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 postsecondary 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, 2021 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, 2020 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.