Health Issues in Transition
Annotated Bibliography: Prepared for NSTTAC by James White, UNC Charlotte and Debbie
Gilmer, Healthy and Ready to Work National Resource Center
Health impacts all aspects of life. Success in the classroom, within the community,
and on the job requires that young people stay healthy. In transition planning,
families and professionals often consider academic and vocational performance. Planning
teams consider the implications of a student’s health and mental health needs less
frequently. To stay healthy, young people need an understanding of their health,
to participate in their health care decisions and to build skills in self care (see
www.hrtw.org). For youth and young adults with special health care needs the transition
from pediatric to adult care can be challenging, often because of different expectations
between pediatric and adult health care systems (Betz, 1998).
As outlined by the American Academy of Pediatrics, the American Academy of Family
Physicians, and the American College of Physicians-American Society of Internal
Medicine, the goal of transition in health care for young adults with special health
care needs 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 (AAP, AAFP,
ACP-ASIOM, 2002).
References
American Academy of Pediatrics, American Academy of Family Physicians, American
College of Physicians-American Society of Internal Medicine (2002). A consensus
statement on health care transitions for young adults with special health care needs.
Pediatrics, 110, 1304-1306.
Betz, C. L. (1998). Facilitating the transition of adolescents with chronic conditions
from pediatric to adult health care and community settings. Issues in Comprehensive
Pediatric Nursing, 21, 97-115.
Annotated Bibliography
Transition Planning for Youth with Special Health Needs
American Academy of Pediatrics, American Academy of Family Physicians, American
College of Physicians-American Society of Internal Medicine (2002). A consensus
statement on health care transitions for young adults with special health care needs.
Pediatrics, 110, 1304-1306.
- Provides a consensus statement approved as policy by the boards of the American
Academy of Pediatrics, the American Academy of Family Physicians, and the American
College of Physicians-American Society of Internal Medicine on the critical first
steps that the medical profession needs to take to realize the vision of a family-centered,
continuous, comprehensive, coordinated, compassionate, and culturally competent
health care system that is as developmentally appropriate as it is technically sophisticated
for young adults with special health care needs 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
Betz, C. L. (1999). Adolescents with chronic conditions: Linkages to adult service
systems. Pediatric Nursing, 25, 473-476.
- Provides an overview of services available to assist high school students with chronic
conditions in making the transition to postsecondary settings
Betz, C. L. (2000). California healthy and ready to work: Transition health care
guide: Developmental guidelines for teaching health care. Issues in Comprehensive
Pediatric Nursing, 23, 203-244.
- Provides developmental guidelines that can be used by parents and nurses to teach
health care self-care skills to children and youth
- 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
Betz, C. L. (2001). Use of 504 plans for children and youth with disabilities: Nursing
application. Pediatric Nursing, 27, 347-352.
- Provides information about the history of 504 plans
- Provides requirements for primary, secondary, and post-secondary settings
- Describes the role of nurses in schools and clinical settings in developing 504
plans
Betz, C. L. (2004). Adolescents in transition of adult care: Why the concern? Nursing
Clinics of North America, 39, 681-713.
- Described issues associated with transition planning for youth with congenital heart
disease (CHD).
- Describes a number of approaches to address the needs of this growing number of
youth with CHD including; issues related to employment, education, social relationships,
and independent living
- Provides recommendations for successful transitioning including youth-centered approaches,
service coordination, and referral to adult agencies
Betz, C. L. (2004). Transition of adolescents with special health care needs: Review
and analysis of the literature. Issues in Comprehensive Pediatric Nursing,
27, 179-241.
- Provides a review and analysis of 43 transition studies published from 1982 through
2003
- Describes limitations associated with these studies, including the lack of theoretical
frameworks, the use of valid and reliable instruments, and research designs lacking
adequate controls
Blomquist, K. B. (2006). Healthy and Ready to Work – Kentucky: Incorporating transition
into a state program for children with special health care needs. Pediatric Nursing,
32, 515-528.
- Describes a federally funded state program designed to improve coordination of services
and transition programming for youth with special needs in which nurses, in their
direct care and care coordination roles with youth and families, focus on:
- Health promotion
- Health care and condition management
- Transition to adult care with funding
- Development of life skills
- Opportunities for participation in the community
- Describes how nurses in community outreach focus on:
- Collaborative planning
- Access to information
- Setting higher standards and expectations for services
- Documentation
- Evaluation
Blum, R., White, P. H., & Gallay, L. (2005). Moving into adulthood for youth
with disabilities and serious health concerns. Network on Transitions to Adulthood
Policy Brief, 26. Philadelphia, PA: University of Pennsylvania, MacArthur Research
Network on Transitions to Adulthood and Public Policy. Retrieved May 19, 2009 from
http://www.transad.pop.upenn.edu/downloads/blum%20disabilities%20final.pdf.
- Summarizes critical steps for successful transition planning for youth with disabilities
or serious medical conditions which include:
- Planning should start early
- Involve the youth
- Include vocational programs
- Build a strong support system for the youth that includes the medical community,
family, friends, peers, and the larger community in which they live
Youth to Adult Healthcare Challenges
Betz, C. L. (1998). Facilitating the transition of adolescents with chronic conditions
from pediatric to adult health care and community settings. Issues in Comprehensive
Pediatric Nursing, 21, 97-115.
- 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
- Describes assessment and intervention strategies that can be used by the pediatric
nurse to facilitate successful transitions to adult health care and community-based
services
Betz, C. L., Redcay, G., & Tan, S. (2003). Self-reported health care self-care
needs of transition-aged youth: A pilot study. Issues in Comprehensive Pediatric
Nursing, 26, 159-181.
- Describes the self-reported health care self-care needs and skills of transition-aged
youth referred for transition services
- Findings revealed that youth with developmental disabilities had significantly higher
numbers of “no” responses in seven domains than youth with cancer and youth with
cancer had significantly higher numbers of “yes” responses in six domains than youth
with developmental disabilities
- Discusses research and practice implications
Betz, C. L. (2007). Facilitating the transition of adolescents with developmental
disabilities: Nursing practice issues and care. Journal of Pediatric Nursing,
22, 103-115.
- Provides an overview of salient issues that adolescents with developmental disabilities
face as they approach adulthood and the roles health care professionals have as
service coordinators, consultants, or direct service providers to ensure that the
health-related transition needs of the youth are met.
- Provides transition assessment, planning, and intervention strategies that can be
integrated into a comprehensive plan of care are discussed
Bryan, T., Stiles, N., Burstein, K., Ergul, C. & Chao, P. C. (2007). "Am
I supposed to understand this stuff?" Youth with special health care needs
readiness for transition. Education and Training in Developmental Disabilities,
42, 330-338.
- Presents the results for a phone survey in which youth with special healthcare needs
were asked about their:
- Educational and vocational goals
- Current healthcare
- Life experiences
- Social life
Davis, M. & Sondheimer, D. L. (2005). State child mental health efforts to support
youth in transition to adulthood. Journal of Behavioral Health Services Research,
32, 27-42.
- Presents the findings from interviews to determine the ability of state child mental
health (MH) systems to facilitate the transition to adulthood of adolescents in
their systems and identifies three roadblocks to successful transition:
- Continuity of services as youth age into adulthood is hampered because of generally
separate child and adult MH systems
- Lack of clarity about procedures to access adult MH services
- Lack of shared client planning between adult and child MH systems
Morningstar, M. E., Turnbull, H. R., Lattin, D. L., Umbarger, G. T., Reichard, A.,
& Moberly, R. L. (2001). Students supported by medical technology: Making the
transition from school to adult life. Journal of Developmental and Physical Disabilities,
13, 229-259.
- Reports on results from a longitudinal interview study regarding the transition
experiences of family members and students supported by medical technology. Three
major themes emerged:
- Future expectations of students and parents
- Implementation of transition planning
- Participation and involvement in transition planning
- Results indicate that the majority of students supported by medical technology appeared
to be receiving minimal planning during transition
O'Connell, B., Bailey, S., & Pearce, J. (2003). Straddling the pathway from
pediatrician to mainstream health care: Transition issues experienced in disability
care. Australian Journal of Rural Health, 11, 57-63.
- Describes strengths and limitations of health care and related services provided
to young adults with disabilities during the period of transition from the care
of a pediatrician to the mainstream health system
- Findings revealed a number of problems with the transition period:
- Lack of knowledge and support among pediatricians to manage the adolescent with
a disability
- Communication problems between all service providers
- The general lack of continuity of care between providers
Soanes, C., & Timmons, S. J. (2004). Improving transition: A qualitative study
examining the attitudes of young people with chronic illness transferring to adult
care. Child Health Care, 9, 102-112.
- Describes the attitudes of young people with chronic illness facing transition and
ways in which provision could be improved from a service-user’s perspective
- Findings indicate to increase the likelihood of successful transition, strategies
need to be informal, flexible, highly individualized and prepare adolescents steadily
for adult services
Health Insurance Issues
Callahan, S. T. & Cooper, W. O. (2007). Continuity of health insurance coverage
among young adults with disabilities. Pediatrics, 119, 1175-1180.
- Presents the results of a 36-month longitudinal study that compared the continuity
of health insurance coverage of students with and without disabilities
Gall, C., Kingsnorth, S., & Healy, H. (2006). Growing up ready: A shared management
approach. Physical and Occupational Therapy in Pediatrics, 26, 47-62.
- Presents a transition framework designed to facilitate a shared management approach
to assist youth with physical disabilities and their families plan for transition
to adulthood.
Lotstein, D. S., Inkelas, M., Hays, R. D, Halfon, N., & Brook, R. (2008). Access
to care for youth with special health care needs in the transition to adulthood.
Journal of Adolescent Health, 43, 23-29.
- Describes access to care and identifies factors associated with access for low-income
young adults who aged out of a public program for children with special health care
needs. Survey results found:
- Insurance gaps and delayed care are prevalent among these low-income young adults
despite ongoing health problems
- Greater transition support might improve access by linking them with a usual source
of care, identifying insurance options, and encouraging regular use of care
Health Care Education for Youth
Gillman, D., & Schlicht, B (2007). Transition to adult health care: A training
guide in three parts In Healthy and Ready to Work: A Series of Materials Supporting
Youth With Special Health Care Needs. Waisman Center, University of Wisconsin, University
Center for Excellence in Developmental Disabilities, Madison, WI. Retrieved June
4, 2009 from
http://www.waisman.wisc.edu/cedd/cifr.html.
Training guide on how to conduct a workshop focusing on preparing youth with special
health care needs for adult life. The workbook and pocket guide can be used together
as:
- A self-directed study program for a young person with special health care needs
who is capable of reading through the workbook and pocket guide independently and
is interested in doing so
- A one-on-one teaching tool with a young person and a learning partner who can provide
direction on how to use the workbook and pocket guide
- The foundation for group workshops for a variety of audiences including teens and/or
young adults with special health care needs, parents of children and youth with
special health care needs, community based professionals and partners interested
in working with CYSHCN and their families
King, G. A., Baldwin, P. J., Currie, M., & Evans, J. (2005) Planning successful
transitions from school to adult roles for youth with disabilities. Children's Health
Care, 34, 193-216.
- Provides a conceptual model and review of the effectiveness of approaches for providing
transition education and planning services for youth with disabilities. The model
incorporates four approaches:
- Skills training
- Prevocational/vocational guidance
- Client-centered approach
- Ecological/experiential approach
- The model links these approaches to commonly used transition strategies, which reflect
the personal, person–environment, and environmental levels of intervention
Practitioner Roles
Betz, C. L. (2003). Nurse's role in promoting health transitions for adolescents
and young adults with developmental disabilities. Nursing Clinics of North America,
38, 271-89.
- Discusses the nurse’s role in promoting healthy and culturally competent transitions
for adolescents with developmental disabilities
- Examines the impact of cultural factors influencing the youth’s transition process
- Includes recommendations for addressing these needs within the context of nursing
practice beginning 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
Betz, C. L., & Redcay, G. (2005). Dimensions of the transition service coordinator
role. Journal of Specialty Pediatric Nursing, 10, 49-59.
- Describes a role for advanced practice nurses as transition service coordinators
(TSC) to provide highly specialized transition services to this group of youth in
pediatric settings
U.S. Department of Health and Human Services. (2005). The Surgeon General’s Call
To Action to Improve the Health and Wellness of Persons with Disabilities. Author.
- Presents four goals to help people with disabilities experience full, rewarding,
and healthy lives as contributing members of their communities:
- Increase understanding nationwide that people with disabilities can lead long, healthy,
and productive lives
- Increase knowledge among health care professionals and provide them with tools to
screen, diagnose, and treat with dignity the whole person with a disability
- Increase awareness among people with disabilities of the steps they can take to
develop and maintain a healthy lifestyle.
- increase accessible health care and support services to promote independence for
people with disabilities
Ziring, P. R., Brazdziunas, D., & Cooley, W. C. (2000). The role of the pediatrician
in transitioning children and adolescents with developmental disabilities and chronic
illnesses from school to work or college. Pediatrics, 106, 854-856.
- Describes the role of pediatricians in the successful transition from school to
adult settings for young people with developmental disabilities and chronic illnesses
includes promotion of self-advocacy and self-determination as well as knowledge
of key federal laws effecting vocational education
This document was produced under U.S. Department of Education, Office of Special
Education Programs Grant No. H326J050004. Marlene Simon-Burroughs served as the
project officer. The views expressed herein do not necessarily represent the positions
or polices of the Department of Education. No official endorsement by the U.S. Department
of Education of any product, commodity, service or enterprise mentioned in this
publication is intended or should be inferred. This product is public domain. Authorization
to reproduce it in whole or in part is granted. While permission to reprint this
publication is not necessary, the citation should be: National Secondary Transition
Technical Assistance Center (October, 2009) Interagency Collaboration Annotated
Bibliography.Charlotte, NC, NSTTAC.
