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Empirical Studies

Transition from Paediatric to adult health services: Aspirations and practices of human flourishing

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Article: 2278904 | Received 13 Feb 2023, Accepted 31 Oct 2023, Published online: 23 Nov 2023

References

  • Acuña Mora, M., Sparud-Lundin, C., Bratt, E.-L., & Moons, P. (2020). Empowering young people during the transition to adulthood. In C. L. Betz & I. T. Coyne (Eds.), Transition from pediatric to adult healthcare services for adolescents and young adults with long-term conditions: An international perspective on nurses’ roles and interventions (pp. 19–17). Springer International Publishing. https://doi.org/10.1007/978-3-030-23384-6_2
  • Aiguier, G., & Cobbaut, J. (2016). Chapitre 1. Le tournant pragmatique de l’éthique en santé: Enjeux et perspectives pour la formation. Journal international de bioéthique et Ddéthique des sciences, 27, 17–40. https://doi.org/10.3917/jib.271.0017
  • Aiguier, G., & Loute, A. (2016). L’intervention éthique en santé: Un apprentissage collectif. Nouvelles pratiques sociales, 28(2), 158–172. https://doi.org/10.7202/1041185ar
  • Anderson, J. K., Newlove-Delgado, T., & Ford, T. J. (2022). Annual research review: A systematic review of mental health services for emerging adults - moulding a precipice into a smooth passage. Journal of Child Psychology and Psychiatry, 63(4), 447–462. https://doi.org/10.1111/jcpp.13561
  • Annunziato, R. A., Baisley, M. C., Arrato, N. A., Barton, C., Henderling, F., Arnon, R., & Kerkar, N. (2013). Strangers headed to a strange land? A pilot study of using a transition coordinator to improve transfer from pediatric to adult services. The Journal of Pediatrics, 163(6), 1628–1633. https://doi.org/10.1016/j.jpeds.2013.07.031
  • Betz, C. L., Lobo, M. L., Nehring, W. M., & Bui, K. (2016). Systematic review: Health care transition practice service models. Nursing Outlook, 64(3), 229–243. https://doi.org/10.1016/j.outlook.2015.12.011
  • Blum, R. W., Garell, D., Hodgman, C. H., Jorissen, T. W., Okinow, N. A., Orr, D. P., & Slap, G. B. (1993). Transition from child-centered to adult health-care systems for adolescents with chronic conditions: A position paper of the society for adolescent medicine. Journal of Adolescent Health, 14(7), 570–576. https://doi.org/10.1016/1054-139x(93)90143-d
  • Bogossian, A., Majnemer, A., & Racine, E. (2020). Contextualized autonomy in transitional care for youth with neurologic conditions: The role of the pediatric neurologist. Journal of Child Neurology, 35(8), 536–542. https://doi.org/10.1177/0883073820918454
  • Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 101–177. https://doi.org/10.1191/1478088706qp063oa
  • CanChild, K. I. T. Keeping it Together™ for youth. Retrieved January 11, 2023 from https://www.canchild.ca/system/tenon/assets/attachments/000/000/721/original/Youth_Kit_Online.pdf.
  • Carnevale, F. A., Teachman, G., & Bogossian, A. (2017). A relational ethics framework for advancing practice with children with complex health care needs and their parents. Comprehensive Child and Adolescent Nursing, 40(4), 268–284. https://doi.org/10.1080/24694193.2017.1373162
  • Clark, D. A., Biggeri, M., & Frediani, A. A. (2019). Participation, empowerment and capacilities: Key lessons and future challenges. In D. A. Clark, M. Biggeri, & A. A. Frediani (Eds.), The capability approach, empowerment and participation: Concepts, methods and applications (pp. pp. 385–402). Palgrave Macmillan.
  • Clemente, D., Leon, L., Foster, H., Carmona, L., & Minden, K. (2017). Transitional care for rheumatic conditions in Europe: Current clinical practice and available resources. Pediatric Rheumatology, 15(1), 49. https://doi.org/10.1186/s12969-017-0179-8
  • Crowley, R., Wolfe, I., Lock, K., & Mckee, M. (2011). Improving the transition between paediatric and adult healthcare: A systematic review. Archives of Disease in Childhood, 96(6), 548–553. https://doi.org/10.1136/adc.2010.202473
  • Freeman, M., Stewart, D. A., Shimmell, L., Missiuna, C., Burke-Gaffney, J., Jaffer, S., & Law, M. (2015). Development and evaluation of the KIT: Keeping it Together™ for youth (the ‘youth KIT’) to assist youth with disabilities in managing information. Child: Care, Health and Development, 41(2), 222–229. https://doi.org/10.1111/cch.12199
  • Frega, R., & Carreira da Silva, F. (2011). Pragmatism and the social Sciences: A century of influences and interactions vol. 1. European Journal of Pragmatism and American Philosophy, 3(2), 1–6. https://doi.org/10.4000/ejpap.812
  • Friedman, E. M., & Ryff, C. D. (2012). Living well with medical comorbidities: A biopsychosocial perspective. The Journals of Gerontology: Series B, 67(5), 535–544. https://doi.org/10.1093/geronb/gbr152
  • Gibson, B. E., Mistry, B., Smith, B., Yoshida, K. K., Abbott, D., Lindsay, S., & Hamdani, Y. (2014). Becoming men: Gender, disability, and transitioning to adulthood. Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, 18(1), 95–114. https://doi.org/10.1177/1363459313476967
  • Gorter, J. W., Stewart, D., Cohen, E., Hlyva, O., Morrison, A., Galuppi, B., Nguyen, T., Amaria, T., Punthakee, Z., Arora, S., Brill, H., Cairney, J., Don-Wauchope, A., Grant, C., Nagel, K., Rosenbaum, P., Kim, H.-J., Lacombe-Duncan, A., Weiser, N., & TRACE Study Group. (2015). Are two youth-focused interventions sufficient to empower youth with chronic health conditions in their transition to adult healthcare: A mixed-methods longitudinal prospective cohort study. British Medical Journal Open, 5(5), e007553–e007553. https://doi.org/10.1136/bmjopen-2014-007553
  • Gray, W., Morgan, P., Holbrook, E., Rosen, M., Yacyshyn, B., Wise, C., Wagoner, S., Schaefer, M., Saeed, S. A., Denson, L., Mackner, L., & Hommel, K. (2017). P-223 the self-management transition enhancement program (STEP): Study design and preliminary findings. Inflammatory Bowel Diseases, 23(1), S74. https://doi.org/10.1097/01.MIB.0000512739.84622.1d
  • Gray, W. N., Schaefer, M. R., Resmini-Rawlinson, A., & Wagoner, S. T. (2018). Barriers to transition from pediatric to adult care: A systematic review. Journal of Pediatric Psychology, 43(5), 488–502. https://doi.org/10.1093/jpepsy/jsx142
  • Hamdani, Y., Mistry, B., & Gibson, B. E. (2015). Transitioning to adulthood with a progressive condition: Best practice assumptions and individual experiences of young men with Duchenne muscular dystrophy. Disability & Rehabilitation, 37(13), 1144–1151. https://doi.org/10.3109/09638288.2014.956187
  • Jagosh, J., Macaulay, A. C., Pluye, P., Salsberg, J., Bush, P. L., Henderson, J., Sirett, E., Wong, G., Cargo, M., Herbert, C. P., Seifer, S. D., Green, L. W., & Greenhalgh, T. (2012). Uncovering the benefits of participatory research: Implications of a realist review for health research and practice. The Milbank Quarterly, 90(2), 311–346. https://doi.org/10.1111/j.1468-0009.2012.00665.x
  • Kakkar, F., Van der Linden, D., Valois, S., Maurice, F., Onnorouille, M., Lapointe, N., Soudeyns, H., & Lamarre, V. (2016). Health outcomes and the transition experience of HIV-infected adolescents after transfer to adult care in Québec, Canada. BMC Pediatrics, 16(1), 1–7. https://doi.org/10.1186/s12887-016-0644-4
  • Kim, E. S., Chen, Y., Nakamura, J. S., Ryff, C. D., & VanderWeele, T. J. (2022). Sense of purpose in life and subsequent physical, behavioral, and psychosocial health: An outcome-wide approach. American Journal of Health Promotion, 36(1), 137–147. https://doi.org/10.1177/08901171211038545
  • Klassen, A. F., Grant, C., Barr, R., Brill, H., Kraus de Camargo, O., Ronen, G. M., Samaan, M. C., Mondal, T., Cano, S. J., Schlatman, A., Tsangaris, E., Athale, U., Wickert, N., & Gorter, J. W. (2015). Development and validation of a generic scale for use in transition programmes to measure self-management skills in adolescents with chronic health conditions: The TRANSITION-Q. Child: Care, Health and Development, 41(4), 547–558. https://doi.org/10.1111/cch.12207
  • Lanteigne, A., Genest, M., & Racine, E. (2021). The evaluation of pediatric-adult transition programs: What place for human flourishing? SSM - Mental Health, 1, 100007. https://doi.org/10.1016/j.ssmmh.2021.100007
  • Larivière-Bastien, D., Bell, E., Majnemer, A., Shevell, M., & Racine, E. (2013). Perspectives of young adults with cerebral palsy on transitioning from pediatric to adult healthcare systems. Seminars in Pediatric Neurology, 20(2), 154–159. https://doi.org/10.1016/j.spen.2013.06.009
  • Lee, B., Park, H. J., Kwon, M. J., & Lee, J. H. (2019). A sound mind in a sound body?: The association of adolescents’ chronic illness with intrinsic life goals and the mediating role of self-esteem and peer relationship. Vulnerable Children and Youth Studies, 14(4), 338–350. https://doi.org/10.1080/17450128.2019.1626520
  • Miller, A. L., Gearhardt, A. N., Fredericks, E. M., Katz, B., Shapiro, L. F., Holden, K., Kaciroti, N., Gonzalez, R., Hunter, C., & Lumeng, J. C. (2018). Targeting self-regulation to promote health behaviors in children. Behaviour Research and Therapy, 101, 71–81. https://doi.org/10.1016/j.brat.2017.09.008
  • Minskoff, E. H., & Demoss, S. (1993). Facilitating successful transition: Using the TRAC model to assess and develop academic skills needed for vocational competence. Learning Disability Quarterly, 16(3), 161–170. https://doi.org/10.2307/1511324
  • Montpetit, M. A., & Tiberio, S. S. (2016). Probing resilience: Daily environmental mastery, self-esteem, and stress appraisal. International Journal of Aging & Human Development, 83(4), 311–332. https://doi.org/10.1177/0091415016655162
  • Montreal Children’s Hospital. Self report transition readiness assessment – youth. Retrieved January 11, 2023 from https://www.thechildren.com/sites/default/files/PDFs/self_report_transition_readiness_assessment_en.pdf.
  • Nakhla, M., Bell, L. E., Wafa, S., & Dasgupta, K. (2017). Improving the transition from pediatric to adult diabetes care: The pediatric care provider’s perspective in Quebec, Canada. BMJ Open Diabetes Research and Care, 5(1), e000390. https://doi.org/10.1136/bmjdrc-2017-000390
  • Neupert, S. D., Almeida, D. M., & Charles, S. T. (2007). Age differences in reactivity to daily stressors: The role of personal control. The Journals of Gerontology: Series B, 62(4), P216–P225. https://doi.org/10.1093/geronb/62.4.P216
  • Okumura, M. J., Kuo, D. Z., Ware, A. N., Cyr, M. H., & White, P. H. (2022). Improving health care transitions for children and youth with special health care needs. Academic Pediatrics, 22(2), S7–S13. https://doi.org/10.1016/j.acap.2021.03.014
  • Olsson, C. A., Boyce, M. F., Toumbourou, J. W., & Sawyer, S. M. (2005). The role of peer support in facilitating psychosocial adjustment to chronic illness in adolescence. Clinical Child Psychology and Psychiatry, 10(1), 78–87. https://doi.org/10.1177/1359104505048793
  • Oskoui, M. (2012). Growing up with cerebral palsy: Contemporary challenges of healthcare transition. Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques, 39(1), 23–25. https://doi.org/10.1017/S0317167100012634
  • Paone, M. C., Wigle, M., & Saewyc, E. (2006). The on TRAC model for transitional care of adolescents. Progress in Transplantation, 16(4), 291–302. https://doi.org/10.1177/152692480601600403
  • Racine, E., Bell, E., Yan, A., Andrew, G., Bell, L. E., Clarke, M., Dubljevic, V., Goldowitz, D., Janvier, A., McLachlan, K., Muhajarine, N., Nicholas, D., Oskoui, M., Rasmussen, C., Rasmussen, L. A., Roberts, W., Shevell, M., Wade, L., & Yager, J. Y. (2014). Ethics challenges of transition from paediatric to adult health care services for young adults with neurodevelopmental disabilities. Paediatrics and Child Health, 19(2), 65–68. https://doi.org/10.1093/pch/19.2.65
  • Ryff, C. D., & Singer, B. (1998). The contours of positive human health. Psychological Inquiry, 9(1), 1–28. https://doi.org/10.1207/s15327965pli0901_1
  • Ryff, C. D., & Singer, B. H. (2008). Know thyself and become what you are: A eudaimonic approach to psychological well-being. Journal of Happiness Studies, 9(1), 13–39. https://doi.org/10.1007/s10902-006-9019-0
  • Schaefer, S. M., Boylan, J. M., van Reekum, C. M., Lapate, R. C., Norris, C. J., Ryff, C. D., Davidson, R. J., & Paterson, K. (2013). Purpose in life predicts better emotional recovery from negative stimuli. PloS One, 8(11), e80329. https://doi.org/10.1371/journal.pone.0080329
  • Stewart, K. T., Chahal, N., Kovacs, A. H., Manlhiot, C., Jelen, A., Collins, T., & McCrindle, B. W. (2017). Readiness for transition to adult health care for young adolescents with congenital heart disease. Pediatric Cardiology, 38(4), 778–786. https://doi.org/10.1007/s00246-017-1580-2
  • Swift, K. D., Hall, C. L., Marimuttu, V., Redstone, L., Sayal, K., & Hollis, C. (2013). Transition to Q22 adult mental health services for young people with attention deficit/hyperactivity disorder (ADHD): A qualitative analysis of their experiences. BMC Psychiatry, 13(1), 74. https://doi.org/10.1186/1471-244X-13-74
  • Toulany, A., Willem Gorter, J., & Harrison, M. (2022). A call for action: Recommendations to improve transition to adult care for youth with complex health care needs. Paediatrics and Child Health, 27(5), 297–302. https://doi.org/10.1093/pch/pxac047
  • Urry, H. L., Nitschke, J. B., Dolski, I., Jackson, D. C., Dalton, K. M., Mueller, C. J., Rosenkranz, M. A., Ryff, C. D., Singer, B. H., & Davidson, R. J. (2004). Making a life worth living: Neural correlates of well-being. Psychological Science, 15(6), 367–372. ( PMID: 15147488). https://doi.org/10.1111/j.0956-7976.2004.00686.x
  • VanderWeele, T. J. (2017). On the promotion of human flourishing. Proceedings of the National Academy of Sciences, 114(31), 8148–8156. https://doi.org/10.1073/pnas.1702996114
  • While, A. E., Heery, E., Sheehan, A. M., & Coyne, I. (2017). Health-related quality of life of young people with long-term illnesses before and after transfer from child to adult healthcare. Child: Care, Health and Development, 43(1), 144–151. https://doi.org/10.1111/cch.12410
  • Willen, S. S. (2022). Flourishing and health in critical perspective: An invitation to interdisciplinary dialogue. SSM-Mental Health, 2, 100045. https://doi.org/10.1016/j.ssmmh.2021.100045
  • Witten, H., Savahl, S., Adams, S., & Gugliandolo, M. C. (2019). Adolescent flourishing: A systematic review. Cogent Psychology, 6(1). https://doi.org/10.1080/23311908.2019.1640341
  • Wood, D. L., Sawicki, G. S., Miller, M. D., Smotherman, C., Lukens-Bull, K., Livingood, W. C., Ferris, M., & Kraemer, D. F. (2014). The transition readiness assessment questionnaire (TRAQ): Its factor structure, reliability, and validity. Academic Pediatrics, 14(4), 415–422. https://doi.org/10.1016/j.acap.2014.03.008
  • Zimmermann, B. (2006). Pragmatism and the capability approach: Challenges in social theory and empirical research. European Journal of Social Theory, 9(4), 467–484. https://doi.org/10.1177/1368431006073014