthcare transition. Development of the scope of practice and standards as has been done in other specialty areas of pediatric and child-health practice (Nehring, Roth, & Natvig, 2004) will provide professional and advanced practice nurses with the guidance to optimize their own involvement in healthcare transition. Advanced practice nurses are well qualified to function as expert and lead clinicians, service coordinators, educators, consultants, and evaluators of care with this service model. The healthcare transition practice model is an embodiment of the advanced practice nursing role (Betz, 2007; Betz & Redcay, 2002, 2003, 2005). Relatively few nursing studies have been conducted pertaining to healthcare transition. The nursing studies, as with studies conducted by the medical community and interdisciplinary colleagues, have relied primarily on descriptive designs (Madge & Bryon, 2002; Moon et al., 2009; Ridosch et al., 2011;
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Wojciechowski, Hurgia, & Dorn, 2002). In a few instances, other designs have been used such as a randomized control trial (Betz, Smith, & Macias, 2011). The nursing framework of practice, which is based on the application of comprehensive care to address youth and family biological, developmental, behavioral and psychosocial needs, is well suited to investigate the phenomenon of healthcare transition. Nurse scientists can contribute in important aspects, given their reliance on theoretical models, to guide the selection of variables for study, their appreciation to use instrumentation with strong psychometric properties and their understanding of applied research designs for clinical investigations.
Conclusion Healthcare transition, although acknowledged as a service need for the past two decades, has yet to become a service reality. Few exemplary and evidencebased models of healthcare transition exist that have been sustained with revenue generated from the services provided. The body of research to inform practitioners of evidence-based practices is scant. As discussed in this paper, the field of healthcare transition has been largely influenced by the medical community. The medical community has provided the leadership in policymaking, service development and research. Given their predominant role in shaping policy, practice, and research, the models of healthcare transition and areas of research investigation have reflected this disciplinary focus. It is an opportune time for nursing leaders in pediatric, child health, and adult nursing to initiate more visible efforts to infuse this area of practice with nursing and interdisciplinary perspectives. In collaboration with our interdisciplinary colleagues, nursing leaders can initiate the process of developing relevant policy and practice standards to inform the healthcare community of the role nurses and interdisciplinary professionals can have in healthcare transition. It is timely, that nursing leadership provides the needed direction and vision to help shape the best practice approaches to improve the quality of care provided to ASHCN and their families and shape their outcomes pertaining to biological, developmental, behavioral, and psychological domains. Additionally, the contributions of nurse scientists can broaden the scope of scientific inquiry pertaining to healthcare transition. Nursing scientists embody a scientific approach to conducting research investigations that readily aligns itself with investigating the comprehensive needs of ASHCN and their families. Research studies that use integrated and comprehensive frameworks to better understand and respond to the needs of ASHCN and their families will lead to the development of models of care to effect improved outcomes. Nursing can have an
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important role in shaping the direction and future policymaking, practice, and research of healthcare transition for ASHCN and their families.
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Latzman, R. D., Majumdar, S., Bigelow, C., Elkin, T. D., Smith, M. G., Megason, G. C., ., Iyer, R. (2011). Transitioning to adult care among adolescents with sickle cell disease: A transitioning clinic based on patient and caregiver concerns and needs. International Journal of Child and Adolescent Health, 3, 537e545. Lotstein, D. S., Ghandour, R., Cash, A., McGuire, E., Strickland, B., & Newacheck, P. (2009). Planning for health care transitions: results from the 2005-2006 National Survey of Children With Special Health Care Needs. Pediatrics, 123, e145ee152. Lotstein, D. S., McPherson, M., Strickland, B., & Newacheck, P. W. (2005). Transition planning for youth with special health care needs: Results from the National Survey of Children With Special Health Care Needs. Pediatrics, 115, 1562e1568. Malmood, D., Dicianno, B., & Bellin, M. (2011). Self-management, preventable conditions and assessment of care among young adults with myelomeningocele. Child: Care, health and development, 37, 861e865. Meadows, A. K., bosco, V., Tong, E., Fernandes, S., & Saidi, S. (2009). Transition and transfer from pediatric to adult care of young adults with complex congenital heart disease. Current Cardiology Reports, 11, 291e297. McDonagh, J. E., Southwood, T. R., Shaw, K. L., & British Society of Paediatric and Adolescent Rheumatology. (2007). The impact of a coordinated transitional care programme on adolescents with juvenile idiopathic arthritis. Rheumatology, 46, 161e168. Moons, P., Pinxten, S., Dedroog, D., Van Deyk, K., Gewillig, M., Hilderson, D., & Budts, W. (2009). Expectations and experiences of adolescents with congenital heart disease on being transferred from pediatric cardiology to an adult congenital heart disease program. Journal of Adolescent Health, 44, 316e322. National Association of Pediatric Nurse Practitioners (NAPNAP) (2008). NAPANP Position statement on age parameters for pediatric nurse practitioner practice. Retrieved on January 28, 2012 from http://download.journals.elsevierhealth.com/pdfs/ journals/0891-5245/PIIS0891524508000552.pdf. Nehring, W. M., Roth, S. P., Natvig, D., Betz, C. L., Savagge, T., & Krajicek, M. (2004). Intellectual & developmental disabilities nursing: Scope & standards of practice. Silver Spring, MD: American Nurses Association. Park, M. J., Adams, S. H., & Irwin, C. E., Jr. (2011). Health care services and the transition to young adulthood: Challenges and opportunities. Academic Pediatrics, 11, 115e122. Price, C. S., Corbett, S., Lewis-Barned, N., Morgan, J., Oliver, E., & Dovey-Pearce, G. (2011). Implementing a transition pathway in diabetes: A qualitative study of the experiences and suggestions of young people with diabetes. Child: Care, health and development, 37, 852e860. Rapley, P., & Davidson, P. M. (2010). Enough of the problem: A review of time for health care transition solutions for young adults with a chronic illness. Journal of Clinical Nursing, 19, 313e323.
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Ridosch, M., Braun, P., Roux, G., Bellin, M., & Sawin, K. (2011). Transition in young adults with spina bifida: A qualitative study. Child: Care, Health and Development, 37, 866e874. Royal College of Paediatrics and Child Health (2003). Bridging the gaps: Health care for adolescents. Retrieved on January 18, 2012 from www.rcpch.ac.uk. Scal, P., Evans, T., Blozis, S., Okinow, N., & Blum, R. (1999). Trends in transition from pediatric to adult health care services for young adults with chronic conditions. Journal of Adolescent Health, 24, 259e264. Scal, P., & Ireland, M. (2005). Addressing transition to adult health care for adolescents with special health care needs. Pediatrics, 115, 1607e1612. http://dx.doi.org/10.1542/peds. 2004-0458. The Child and Adolescent Health Measurment Initiative 2009/ 2010 National Survey of Children with Special Health Care Needs: CSHCN Prevelance and Demographics (2012a). Retrieved on January 27, 2012 from http://www.childhealth data.org/browse/survey/results?q¼1792&r¼1. The Child and Adolescent Health Measurment Initiative 2009/ 2010 National Survey of Children with Special Health Care Needs: CSHCN Prevelance and Demographics (2012b). Retreived on January 28, 2012 from http://www.childhealth data.org/browse/survey/results?q¼1792&r¼1&g¼376. United Kingdom Department of Health, Child Health and Maternity Services Branch (2006). Transition: Getting it right for young people. Improving the transition of young people with long term conditions from children’s to adult health services. Retrieved on January 18, 2012 from http://www.dh. gov.uk/en/Publicationsandstatistics/Publications/ PublicationsPolicyAndGuidance/DH_4132145. van Staa, A. L., Jedeloo, S., van Meeteren, J., & Latour, J. M. (2011). Crossing the transition chasm: Experiences and recommendations for improving transitional car of young adults, parents and providers. Child: Care, Health and Development, 37, 821e832. Watson, A. R. (2000). Non-compliance and transfer from paediatric to adult transplant unit. Pediatric Nephrology, 14, 469e472. Wang, G., McGrath, B. B., & Watts, C. (2010). Health care transitions among youth with disabilities or special health care needs: An ecological approach. Journal of Pediatric Nursing, 25, 505e530. http://dx.doi.org/10:1016/j.pedn.2009.07.003. Williams, T. S., Sherman, E. M. S., Dunseith, C., Mah, J. K., Blackman, M., Latter, J., Mohamed, I., ., Thornton, N. (2011). Measurement of medical self-management and transition readiness among Canadian adolescents with special health care needs. International Journal of Child and Adolescent Health, 3, 527e535. Wojciechowski, E., Hurtig, A., & Dorn, L. (2002). A natural history study of adolescents and young adults with sickle cell disease as they transfer to adult care: A need for case management services. Journal of Pediatric Nursing, 17, 18e27.
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Health care transition for adolescents with special healthcare needs: Where is nursing? Cecily L. Betz, PhD, RN, FAAN* Director of Nursing Training, Director of Research, University of Southern California University Center of Excellence for Developmental Disabilities, Clinical Associate Professor of Pediatrics, USC Keck School of Medicine, Los Angeles, CA
article info
abstract
Article history: Received 18 February 2012 Revised 28 July 2012 Accepted 20 August 2012
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. Cite this article: Betz, C. L. (2013, OCTOBER). Health care transition for adolescents with special healthcare needs: Where is nursing?. Nursing Outlook, 61(5), 258-265. http://dx.doi.org/10.1016/j.outlook.2012.08.009.
Medical and technological advances have contributed to longer life expectancies for children with special healthcare needs, with 90% of adolescents with special healthcare needs (ASHCN) reaching adulthood or approximately 750,000 ASHCN annually (Scal & Ireland, 2005). According to the 2009/2010 National Survey of Children with Special Health Care Needs, it is estimated that 15.1% or 11.2 million children have a special healthcare need. However, for ASHCN, ages 12 to 17 years, the prevalence rate increases to 18.4% (The Child and Adolescent Measurement Health Initiative, 2012a).
ASHCN in the 12 to 17 years age group accounted for 40.8%, or 4.5 million adolescents, which is the largest percentage of all children with special healthcare needs (The Child and Adolescent Measurement Health Initiative, 2012b). This upward trend in life expectancy exists worldwide. In Australia, nearly two-thirds (1.8 million) of youth and emerging adults (ages 16 to 24 years) have a chronic condition (including minor conditions such as allergic rhinitis). Of this number, approximately one-third (569, 2000) have a disabling condition (Australian Institute of Health and Welfare, 2010).
* Corresponding author: Dr. Cecily L. Betz, 4750 Sunset Blvd. MS #53, Los Angeles, CA 90027. E-mail address: [email protected] (C.L. Betz). 0029-6554/$ - see front matter Ó 2013 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.outlook.2012.08.009
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Our own rapidly increasing numbers of ASHCN transitioning to adulthood in comparison with prevalence rates ASHCN of the past has created a major public-health crisis. Formalized systems of care and programs are lacking to facilitate the transfer to adult healthcare and also to adult non-health services (e.g, education, employment). These gaps in services create disruptions in the access to adult healthcare, but also for services in education, job training, and employment, to name a few. These services are vital to providing needed resources and support for ASHCN to achieve the developmental tasks of adulthood and their goals and dreams for the future (Betz, & Nehring, 2007; Lotstein et al., 2009; Lotstein, McPherson, & Strickland, 2005). The growing enormity of this healthcare dilemma has provoked widespread calls, primarily from the pediatric medical community, to develop and implement new and innovative approaches within the healthcare service system to facilitate the ASHCN’s healthy transition to adulthood. Despite this ever growing recognition of this public health challenge, there has been a notable absence of engagement on this crucial issue by the pediatric and adult (referring to nurses who provide care to adults with childhood acquired conditions) nursing community. The focus of this paper is to examine both the disciplinary and interdisciplinary perspectives that have guided the development of the body of research and clinically driven literature pertaining to ASHCN healthcare transition. To date, the preponderance of the literature has been generated by the pediatric medical community, which has had a significant influence on the healthcare transition policy-making, the development of clinical models of practice, and the direction of research questions and problems investigated. Nursing’s contribution to this field of practice and body of literature has been limited (Betz, 2012, 2004). This paper will present the important healthcare transition policies, major themes and findings of this nascent body of research, as well as prominent examples of clinical models of healthcare transition practice presented in the literature, and educational initiatives. The discussion of these topics will reflect the minimal involvement of nursing in healthcare transition policymaking, practice, research, and education and its ramifications. The paper will conclude with a discourse of the opportunities for nursing to have a more influential effect on this specialty area, a specialty that has the potential to significantly improve the lives of ASHCN.
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for the first generation of ASHCN. Their life expectancies exceeded previous generations of those born with childhood chronic conditions for whom life-sustaining treatments did not exist. Conceiving what had been the inconceivable was a challenge as survivorship had been a prognostic hope, not yet a reality. The capacity of the child healthcare system was ill equipped and not yet prepared to meet the emerging service demands of coming generations of children and youth diagnosed with chronic conditions (Betz, 1998, 2004; Blum, 2002; Scal et al., 1999). Early on, pediatric and public health leaders recognized the inadequacies of the system of care and formulations of healthcare transition solutions were ambiguous. Then the United States Surgeon General, C. Everett Koop, stated in 1989, referring to the long-term survival and developmental needs of ASHCN, “.we don’t know how these milestones are altered by the presence of a chronic illness” (p. 50). Since then, continued efforts to define and describe healthcare transition have been generated almost exclusively by the medical community and have served as the guiding templates for the development of the literature and science in this emerging field of practice. The American Academy of Pediatrics (AAP) and Society of Adolescent Health ([SAH], formerly known as the Society of Adolescent Medicine [SAM]) have provided the medical community leadership in the U.S. and worldwide, producing policy statements and practice guidance on healthcare transition. Other pediatric specialty associations, such as the American College of Cardiology, American Society of Nephrology, and Children’s Oncology Group have contributed to this effort as well (AAP, 1996; AAP, American Academy of Family Practice [AAFP], & American College of Physicians (ACP), 2011; Andreoli et al., 2005; Blum et al., 1993; Children’s Oncology Group, 2008; Landzberg et al., 2001). One of the earliest definitions of transition was developed by the SAM in 1993, which stated that healthcare transition is the “.purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from childcentered to adult-oriented health care systems.that is uninterrupted, coordinated, developmentally appropriate, psychosocially sound, and comprehensive” (Blum et al., 1993, p. 570). The importance of the SAM definition is exemplified by its later reference in major United Kingdom’s policy documents in 2003, by the Royal College of Paediatrics and Child Health (RCPCH) and again in 2006 by the United Kingdom’s Department of Health, Child Health and Maternity Services Branch (DH-CH-MSB).
Defining Healthcare Transition Recent Developments Early Developments The concept of healthcare transition originated nearly two decades ago as a proposed service enhancement
A decade ago, a consensus statement defining healthcare transition was jointly issued by the AAP, AAFPAmerican Society of Internal Medicine (2002), which was a noteworthy development. It was the first
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collaborative effort of pediatric and adult medical associations (2002). This statement refers to healthcare transition as “. a dynamic, lifelong process that seeks to meet their individual [referring to adolescent] needs as they move from childhood to adulthood. The goal is to maximize lifelong functioning and potential through the provision of high-quality, developmentally appropriate health care services that continue uninterrupted as the individual moves from adolescence to adulthood. It is patient centered, and its cornerstones are flexibility, responsiveness, continuity, comprehensiveness, and coordination” (p. 1304). Nearly a decade later, this consensus group provided practice-based recommendations for healthcare transition planning for all youth beginning in early adolescence. The authors of this healthcare transition planning algorithm urged “primary care physicians, nurse practitioners and physician assistants as well as medical subspecialists.to adopt these materials and make this process specific to their settings and populations” (AAP, AAFP, & College of Physicians [ACP], 2011).
Nursing Involvement In contrast, the past two decades have been a period of quiescence by pediatric, child, and adult health nursing associations and leaders. The lack of involvement and participation in efforts to define the scope of nursing practice roles and responsibilities in healthcare transition has been noticeable. During that time, one pediatric nursing organization provided input on the role of nursing in healthcare transition, the National Association of Pediatric Nurse Practitioners (NAPNAP) (2008). In 2008, NAPNAP reaffirmed its original statement published in 2002, its Position Statement on the Parameters for Pediatric Nursing Practice that recommended that 21 years of age be the upper age limit for care provided by pediatric nurse practitioners (PNP) except in special circumstances as agreed upon by the emerging adult, family members (who serve as conservators) and the PNPs. The NAPNAP age parameter guidelines correspond to those issued by the AAP in 1988.
The aforementioned position statements emphasize a hierarchical configuration with the pediatrician as the lead professional who directs and oversees the team efforts with the providing of healthcare transition services. There is a notable lack of role delineation of the interdisciplinary team members, including that of nursing professionals in defining the scope of healthcare transition practice. In some of the policy reports, limited acknowledgement exists, if any, of the role of professional and advanced practice nurses in the healthcare transition process. In some instances, advanced practice nurses and physician assistants have been referred to collectively as comparable service providers in terms of their sphere of healthcare transition practice. To illustrate, NAPNAP recommended in 2008 that the AAP designation of a healthcare professional involved with providing healthcare transition services be changed from pediatrician to pediatric primary healthcare provider, to reflect an inclusive and interdisciplinary approach to care (AAP, 1996). The healthcare transition position statements issued by AAP, SAH, RCPCH, and the UK DH-CH-MSB have referred to other service components of healthcare transition besides the transfer process. These include vocational and educational referrals, and service coordination. Other healthcare transition service recommendations include self-management instruction to foster the adolescent’s development of self-reliance and the provision of family support programs to assist families with the adjustment issues arising from the developmental transition to adulthood (AAP, AAP, AAFP, ACP-ASIM, 2002; Betz & Nehring, 2007; Park, Adams, & Irwin, 2011). Expectations as to the types of services provided to address the range of ASHCN future planning needs for training, education, employment, community participation, and civic engagement have not been specified. Neither the designation of the transition team member nor the individual service responsibilities have been clearly articulated. In addition, any description of the appropriate transition team member who is expected to make referrals, coordinate services, and assess needs for health-related accommodations, etc., have yet to be produced.
Effects of the Medical Impact
Recommendations The leadership demonstrated primarily by the AAP, SAH, and other pediatric medical organizations has played a dominant role in shaping the development of the healthcare transition field of practice and the science. Consequently, this prevailing influence has led to a medically oriented focus with emphasis on the role of the physician in the provision of services, the transfer event involving movement to adult medical care, application of the medical home as the framework of care and focus on biomedical and service-oriented outcomes (AAP, AAFP, ACP, 2011; Burdo-Hartmanm & Patel, 2008).
The position statements on the scope of healthcare transition practice that are predicated upon an interdisciplinary framework of care would be strengthened by more accurately reflecting the service alignment and involvement of interdisciplinary team members. Of note, none of the position statements issued by AAP, SAM, or the consensus groups included representatives from pediatric nursing or other interdisciplinary organizations. In two instances, recognized nursing experts were invited to participate, but
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not as organizational representatives (AAP, 1996; AAP, AAFP-American Society of Internal Medicine [ASIM], 2002). In contrast, the Royal College of Nursing was involved with the aforementioned United Kingdom documents. Participation of interdisciplinary organizational representatives, that included nurses would more appropriately crystallize efforts to describe the scope of interdisciplinary healthcare transition practice. This is an opportunity for pediatric and adult nursing organizations to collectively formulate a comprehensive, inclusive, and interdisciplinary position statement on ASHCN healthcare transition. Additional discussion on implications for pediatric and adult nursing practice will be found later in the Implications section of this paper. Healthcare transition policymaking seen in the work generated in the medical community has provided the guidelines for the development and implementation of practice models and research efforts. The following section will highlight the influence of medically derived policies on most of the practice models described in the literature.
Health Care Transition Service Models Service Model Characteristics Healthcare transition, although recognized as a salient service component for ASHCN over the past two decades, remains a field of practice and research that is seeking direction. Researchers and clinical experts are exploring ways to develop and implement healthcare transition services that will facilitate ASHCN acquisition of goals for the future, including becoming competent managers of their own care and becoming consumers of health services. Evidence-based approaches to provide healthcare transition services remain elusive. The difficulties associated with the development of service models have been the challenge of making operational the essence of what constitutes healthcare transition services. A healthcare transition lexicon to describe the nature of the service model is needed. The lexicon must delineate the scope of the problem’s characteristics. It needs to outline methods of assessment for diagnostic or problem identification purposes and the application of prescriptive and ongoing interventions. A comprehensive healthcare-transition service framework of care for diagnosing ASHCN who have difficulties in achieving the requisite healthcare transition-related developmental, behavioral, and psychosocial competencies is lacking. A healthcare transition framework is needed to explain the factors associated with successful and problematic entry into adulthood, which may help to explain the proliferation of clinical and research literature focus emphasizing the transfer from pediatric to adult healthcare.
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Emphasis on the transfer component of healthcare transition is reflective of the predominance of the medical focus in this emerging field of practice and research. The outcomes investigated reflect those directly linked to the scope of pediatric medical practice. Additionally, care outcomes related to the transfer function of healthcare transition can be more easily operationalized using service-related indices such as identification and access to adult healthcare providers, frequency of provider visits, hospitalizations, emergency department visits, and identification of condition-related complications, such as graft loss (Cadario et al., 2009; Latzman et al., 2011; van Staa, Jedeloo, van Meeteren, & Latour, 2011). Typical models of pediatric and child health services, based on the medical framework, have been developed with evidence-based standards of care directed to the prevention, treatment, and long-term management of well-defined diagnostic conditions. This is unlike the healthcare-transition service model, which embodies domains of care associated not only with the biochemical domain but also with the developmental, behavioral, and psychosocial domains. Developmental, behavioral, and psychosocial healthcare transition domains such as level of adherence to treatment regimen, self-management knowledge and skills, behavioral changes, and the acquisition of the developmental competences of adulthood are outcomes that are more difficult to operationalize and measure. These domains are more challenging to measure due to the lack of reliable and valid instruments specific to HCT and the problems with longitudinally tracking ASHCN following their exit from pediatric and child healthcare systems for clinical and research purposes (Betz, & Smith, 2011; Malmood, Dicianno, & Bellin, 2011; Williams et al., 2011). Findings reported from a national survey conducted in the U.S. and descriptive studies of healthcare transition programs have provided insights to enlarge our understanding primarily about the healthcare transition component of care, the medically oriented transfer of care. Just over a decade ago, findings from a U.S. nationwide survey, which gathered descriptive data of 122 HCT programs revealed that there were two basic HCT program types: adolescent focused and condition focused. Adolescent focused (38%) programs served adolescents using a noncategorical approach. They viewed the adolescent concerns as foremost service priorities. In contrast, condition-focused programs were directed to serving diagnostic-specific groups (62%) aimed at addressing the health-related concerns associated with the condition. The primary service emphasis of transition programs in the survey was the provision of medical services; fewer than 50% of programs surveyed provided career or vocational services, self-advocacy, or health-education services. Most programs (77%) provided case management services wherein social workers (45%) were identified slightly more often than nurses (40%) as the case managers. Less than half of the programs (47%)
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reported that nurses were members of the transition team (Scal, Evans, Blozis, Okinow, & Blum, 1999). The body of literature on healthcare transition programs closely aligns with these national findings, but most research has been generated by the medical community. The focus of these studies have been on the transfer of care and medically related issues related to condition stability, such as metabolic control as evidenced by glycated hemoglobin (HbA1c) and transplant retention (Cadario et al., 2009; Court, 1991, 1993; Eiser et al., 1993; Watson, 2000). Several different medically directed models of care have been described whose primary aim was to facilitate the transfer of care to adult medical care. These models have primarily involved three types of transfer services as follows. Several studies have reported findings associated with services provided jointly by pediatric and adult physicians for a defined period of time (Appleton, Chadwick, & Sweeney, 1997; Boyle, Farukhi, & Nosky, 2001; Kipps et al., 2002; Kone-Paut, Piram, Guillaume, & Tran, 2007; McDonagh et al., 2007). Clinics specifically designed for adolescents that might be described as “interim” or connecting programs between pediatric and adult health services have also been reported (Bent et al., 2002; Kipps et al., 2002; Price et al., 2011). The adolescent-oriented conduit program is designed to receive transfers from pediatric care with the goal to eventually initiate transfers to adult care. Other programs have identified a hand-over process involving the referral to the adult provider (Dabadie et al., 2008; Kennedy, Sloman, Douglass & Sawyer, 2007; Cadario et al., 2009). A letter of introduction to the adult provider, a brief jointly held appointment with the youth and family involving both pediatric and adult providers are examples of this transfer service.
Model Limitations Many of these studies were descriptive, cross-sectional designs. Several studies reported the levels of satisfaction, perceptions regarding the service program, and concerns about their healthcare transition experience (Cadario et al., 2009; Dabadie et al., 2008; McDonagh et al., 2007). Other studies used retrospective approaches involving the extraction of data from ASHCN charts. Outcomes measured in these studies included biochemical indices, clinic attendance, and follow-up appointments with adult healthcare providers (Cadario et al., 2009). Few programs have reported comprehensive approaches to services that included service coordination and referrals to transition and adult agencies, focus on the development of condition-specific selfmanagement and navigational skills and access to postsecondary programs (Betz, & Redcay, 2003; Latzman et al., 2011). Although these care components have been identified as service ideals in the policy statements of the medical community, the clinical achievements of responsible service provider and the
description of the service itself have been ambiguous (AAP, 1996; AAP, AAFP, ACP, 2011; AAP, AAFP, ACPASIM, 2002; RCPCH, 2003; UK DH-CH-MSB, 2006). Crucial in the development and implementation of healthcare transition models of care, yet rarely addressed, is the provision of services that foster young people’s acquisition of competencies in managing their own care and learning to become adept consumers of health services. Achievement of these outcomes necessitates not only learning the “core” selfmanagement skills associated with the ongoing treatment regimen, but also the “peripheral,” yet no less important, skills to become an informed and activated consumer. These skills include learning to troubleshoot equipment malfunctions, comparison shopping for nonreimbursable insurance-claim supplies, navigating the use of phone trees, and dealing with problematic providers. These important elements of preparing ASHCN for the future, especially when full brain maturity has not been achieved, will challenge clinicians and researchers to develop, implement and test healthcare transition services. These services are designed to foster the level of independence and autonomy needed to function successfully later in life (Bell & Sawyer, 2010; Rapley & Davidson, 2010). A competent, selfreliant ASHCN is a far more pertinent focus of service delivery than the transfer’s process logistics. ASHCN who has become self-sufficient with self-management competencies will learn to be adroit in managing manage the transfer process as he or she leaves the pediatric setting and subsequently in other circumstances as well, rather than remain dependent on service providers’ transfer assistance. A significant limitation with the development of comprehensive healthcare transition models is the lack of theoretical frameworks that explicates proposed relationships among variables (Betz, 2004; Betz & Smith, 2011; Wang, McGrath, & Watts, 2010). More recently, the medical home as been referred to as a model applied to healthcare transition services. The focus of this model is discipline-specific to pediatricians; its application to transition aged youth is limited (AAP, AAFP & ACP, 2011; Homer et al., 2008; Lotstein et al., 2005). Furthermore, the developing body of healthcare transition research is hampered by the lack of studies using control or comparison groups, the predominant use of cross-sectional designs, and the lack of instruments with strong psychometric properties (Betz, 2004; Binks, Barden, & Burke, 2007; Wang, McGrath & Watts, 2010). The role of nursing reported in these service models has not been fully explicated. However, in some instances, advanced practice nurses were referred as team members comparable to physician assistants (Meadows et al., 2009) or an allied health professional (Shaw, Southwood, & McDonagh, 2005). Rarely have studies identified the role responsibilities of nurses. A recent study described the role of the nurse as a case manager responsible for self-management training
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and service referrals to other community resources pertaining to health and self-management (Latzman et al., 2011). These nursing role perspectives reflect the discipline-specific focus in medical research papers. The concluding section of this paper will reflect on the opportunities available for nursing practice in healthcare transition that heretofore has not been emphasized.
Nursing Implications The foregoing discussion underscores that there are opportunities for pediatric and adult nurses to furnish needed leadership. Such leadership will advance integration of nursing philosophies of care into the development of the healthcare transition field. Policymaking, practice, and research will be positively influenced. This is a clear opportunity for nursing leaders to formulate visions of the contributions that nurses can make to the field of healthcare transition. By doing so, practicing nurses and nurse scientists will be encouraged to engage in this emerging and growing area of specialization. The time has come for leaders of pediatric and adult nursing organizations to formulate healthcare transition policies pertaining to the role of nursing and its collaborative role with our interdisciplinary colleagues. Adolescent and family-centered position statements that include the goals of healthcare transition are needed. Statements also need to clearly elucidate the scope of practice, not only for pediatric and adult nurses but also for our interdisciplinary colleagues as well. It would be innovative to have representatives from interdisciplinary organizations participate in this effort to model the ideal of collaboration that is needed in this field. Interdisciplinary collaboration would be a significant contribution to advancing the development of the field. Professional and specialty associations of pediatric and child health nurses have opportunities to formulate best and promising scope and standards of practice pertaining to healthcare transition. Development of the scope of practice and standards as has been done in other specialty areas of pediatric and child-health practice (Nehring, Roth, & Natvig, 2004) will provide professional and advanced practice nurses with the guidance to optimize their own involvement in healthcare transition. Advanced practice nurses are well qualified to function as expert and lead clinicians, service coordinators, educators, consultants, and evaluators of care with this service model. The healthcare transition practice model is an embodiment of the advanced practice nursing role (Betz, 2007; Betz & Redcay, 2002, 2003, 2005). Relatively few nursing studies have been conducted pertaining to healthcare transition. The nursing studies, as with studies conducted by the medical community and interdisciplinary colleagues, have relied primarily on descriptive designs (Madge & Bryon, 2002; Moon et al., 2009; Ridosch et al., 2011;
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Wojciechowski, Hurgia, & Dorn, 2002). In a few instances, other designs have been used such as a randomized control trial (Betz, Smith, & Macias, 2011). The nursing framework of practice, which is based on the application of comprehensive care to address youth and family biological, developmental, behavioral and psychosocial needs, is well suited to investigate the phenomenon of healthcare transition. Nurse scientists can contribute in important aspects, given their reliance on theoretical models, to guide the selection of variables for study, their appreciation to use instrumentation with strong psychometric properties and their understanding of applied research designs for clinical investigations.
Conclusion Healthcare transition, although acknowledged as a service need for the past two decades, has yet to become a service reality. Few exemplary and evidencebased models of healthcare transition exist that have been sustained with revenue generated from the services provided. The body of research to inform practitioners of evidence-based practices is scant. As discussed in this paper, the field of healthcare transition has been largely influenced by the medical community. The medical community has provided the leadership in policymaking, service development and research. Given their predominant role in shaping policy, practice, and research, the models of healthcare transition and areas of research investigation have reflected this disciplinary focus. It is an opportune time for nursing leaders in pediatric, child health, and adult nursing to initiate more visible efforts to infuse this area of practice with nursing and interdisciplinary perspectives. In collaboration with our interdisciplinary colleagues, nursing leaders can initiate the process of developing relevant policy and practice standards to inform the healthcare community of the role nurses and interdisciplinary professionals can have in healthcare transition. It is timely, that nursing leadership provides the needed direction and vision to help shape the best practice approaches to improve the quality of care provided to ASHCN and their families and shape their outcomes pertaining to biological, developmental, behavioral, and psychological domains. Additionally, the contributions of nurse scientists can broaden the scope of scientific inquiry pertaining to healthcare transition. Nursing scientists embody a scientific approach to conducting research investigations that readily aligns itself with investigating the comprehensive needs of ASHCN and their families. Research studies that use integrated and comprehensive frameworks to better understand and respond to the needs of ASHCN and their families will lead to the development of models of care to effect improved outcomes. Nursing can have an
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important role in shaping the direction and future policymaking, practice, and research of healthcare transition for ASHCN and their families.
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