Skip to main content
SpringerLink
Log in

Nursing Initiatives and Future Directions for Transition Practice and Research

  • Chapter
  • First Online:
Transition from Pediatric to Adult Healthcare Services for Adolescents and Young Adults with Long-term Conditions

Abstract

Over the last decade, in particular, there has been a significant focus on how adolescents with long-term conditions can be prepared for the transition to adult services. There has been a commensurate increase in innovative nurse-led interventions for healthcare transition which is to be welcomed. Throughout this book, a range of innovative nurse-led interventions for transition have been presented. In this chapter, we summarise the concepts and outcomes that are important for adolescents in healthcare transition. Nurses can support adolescents’ empowerment by establishing a trusting relationship, valuing the adolescent’s perspective, creating positive environment and avoiding judgement. We learn how empowerment is associated with improved quality of life, well-being and clinical outcomes; and transition programmes need to be responsive, respectful, accessible, comprehensive, integrated and coordinated. The discussions of the varied transition interventions and nursing initiatives in this book illustrate and show that nurses play an essential role in the transition process in collaboration with other members of the multidisciplinary team. In these transition programmes, nurses hold pivotal roles as team leaders, designers and implementers of transition interventions, and as communicators between paediatric and adult services. Further research is needed to determine the key elements of transition programmes that lead to better outcomes as this knowledge will contribute to the design of efficient transition models of care in the future. Evaluation of nurse-led transition interventions remains relatively new, which raises questions about what is most appropriate, the associated challenges and potential solutions. The chapter concludes with recommendations and consideration of future directions for evidence-based transition practice, education and research.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 44.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 59.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

Notes

  1. 1.

    To avoid cumbersome repetition, in this chapter the term adolescents includes youth and young adults.

References

  • Acuna Mora M, Sparud-Lundin C, Bratt EL, Moons P. Person-centred transition programme to empower adolescents with congenital heart disease in the transition to adulthood: a study protocol for a hybrid randomised controlled trial (STEPSTONES project). BMJ Open. 2017;7(4):e014593.

    Article  PubMed  PubMed Central  Google Scholar 

  • Allen D, Cohen D, Hood K, Robling M, Atwell C, Lane C, et al. Continuity of care in the transition from child to adult diabetes services: a realistic evaluation study. J Health Serv Res Policy. 2012;17(3):140–8.

    Article  PubMed  Google Scholar 

  • American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, Transitions Clinical Report Authoring Group. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2011;128(1):182–200.

    Article  Google Scholar 

  • Ardoin SP. Transitions in rheumatic disease: pediatric to adult care. Pediatr Clin N Am. 2018;65(4):867–83.

    Article  Google Scholar 

  • Baker AC, Wiebe DJ, Kelly CS, Munion A, Butner JE, Swinyard MT, et al. Structural model of patient-centered communication and diabetes management in early emerging adults at the transfer to adult care. J Behav Med. 2019;

    Google Scholar 

  • Barr PJ, Scholl I, Bravo P, Faber MJ, Elwyn G, McAllister M. Assessment of patient empowerment--a systematic review of measures. PLoS One. 2015;10(5):e0126553.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  • Beal SJ, Riddle IK, Kichler JC, Duncan A, Houchen A, Casnellie L, et al. The associations of chronic condition type and individual characteristics with transition readiness. Acad Pediatr. 2016;16(7):660–7.

    Article  PubMed  Google Scholar 

  • Bensted R, Hargreaves DS, Lombard J, Kilkelly U, Viner RM. Comparison of healthcare priorities in childhood and early/late adolescence: analysis of cross-sectional data from eight countries in the Council of Europe Child-friendly Healthcare Survey, 2011. Child Care Health Dev. 2015;41(1):160–5.

    Article  CAS  PubMed  Google Scholar 

  • Berg CJ, Stratton E, Esiashvili N, Mertens A. Young adult Cancer Survivors' experience with Cancer treatment and follow-up care and perceptions of barriers to engaging in recommended care. J Cancer Educ. 2016;31(3):430–42.

    Article  PubMed  PubMed Central  Google Scholar 

  • Betz CL. A systems approach to adolescent transitions: an opportunity for nurses. J Pediatr Nurs. 1996;11(5):271–2.

    Article  CAS  PubMed  Google Scholar 

  • Betz CL. Facilitating the transition of adolescents with chronic conditions from pediatric to adult health care and community settings. Issues Compr Pediatr Nurs. 1998a;21(2):97–115.

    Article  CAS  PubMed  Google Scholar 

  • Betz CL. The forgotten population of adolescents. J Pediatr Nurs. 1998b;13(4):199.

    Article  CAS  PubMed  Google Scholar 

  • Betz CL. SPN position statement: transition of pediatric patients into adult care. J Pediatr Nurs. 2017;35:160–4.

    Article  PubMed  Google Scholar 

  • Betz CL, Redcay G. Dimensions of the transition service coordinator role. J Spec Pediatr Nurs. 2005;10(2):49–59.

    Article  PubMed  Google Scholar 

  • Betz CL, Lobo ML, Nehring WM, Bui K. Voices not heard: a systematic review of adolescents' and emerging adults' perspectives of health care transition. Nurs Outlook. 2013;61(5):311–36.

    Article  PubMed  Google Scholar 

  • Betz CL, O'Kane LS, Nehring WM, Lobo ML. Systematic review: health care transition practice service models. Nurs Outlook. 2016;64(3):229–43.

    Article  PubMed  Google Scholar 

  • Bloom SR, Kuhlthau K, Van Cleave J, Knapp AA, Newacheck P, Perrin JM. Health care transition for youth with special health care needs. J Adolesc Health. 2012;51(3):213–9.

    Article  PubMed  Google Scholar 

  • Bravo P, Edwards A, Barr PJ, Scholl I, Elwyn G, McAllister M. Conceptualising patient empowerment: a mixed methods study. BMC Health Serv Res. 2015;15:252.

    Article  PubMed  PubMed Central  Google Scholar 

  • Burns K, Farrell K, Myszka R, Park K, Holmes-Walker DJ. Access to a youth-specific service for young adults with type 1 diabetes mellitus is associated with decreased hospital length of stay for diabetic ketoacidosis. Intern Med J. 2018;48(4):396–402.

    Article  CAS  PubMed  Google Scholar 

  • Callinan J, Coyne I. Arts-based interventions to promote transition outcomes for young people with long-term conditions: a review. Chronic Illn. 2018;1742395318782370

    Google Scholar 

  • Campbell F, Biggs K, Aldiss SK, O'Neill PM, Clowes M, McDonagh J, et al. Transition of care for adolescents from paediatric services to adult health services. Cochrane Database Syst Rev. 2016;4:CD009794.

    PubMed  Google Scholar 

  • Care Quality Commission. From the pond into the sea: children's transition to adult health services. London CQC; 2014.

    Google Scholar 

  • Castro EM, Van Regenmortel T, Vanhaecht K, Sermeus W, Van Hecke A. Patient empowerment, patient participation and patient-centeredness in hospital care: a concept analysis based on a literature review. Patient Educ Couns. 2016;99(12):1923–39.

    Article  PubMed  Google Scholar 

  • Colver A, Pearse R, Watson RM, Fay M, Rapley T, Mann KD, et al. How well do services for young people with long term conditions deliver features proposed to improve transition? BMC Health Serv Res. 2018;18(1):337.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Comparcini D, Simonetti V, Tomietto M, Leino-Kilpi H, Pelander T, Cicolini G. Children's perceptions about the quality of pediatric nursing care: a large multicenter cross-sectional study. J Nurs Scholarsh. 2018;50(3):287–95.

    Article  PubMed  Google Scholar 

  • Coyne I. Critical engagement with practice: being a human caring presence for children and their parents. Journal of Children’s and Young People’s Nursing. 2007;1(6):298.

    Article  Google Scholar 

  • Coyne I. Transition for adolescents and young adults with Cancer. In: Olsen PR, Smith S, editors. Nursing adolescents and young adults with Cancer: developing knowledge, competence and best practice. Cham: Springer International Publishing; 2018. p. 173–98.

    Chapter  Google Scholar 

  • Coyne I, Gallagher P. Participation in communication and decision-making: children and young people’s experiences in a hospital setting. J Clin Nurs. 2011;20(15–16):2334–43.

    Article  PubMed  Google Scholar 

  • Coyne I, Kirwan L. Ascertaining children’s wishes and feelings about hospital life. J Child Health Care. 2012;16(3):289–303.

    Article  Google Scholar 

  • Coyne I, Amory A, Gibson F, Kiernan G. Information-sharing between healthcare professionals, parents and children with cancer: more than a matter of information exchange. Eur J Cancer Care (Engl). 2016a;25(1):141–56.

    Article  CAS  Google Scholar 

  • Coyne I, Prizeman G, Sheehan A, Malone H, While AE. An e-health intervention to support the transition of young people with long-term illnesses to adult healthcare services: design and early use. Patient Educ Couns. 2016b;99(9):1496–504.

    Article  CAS  PubMed  Google Scholar 

  • Coyne B, Hallowell SC, Thompson M. Measurable outcomes after transfer from pediatric to adult providers in youth with chronic illness. J Adolesc Health. 2017a;60(1):3–16.

    Article  PubMed  Google Scholar 

  • Coyne I, Sheehan A, Heery E, While AE. Healthcare transition for adolescents and young adults with long-term conditions: Qualitative study of patients, parents and healthcare professionals’ experiences. J Clin Nurs. 2019;28(21–22):4062–76.

    Article  PubMed  Google Scholar 

  • Coyne I, Sheehan AM, Heery E, While AE. Improving transition to adult healthcare for young people with cystic fibrosis: a systematic review. J Child Health Care. 2017b;21(3):312–30.

    Article  PubMed  Google Scholar 

  • Crowley R, Wolfe I, Lock K, McKee M. Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child. 2011;96(6):548–53.

    Article  CAS  PubMed  Google Scholar 

  • Everitt IK, Gerardin JF, Rodriguez FH 3rd, Book WM. Improving the quality of transition and transfer of care in young adults with congenital heart disease. Congenit Heart Dis. 2017;12(3):242–50.

    Article  PubMed  Google Scholar 

  • Gabriel P, McManus M, Rogers K, White P. Outcome evidence for structured pediatric to adult health care transition interventions: a systematic review. J Pediatr. 2017;188:263–9.e15.

    Article  PubMed  Google Scholar 

  • Gleeson H. 'Part of the problem, part of the solution' - adult physicians' role in adolescent and young adult health. Clin Med. 2015;15(5):413–4.

    Article  Google Scholar 

  • Hargreaves DS. Learning to listen: delivering patient-centered care for adolescents. J Adolesc Health. 2014;55(4):463–4.

    Article  PubMed  Google Scholar 

  • Hargreaves DS, Lemer C, Ewing C, Cornish J, Baker T, Toma K, et al. Measuring and improving the quality of NHS care for children and young people. Arch Dis Child. 2019;104(7):618–21.

    Article  PubMed  Google Scholar 

  • Heery E, Sheehan AM, While AE, Coyne I. Experiences and outcomes of transition from pediatric to adult health Care Services for Young People with congenital heart disease: a systematic review. Congenital Heart Dis. 2015;10(5):413–27.

    Article  Google Scholar 

  • House SA, Coon ER, Schroeder AR, Ralston SL. Categorization of national pediatric quality measures. Pediatrics. 2017;139:4.

    Article  Google Scholar 

  • Jones MR, Hooper TJ, Cuomo C, Crouch G, Hickam T, Lestishock L, et al. Evaluation of a health care transition improvement process in seven large health care systems. J Pediatr Nurs. 2019;47:44–50.

    Article  PubMed  Google Scholar 

  • Le Roux E, Mellerio H, Guilmin-Crepon S, Gottot S, Jacquin P, Boulkedid R, et al. Methodology used in comparative studies assessing programmes of transition from paediatrics to adult care programmes: a systematic review. BMJ Open. 2017;7(1):e012338.

    Article  PubMed  PubMed Central  Google Scholar 

  • Lestishock L, Daley AM, White P. Pediatric nurse Practitioners' perspectives on health care transition from pediatric to adult care. J Pediatr Health Care. 2018;32(3):263–72.

    Article  PubMed  Google Scholar 

  • Los E, Ulrich J, Guttmann-Bauman I. Technology use in transition-age patients with type 1 diabetes: reality and promises. J Diabetes Sci Technol. 2016;10(3):662–8.

    Article  PubMed  PubMed Central  Google Scholar 

  • Maeng DD, Snyder SR, Davis TW, Tomcavage JF. Impact of a complex care management model on cost and utilization among adolescents and young adults with special care and health needs. Popul Health Manag. 2017;20(6):435–41.

    Article  PubMed  Google Scholar 

  • McDonagh JE, Hackett J, McGee M, Southwood T, Shaw KL. The evidence base for transition is bigger than you might think. Arch Dis Child Educ Pract Ed. 2015;100(6):321–2.

    Article  PubMed  Google Scholar 

  • McManus M, White P, Pirtle R, Hancock C, Ablan M, Corona-Parra R. Incorporating the six Core elements of health care transition into a Medicaid managed care plan: lessons learned from a pilot project. J Pediatr Nurs. 2015;30(5):700–13.

    Article  PubMed  Google Scholar 

  • McNicholas F, Adamson M, McNamara N, Gavin B, Paul M, Ford T, et al. Who is in the transition gap? Transition from CAMHS to AMHS in the Republic of Ireland. Irish Journal of Psychological Medicine. 2015;32(Special Issue 01):61–9.

    Article  CAS  PubMed  Google Scholar 

  • Merrick H, McConachie H, Le Couteur A, Mann K, Parr JR, Pearce MS, et al. Characteristics of young people with long term conditions close to transfer to adult health services. BMC Health Serv Res. 2015;15:435.

    Article  PubMed  PubMed Central  Google Scholar 

  • Michaud P-A, Schrier L, Ross-Russel R, van der Heijden L, Dossche L, Copley S, et al. Paediatric departments need to improve residents’ training in adolescent medicine and health: a position paper of the European academy of Paediatrics. Eur J Pediatr. 2018;177(4):479–87.

    Article  PubMed  Google Scholar 

  • Nakhla M, Bell LE, Wafa S, Dasgupta K. Improving the transition from pediatric to adult diabetes care: the pediatric care provider's perspective in Quebec, Canada. BMJ Open Diabetes Res Care. 2017;5(1):e000390.

    Article  PubMed  PubMed Central  Google Scholar 

  • National Clinical Programme for Rare Diseases Transition Subgroup. Model of care for transition from paediatric to adult healthcare providers in rare diseases. Dublin: Royal College of Physicians of Ireland; 2019.

    Google Scholar 

  • National Institute for Health and Care Excellence. Transition from children’s to adults’ services for young people using health or social care services: NICE guidelines. National Institute for Health and Care Excellence 2016.

    Google Scholar 

  • Nicolarsen J. Transition of adolescents and young adults with congenital heart disease: challenges, Progress, and future improvements. Pediatr Ann. 2017;46(6):e224–e8.

    Article  PubMed  Google Scholar 

  • Paramsothy P PhD MPH, Herron Ar PhD MA, Lamb MMP, Kinnett K Msn A, Wolff JP, Yang MM, et al. Health care transition experiences of males with childhood-onset Duchenne and Becker muscular dystrophy: findings from the muscular dystrophy surveillance tracking and research network (MD STARnet) health care transitions and other life experiences survey. PLoS currents. 2018;10.

    Google Scholar 

  • Pieters H, Iwaki T, Vickrey B, Mathern G, Baca C. "it was five years of hell": parental experiences of navigating and processing the slow and arduous time to pediatric resective epilepsy surgery. Epilepsy & behavior: E&B. 2016;62:276–84.

    Article  Google Scholar 

  • Raina R, Wang J, Sethi SK, Ferris M. Survey on health care transition services in pediatric nephrology. Clin Exp Nephrol. 2018;22(1):206–7.

    Article  PubMed  Google Scholar 

  • Sattoe JN, Hilberink SR, van Staa A, Bal R. Lagging behind or not? Four distinctive social participation patterns among young adults with chronic conditions. J Adolesc Health. 2014;54(4):397–403.

    Article  PubMed  Google Scholar 

  • Sawyer SM, Ambresin AE, Bennett KE, Patton GC. A measurement framework for quality health care for adolescents in hospital. J Adolesc Health. 2014;55(4):484–90.

    Article  PubMed  Google Scholar 

  • Saxby N, Beggs S, Battersby M, Lawn S. What are the components of effective chronic condition self-management education interventions for children with asthma, cystic fibrosis, and diabetes? A systematic review. Patient Educ Couns. 2019;102(4):607–22.

    Article  PubMed  Google Scholar 

  • Schultz AT, Smaldone A. Components of interventions that improve transitions to adult Care for Adolescents with Type 1 diabetes. J Adolesc Health. 2017;60(2):133–46.

    Article  PubMed  Google Scholar 

  • Segar J, Rogers A, Salisbury C, Thomas C. Roles and identities in transition: boundaries of work and inter-professional relationships at the interface between telehealth and primary care. Health Soc Care Community. 2013;21(6):606–13.

    PubMed  Google Scholar 

  • Sheehan AM, While AE, Coyne I. The experiences and impact of transition from child to adult healthcare services for young people with type 1 diabetes: a systematic review. Diabet Med. 2015;32(4):440–58.

    Article  CAS  PubMed  Google Scholar 

  • Sobota AE, Shah N, Mack JW. Development of quality indicators for transition from pediatric to adult care in sickle cell disease: A modified Delphi survey of adult providers. Pediatr Blood Cancer. 2017;64:6.

    Article  Google Scholar 

  • Sonneveld HM, Strating MM, van Staa AL, Nieboer AP. Gaps in transitional care: what are the perceptions of adolescents, parents and providers? Child Care Health Dev. 2013;39(1):69–80.

    Article  CAS  PubMed  Google Scholar 

  • Spencer G. Young people and health: towards a new conceptual framework for understanding empowerment. Health. 2014;18(1):3–22.

    Article  PubMed  Google Scholar 

  • Straub DM, Tanner AE. Health-care transition from adolescent to adult services for young people with HIV. The Lancet Child & adolescent health. 2018;2(3):214–22.

    Article  Google Scholar 

  • Suris JC, Akre C. Key elements for, and indicators of, a successful transition: an international Delphi study. J Adolesc Health. 2015;56(6):612–8.

    Article  PubMed  Google Scholar 

  • Úcar Martínez X, Jiménez-Morales M, Soler Masó P, Trilla BJ. Exploring the conceptualization and research of empowerment in the field of youth. Int J Adolesc Youth. 2017;22(4):405–18.

    Article  Google Scholar 

  • van Staa A, Sattoe JN, Strating MM. Experiences with and outcomes of two interventions to maximize engagement of chronically ill adolescents during hospital consultations: a mixed methods study. J Pediatr Nurs. 2015;30(5):757–75.

    Article  PubMed  Google Scholar 

  • Walsh C, Jones B, Schonwald A. Health care transition planning among adolescents with autism Spectrum disorder. J Autism Dev Disord. 2017;47(4):980–91.

    Article  PubMed  Google Scholar 

  • Weigensberg MJ, Vigen C, Sequeira P, Spruijt-Metz D, Juarez M, Florindez D, et al. Diabetes empowerment council: integrative pilot intervention for transitioning young adults with type 1 diabetes. Global advances in health and medicine. 2018;7:2164956118761808.

    Article  PubMed  PubMed Central  Google Scholar 

  • While A, Heery E, Sheehan A, Coyne I. Health-related quality of life of young people with long-term illnesses before and after transfer from child to adult healthcare. Child Care Health Dev. 2017;43(1):144–51.

    Article  CAS  PubMed  Google Scholar 

  • World Health Organization. Making health services adolescent friendly: developing national quality standards for adolescent friendly health services. Geneva: World Health Organization; 2012.

    Google Scholar 

  • World Health Organization. Standards for improving the quality of care for children and young adolescents in health facilities. Geneva: World Health Organization; 2018.

    Google Scholar 

  • Zoni S, Verga ME, Hauschild M, Aquarone-Vaucher MP, Gyuriga T, Ramelet AS, et al. Patient perspectives on nurse-led consultations within a pilot structured transition program for young adults moving from an academic tertiary setting to community-based type 1 diabetes care. J Pediatr Nurs. 2018;38:99–105.

    Article  PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. School of Nursing and Midwifery, Faculty of Health Sciences, Trinity College Dublin, Dublin, Ireland

    Imelda T. Coyne

  2. Keck School of Medicine, Department of Pediatrics, University of Southern California, Los Angeles, CA, USA

    Cecily L. Betz

Authors
  1. Imelda T. Coyne
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Cecily L. Betz
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Imelda T. Coyne .

Editor information

Editors and Affiliations

  1. Keck School of Medicine, Department of Pediatrics, University of Southern California, Los Angeles, CA, USA

    Cecily L. Betz

  2. School of Nursing and Midwifery, Faculty of Health Sciences, Trinity College, Dublin, Ireland

    Imelda T. Coyne

Rights and permissions

Reprints and permissions

Copyright information

© 2020 Springer Nature Switzerland AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Coyne, I.T., Betz, C.L. (2020). Nursing Initiatives and Future Directions for Transition Practice and Research. In: Betz, C., Coyne, I. (eds) Transition from Pediatric to Adult Healthcare Services for Adolescents and Young Adults with Long-term Conditions. Springer, Cham. https://doi.org/10.1007/978-3-030-23384-6_13

Download citation

  • DOI: https://doi.org/10.1007/978-3-030-23384-6_13

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-030-23386-0

  • Online ISBN: 978-3-030-23384-6

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics

Search

Navigation