Dimensions of the transition service coordinator role.
Betz CL, Redcay G. University of Southern California Center for Excellence in Developmental Disabilities, Children’s Hospital, Los Angeles, USA. J Spec Pediatr Nurs. 2005 Apr-Jun;10(2):49-59.
ISSUES AND PURPOSE: This article describes the development and implementation of an innovative advanced practice role, as a transition service coordinator for nurses who work with adolescents with special healthcare needs. Transition services for adolescents with special healthcare needs is an area of growing clinical need requiring that all healthcare professionals, including advanced practice nurses develop new clinical knowledge and skills to practice effectively.
CONCLUSION: This emerging specialty area will require advanced practice nurses to provide direct services blending both pediatric and adult healthcare needs and to function in advanced practice roles such as case managers who can ensure the coordination of services between these two very different systems of care while promoting the youth’s acquisition of goals for adulthood. This nursing role was first created to provide and coordinate transition services to youth seen in a piloted clinic titled Creating Healthy Futures.
PRACTICE IMPLICATIONS: This article describes the various components of this nursing role that incorporated the advanced practice dimensions of clinical expert, consultant, change agent, leader, researcher, and educator that can be replicated in other clinical settings.
Enhancing success in transition service coordinators: use of transformational leadership.
Rearick E. Community Health Nursing and Leadership in Nursing at Worcester State College in Worcester, Massachusetts, USA. emrearick@gmail.com Prof Case Manag. 2007 Sep-Oct;12(5):283-7.
PURPOSE: The lifespan of children with special healthcare needs has been extended because of improved technology and medical advances. Successful transition to the adult arena of healthcare, social services, and education by adolescents with special healthcare needs (ASHCN) is lacking. The transition service coordinator (TSC) is a multifaceted role of advanced practice nursing that provides highly specialized transition services to adolescents with special healthcare needs. The use of key concepts from the transformational leadership theory may improve healthcare outcomes.
PRIMARY PRACTICE SETTINGS: This article applies to pediatric and adult primary care and case management services that serve adolescents with special healthcare needs.
CONCLUSION: Employing key concepts of transformational leadership theory will enhance the success of the TSC to improve both collaboration among stakeholders in the transitional team and young adults’ transition to the world of adult services. IMPLICATIONS FOR CASE MANAGEMENT PRACTICE: Enhanced communication resulting in improved sharing of information, understanding of the stakeholder roles, and provision of formal linkages between pediatric and adult medical providers is a significant outcome affecting the ASHCN. Improved collaboration will produce a smooth transition for the ASHCN to the world of adult social services education, and employment. Incorporating the transformational leadership dimensions of idealized influence, inspirational motivation intellectual stimulation, and individualized consideration will enhance the ability of the TSC to improve collaboration among stakeholders in the transitional team and the quality of services for the ASHCN.
Facilitating the transition of adolescents with developmental disabilities: nursing practice issues and care.
Betz CL. USC University Center for Excellence in Developmental Disabilities at Children’s Hospital Los Angeles, Los Angeles, CA 90027, USA. cbetz@chla.usc.edu J Pediatr Nurs. 2007 Apr;22(2):103-15.
The purpose of this article is to provide an overview of salient issues that adolescents with developmental disabilities face as they approach adulthood. For nurses who provide services to this population of youth, knowledge of these significant issues is essential to developing a youth-centered transition plan that addresses their comprehensive health needs. Health care professionals, including pediatric nurses, have important roles as service coordinators, consultants, or direct service providers to ensure that the health-related transition needs of the youth are met. Transition assessment, planning, and intervention strategies that can be integrated into a comprehensive plan of care are discussed.
Improving oral health for individuals with special health care needs.
Crall JJ. Section of Pediatric Dentistry, University of California, Los Angeles, USA. jcrall@dent.ucla.edu Pediatr Dent. 2007 Mar-Apr;29(2):98-104.
The purpose of this paper was to highlight information and issues raised in a keynote address for the American Academy of Pediatric Dentistry’s Symposium on Lifetime Oral Health Care for Patients with Special Needs held in November, 2006. Topics include: (1) relevant statistics and definitions; (2) the prevalence and impact of common oral diseases in individuals with special health care needs (ISHCN); (3) an overview of oral health care delivery for ISHCN; (4) key delivery system and policy issues; and (5) a synopsis of major contextual initiatives related to ISHCN. In light of the Academy’s primary interest in infants, children, and adolescents–including children with special health care needs–the major focus is on children. Significant oral health and oral health care issues for adults with special needs, however, generally parallel those for children and are of interest to the Academy, particularly as they relate to the transition from pediatric care to adult care, a critical period for extending the level of oral health and health trajectory established during childhood.
Nurse’s role in promoting health transitions for adolescents and young adults with developmental disabilities.
Betz CL. Department of Nursing, University of Southern California, University Center on Disability at Childrens Hospital, Los Angeles, CA, USA. cbetz@usc.edu Nurs Clin North Am. 2003 Jun;38(2):271-89.
This article examines the impact of cultural factors influencing the youth’s transition process and includes recommendations for addressing these needs within the context of nursing practice. Youth-centered transition planning begins with a comprehensive, culturally competent assessment of adolescent and family needs in order to foster youth autonomy and family support during this important stage of development. Nurses who work with youth with developmental disabilities are faced with many questions from youth and families regarding the how, what, when, and where of transition planning, such as “Where do I find an adult health care provider who has the clinical expertise and sensitivity to my disability concerns?” and “Where can I get health insurance coverage when I “age out” of the health insurance program I am currently enrolled in?” The questions youth and families have not only reflect their needs for services and supports, but also represent the cultural context of their experiences. Who is this youth who is fast growing up, soon to become an adult? What has been this young person’s experiences as a boy or a girl, a person with a developmental disability, a member of his or her family, and a member of the community? Each youth’s experiences have an enormous impact shaping his or her progression through adolescence, and the impact continues with adult development. Nurses can serve as pivotal members of the team assisting these youths with developmental disabilities and their families in confronting the challenges and excitement of successfully transitioning to adulthood.
Perspectives on transitions: rethinking services for children and youth with developmental disabilities.
Rosenbaum P, Stewart D. School of Rehabilitation Science, and CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, Canada. rosenbau@mcmaster.ca Arch Phys Med Rehabil. 2007 Aug;88(8):1080-2.
Transition to adulthood for youth with developmental disabilities has become an important concern internationally of service providers working with these young people. Reflecting on the useful review by Binks and colleagues in this issue of the Archives, we argue as developmentalists that this is an ideal time to step back from our traditional preoccupation with “treatment” of childhood disability and to reconsider broadly what our goals for intervention ought to be. We invoke the concepts of the International Classification of Functioning, Health and Disability framework and draw on research that taps the voices of young people with disabilities-voices we believe have a lot to tell us about what has and has not worked for them. We suggest that there are unparalleled opportunities to enhance transition to adulthood for young people with developmental disabilities, in part by a feed-forward of the best of childhood services, and to work to prevent many of the difficulties faced by the current generation making this challenging transition.
Survey of primary care pediatricians on the transition and transfer of adolescents to adult health care.
Burke R, Spoerri M, Price A, Cardosi AM, Flanagan P. Warren Alpert School of Medicine of Brown University, Division of General Academic Pediatrics, Hasbro Children’s Hospital, Department of Pediatrics, Providence, RI 02903, USA. robert_burke@brown.edu Clin Pediatr (Phila). 2008 May;47(4):347-54. Epub 2008 Jan 7.
The transition and transfer from pediatrics to adult health care of youth with and without special health care needs has become a focus of professional organizations, health care insurers, national policy makers, and providers. To understand transition and transfer at a primary care practice level, all primary care pediatricians in Rhode Island were surveyed. Responses were received from 103 of 169 (60.9%) practicing pediatricians. Few responders had practice policies on transfer. Most reported that transition should begin later than recommended. Few practices communicated with adult providers at transfer. Most reported that health insurers were of little help in transfer. Many pediatric practices had young adults after age 22 and many with special needs. Responders reported adolescents left their practices by 1 of 6 methods. The survey indicates the need for further study of transition and transfer and the need for additional training and education if transfers are to be successful.
Transition to adulthood: the important role of the pediatrician.
Olsen DG, Swigonski NL. The Indiana Parent Information Network, Inc, Indianapolis, Indiana, USA. Pediatrics. 2004 Mar;113(3 Pt 1):e159-62.
This article, written by a parent of 2 youths with special health care needs and a pediatrician, builds on the Medical Home framework to give concrete examples of what physicians and families can and should do to prepare families for transition(s). The article consists of 3 parts. The first part is an introduction giving an overview of the importance of transition. “Developing a Life (not Illness) Plan: Begin With the End in Mind,” emphasizes that no matter how challenging the disability or compromising the chronic illness, we owe it to our children to take the risk of thinking about the future and beginning to help them to develop a life (not illness) plan. The third part, “With a Little Help from My Friends,” looks at how linking families with other parents, young adults, and adults living with disabilities and serious chronic illness can be a source of information to both families and physicians as they plan for the future.
Transition of care: health care professionals’ view.
Por J, Golberg B, Lennox V, Burr P, Barrow J, Dennard L. Florence Nightingale School of Nursing and Midwifery, King’s College London, 57 Waterloo Road, London SE1 8WA, UK. jitna.por@kcl.ac.uk J Nurs Manag. 2004 Sep;12(5):354-61.
There is much anxiety regarding the transfer of adolescents with chronic illness to adult services. Transfer of patients can be haphazard if the transition has not been planned. Problems and obstacles to transition have been identified and discussed by various authors. The purpose of this small study was to explore the views and needs of health care professionals from one National Health Service trust regarding the transition of care for adolescents with a chronic condition from children’s to adult services and to identify possible ways to improve the current services for this particular group of young adults. The sample comprised 40 health care professionals, nurses from the children’s department and adult ward, doctors, psychologists, physiotherapists and pharmacists currently working in the same hospital trust. A postal survey was conducted. The data were analysed using descriptive statistics and content analysis. The main findings suggest that there is a need for a planned transition programme, supported by a clinical protocols and a specialist unit for adolescents. Health care professionals’ views of patients and family/carers’ needs and how such needs may be met were identified.
Transition programs in cystic fibrosis centers: perceptions of team members.
Flume PA, Taylor LA, Anderson DL, Gray S, Turner D.
Department of Medicine, Medical University of South Carolina, Charleston, South Carolina 29425, USA. flumepa@musc.edu Pediatr Pulmonol. 2004 Jan;37(1):4-7.
Comment in: Pediatr Pulmonol. 2004 Jan;37(1):1-3.
We previously surveyed cystic fibrosis (CF) center directors and adult patients with CF to assess their perceptions regarding transition from a pediatric to an adult setting. An important finding in those studies was a lack of standard programs for transfer of young adults with CF from pediatric to adult care settings. Patients with CF typically receive care from clinics utilizing a multidisciplinary approach, suggesting that every member of the CF team can impact the transition process. Our purpose in this study was to gain an appreciation for various team members’ perspectives on transition. An Internet survey was offered to all CF centers across the country to be completed by team members, excluding physicians. We received 291 completed surveys, nearly half completed by nurses, but our respondents included social workers, nutritionists, respiratory therapists, and a few team members with other training. Nearly half of the respondents work for both pediatric and adult teams. The majority of respondents (71.8%) reported that their adult patients receive care from an internist in a separate adult program, but nearly 20% reported that a pediatrician follows their adult patients. A minority thought that age (37.4% of respondents), marriage (16.2%), and pregnancy (27.1%) were criteria for transfer, though most (86.2%) suggested that patients should be transferred by age 21 years. Criteria precluding transfer included patient/family resistance (45%), disease severity (34%), and developmental delay (31.3%). It was uncommon (11.4%) for an introduction to the concept of transition at the time of diagnosis. Over one-half of patients did not meet the adult team until time of transfer. Team members’ perceptions of patients’ concerns were similar to what we had previously measured in physicians, again far greater than what we have measured in patients themselves. In many ways, what we have measured here in team members reflects what we have reported by physicians, demonstrating slow development of standard transition programs and an overestimate of patients’ concerns regarding transition. These differences may impede the successful transition of patients into an adult program. It is clear from this study that team members have an interest in and opinions on transition, and are likely play a vital role in the transition process. Standard programs of transition should be developed, and team members should be engaged in that process.
Understanding the role of health care providers during the transition of adolescents with disabilities and special health care needs.
Geenen SJ, Powers LE, Sells W. Center on Self-Determination, Oregon Institute on Disability and Development, Oregon Health Sciences University, Portland, Oregon 97202, USA. geenens@ohsu.edu J Adolesc Health. 2003 Mar;32(3):225-33.
PURPOSE: To evaluate the role of health care providers in the transition from pediatric to adult health care for adolescents with disabilities and special health care needs (SHCN) from both the families’ and providers’ perspectives.
METHODS: A total of 753 parents of adolescents with SHCN (e.g. developmental, physical, behavioral/emotional, learning, or health-related disabilities) were surveyed by questionnaire to assess their perceptions of their health care provider’s level of involvement in various transition activities and the extent to which they felt it was the provider’s responsibility to assist in a particular activity. One hundred forty-one health care providers (primarily pediatricians) completed a parallel survey to assess their level of participation in the same transition activities and the extent to which they felt it was their responsibility to assist with each transition activity. The questionnaire listed 13 different transition activities health providers may engage in to help young people prepare for adulthood and also asked questions about areas such as employment and health insurance. To investigate whether parents and providers share the same views regarding the involvement and responsibility of providers across the 13 transition activities, two sets of Student’s t-tests were calculated.
RESULTS: There were significant differences between providers and parents concerning both the level of provider involvement and the extent to which it was the provider’s responsibility to assist in various transition activities (e.g., health providers reported significantly more involvement than did parents for 11 of the 13 transition activities and, compared with parents, providers reported that it was more within their role to assist in these 11 transition activities).
CONCLUSIONS: The findings suggest a need for health care providers and parents to have open discussions about the nature and extent to which providers assist families in key transition activities.