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Nursing Initiatives and Future Directions for Transition Practice and Research

  • Imelda T. CoyneEmail author
  • Cecily L. Betz
Chapter

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.

Keywords

Healthcare transition Adolescents Long-term conditions Nurses’ roles Nursing interventions Evaluation 

References

  1. 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.PubMedPubMedCentralCrossRefGoogle Scholar
  2. 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.PubMedCrossRefGoogle Scholar
  3. 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.CrossRefGoogle Scholar
  4. Ardoin SP. Transitions in rheumatic disease: pediatric to adult care. Pediatr Clin N Am. 2018;65(4):867–83.CrossRefGoogle Scholar
  5. 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
  6. 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.PubMedPubMedCentralCrossRefGoogle Scholar
  7. 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.PubMedPubMedCentralCrossRefGoogle Scholar
  8. 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.PubMedCrossRefGoogle Scholar
  9. 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.PubMedPubMedCentralCrossRefGoogle Scholar
  10. Betz CL. A systems approach to adolescent transitions: an opportunity for nurses. J Pediatr Nurs. 1996;11(5):271–2.PubMedCrossRefGoogle Scholar
  11. 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.CrossRefPubMedGoogle Scholar
  12. Betz CL. The forgotten population of adolescents. J Pediatr Nurs. 1998b;13(4):199.PubMedCrossRefGoogle Scholar
  13. Betz CL. SPN position statement: transition of pediatric patients into adult care. J Pediatr Nurs. 2017;35:160–4.PubMedPubMedCentralCrossRefGoogle Scholar
  14. Betz CL, Redcay G. Dimensions of the transition service coordinator role. J Spec Pediatr Nurs. 2005;10(2):49–59.CrossRefPubMedGoogle Scholar
  15. 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.PubMedCrossRefGoogle Scholar
  16. Betz CL, O'Kane LS, Nehring WM, Lobo ML. Systematic review: health care transition practice service models. Nurs Outlook. 2016;64(3):229–43.PubMedCrossRefGoogle Scholar
  17. 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.CrossRefPubMedGoogle Scholar
  18. 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.PubMedPubMedCentralCrossRefGoogle Scholar
  19. 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.PubMedCrossRefGoogle Scholar
  20. Callinan J, Coyne I. Arts-based interventions to promote transition outcomes for young people with long-term conditions: a review. Chronic Illn. 2018;1742395318782370Google Scholar
  21. 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.PubMedGoogle Scholar
  22. Care Quality Commission. From the pond into the sea: children's transition to adult health services. London CQC; 2014.Google Scholar
  23. 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.CrossRefPubMedGoogle Scholar
  24. 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.PubMedPubMedCentralCrossRefGoogle Scholar
  25. 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.PubMedCrossRefGoogle Scholar
  26. 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.CrossRefGoogle Scholar
  27. 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.CrossRefGoogle Scholar
  28. 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.PubMedCrossRefGoogle Scholar
  29. Coyne I, Kirwan L. Ascertaining children’s wishes and feelings about hospital life. J Child Health Care. 2012;16(3):289–303.CrossRefGoogle Scholar
  30. 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.CrossRefGoogle Scholar
  31. 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.PubMedCrossRefGoogle Scholar
  32. 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.CrossRefPubMedGoogle Scholar
  33. 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.PubMedCrossRefGoogle Scholar
  34. 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.PubMedCrossRefGoogle Scholar
  35. 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.PubMedPubMedCentralCrossRefGoogle Scholar
  36. 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.PubMedCrossRefGoogle Scholar
  37. 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.CrossRefPubMedGoogle Scholar
  38. 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.CrossRefGoogle Scholar
  39. Hargreaves DS. Learning to listen: delivering patient-centered care for adolescents. J Adolesc Health. 2014;55(4):463–4.PubMedCrossRefGoogle Scholar
  40. 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.PubMedCrossRefGoogle Scholar
  41. 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.CrossRefGoogle Scholar
  42. House SA, Coon ER, Schroeder AR, Ralston SL. Categorization of national pediatric quality measures. Pediatrics. 2017;139:4.CrossRefGoogle Scholar
  43. 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.PubMedCrossRefGoogle Scholar
  44. 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.PubMedPubMedCentralCrossRefGoogle Scholar
  45. 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.PubMedPubMedCentralCrossRefGoogle Scholar
  46. 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.PubMedPubMedCentralCrossRefGoogle Scholar
  47. 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.PubMedCrossRefGoogle Scholar
  48. 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.PubMedCrossRefGoogle Scholar
  49. 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.PubMedCrossRefGoogle Scholar
  50. 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.PubMedCrossRefGoogle Scholar
  51. 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.PubMedPubMedCentralCrossRefGoogle Scholar
  52. 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.PubMedCrossRefGoogle Scholar
  53. 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.PubMedPubMedCentralCrossRefGoogle Scholar
  54. 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
  55. 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
  56. Nicolarsen J. Transition of adolescents and young adults with congenital heart disease: challenges, Progress, and future improvements. Pediatr Ann. 2017;46(6):e224–e8.PubMedCrossRefGoogle Scholar
  57. 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
  58. 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.CrossRefGoogle Scholar
  59. 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.PubMedCrossRefGoogle Scholar
  60. 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.PubMedCrossRefGoogle Scholar
  61. 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.CrossRefPubMedGoogle Scholar
  62. 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.PubMedCrossRefGoogle Scholar
  63. 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.PubMedCrossRefGoogle Scholar
  64. 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.PubMedGoogle Scholar
  65. 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.CrossRefPubMedGoogle Scholar
  66. 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.CrossRefGoogle Scholar
  67. 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.PubMedCrossRefGoogle Scholar
  68. Spencer G. Young people and health: towards a new conceptual framework for understanding empowerment. Health. 2014;18(1):3–22.PubMedPubMedCentralCrossRefGoogle Scholar
  69. 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.CrossRefGoogle Scholar
  70. 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.CrossRefPubMedGoogle Scholar
  71. 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.CrossRefGoogle Scholar
  72. 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.PubMedCrossRefGoogle Scholar
  73. 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.PubMedCrossRefGoogle Scholar
  74. 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.PubMedPubMedCentralCrossRefGoogle Scholar
  75. 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.CrossRefPubMedGoogle Scholar
  76. World Health Organization. Making health services adolescent friendly: developing national quality standards for adolescent friendly health services. Geneva: World Health Organization; 2012.Google Scholar
  77. 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
  78. 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.PubMedPubMedCentralCrossRefGoogle Scholar

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© Springer Nature Switzerland AG 2020

Authors and Affiliations

  1. 1.School of Nursing and Midwifery, Faculty of Health Sciences, Trinity College DublinDublinIreland
  2. 2.Keck School of Medicine, Department of PediatricsUniversity of Southern CaliforniaLos AngelesUSA

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