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GROWING UP AND MOVING ON - INSIGHTS FROM THE HEALTH CARE PROFESSIONALS AND ADOLESCENTS’ PERSPECTIVES ON THE ISSUES AND BARRIERS IN THE TRANSFER OF CARE FROM PAEDIATRICS TO ADULT CARE

Published online by Cambridge University Press:  27 July 2021

Grace Gilmore ,
Louise Kiernan ,
Eoin White  and
Bernard Hartigan
Grace Gilmore*
Affiliation:
University of Limerick
Louise Kiernan
Affiliation:
University of Limerick
Eoin White
Affiliation:
University of Limerick
Bernard Hartigan
Affiliation:
University of Limerick
*
Gilmore, Grace Hilary, University of Limerick, School of Design, Ireland, grace.gilmore@ul.ie

Abstract

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The aim of this research is to report the finding from the perspective of the Healthcare Professionals and the adolescents and young adults (AYA's) to identify issues and barriers to a successful transition for adolescents with Juvenile Idiopathic Arthritis (JIA) as they move from Paediatric Healthcare setting to Adult Healthcare.

Healthcare services that fail to adequately meet the needs of young people and their families at this time of considerable change may result in a decline in their health status that can have a negative long-term impact. Through a user-centered research design (UCD) and Universal Design, the needs of all participants and stakeholders will be assessed. This paper applies the most appropriate proposed methods for the development of a solution to mitigate against some of the issues in tangent with the needs and feedback identified during the research process.

Keywords

Juvenile Idiopathic Arthritis(JIA)Transition of careEarly design phasesUser centred designDesign practice
Type
Article
Information
Proceedings of the Design Society , Volume 1: ICED21 , August 2021 , pp. 1677 - 1686
Creative Commons
Creative Common License - CCCreative Common License - BYCreative Common License - NCCreative Common License - ND
This is an Open Access article, distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives licence (http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is unaltered and is properly cited. The written permission of Cambridge University Press must be obtained for commercial re-use or in order to create a derivative work.
Copyright
The Author(s), 2021. Published by Cambridge University Press

References

Bassuk, E. L., Latta, R. E., Sember, R., Raja, S. & Richard, M. 2017. Universal Design for Underserved Populations: person-centered, recovery-oriented and trauma informed. Journal of Health Care for the Poor and Underserved, 28, 896–914. https://doi.org/10.1353/hpu.2017.0087CrossRefGoogle ScholarPubMed
Burström, Å., Bratt, E.-L., Frenckner, B., Nisell, M., Hanséus, K., Rydberg, A. & Öjmyr-Joelsson, M. 2017. Adolescents with congenital heart disease: their opinions about the preparation for transfer to adult care. European Journal of Pediatrics, 176, 881–889. https://doi.org/10.1007/s00431-017-2917-9CrossRefGoogle ScholarPubMed
Care, A. G. S. E. P. O. P. C., Brummel-Smith, K., Butler, D., Frieder, M., Gibbs, N., Henry, M., Koons, E., Loggers, E., Porock, D. & Reuben, D. B. 2016. Person-centered care: A definition and essential elements. Journal of the American Geriatrics Society, 64, 15–18. https://doi.org/10.1111/jgs.13866Google Scholar
Cash, P. J., Hartlev, C. G. & Durazo, C. B. 2017. Behavioural design: A process for integrating behaviour change and design. Design Studies, 48, 96–128. https://doi.org/10.1016/j.destud.2016.10.001CrossRefGoogle Scholar
Charmaz, K. & Thornberg, R. 2020. The pursuit of quality in grounded theory. Qualitative Research in Psychology, 1–23. https://doi.org/10.1080/14780887.2020.1780357CrossRefGoogle Scholar
Clarke, J. L., Bourn, S., Skoufalos, A., Beck, E. H. & Castillo, D. J. 2017. An innovative approach to health care delivery for patients with chronic conditions. Population health management, 20, 23–30. https://doi.org/10.1089/pop.2016.0076CrossRefGoogle ScholarPubMed
Clemente, D., Leon, L., Foster, H., Carmona, L. & Minden, K. 2017. Transitional care for rheumatic conditions in Europe: current clinical practice and available resources. Pediatr Rheumatol Online J, 15, 49. https://doi.org/10.1186/s12969-017-0179-8CrossRefGoogle ScholarPubMed
Conti, F., Pontikaki, I., D'andrea, M., Ravelli, A. & De Benedetti, F. 2018. Patients with juvenile idiopathic arthritis become adults: the role of transitional care. Clinical and experimental rheumatology, 36, 1086–1094. https://doi.org/10.1093/rheumatology/kew183.001Google ScholarPubMed
Coyne, I., Sheehan, A., Heery, E. & While, A. E. 2019. Healthcare transition for adolescents and young adults with long-term conditions: Qualitative study of patients, parents and healthcare professionals’ experiences. Journal of Clinical Nursing, 28, 4062–4076. https://doi.org/10.1111/Jocn.15006CrossRefGoogle Scholar
Dwyer-Matzky, K., Blatt, A., Asselin, B. L. & Wood, D. L. 2018. Lack of preparedness for pediatric to adult-oriented health care transition in hospitalized adolescents and young adults. Academic Pediatrics, 18, 102–110. https://doi.org/10.1016/j.acap.2017.07.008CrossRefGoogle ScholarPubMed
Ekman, I., Swedberg, K., Taft, C., Lindseth, A., Norberg, A., Brink, E., Carlsson, J., Dahlin-Ivanoff, S., Johansson, I.-L. & Kjellgren, K. 2011. Person-centered care—ready for prime time. European journal of cardiovascular nursing, 10, 248–251. https://doi.org/10.1016/j.ejcnurse.2011.06.008CrossRefGoogle ScholarPubMed
Fucile, B., Bridge, E. & Duliban, C. 2017. Experience-based co-design: a method for patient and family engagement in system-level quality improvement. Patient Experience Journal, 4, 53–60. https://doi.org/10.35680/2372-0247.1209CrossRefGoogle Scholar
Groeneveld, B., Dekkers, T., Boon, B. & D'olivo, P. 2018. Challenges for design researchers in healthcare. Design for Health, 2, 305–326. https://doi.org/10.1080/24735132.2018.1541699CrossRefGoogle Scholar
Gustavsson, S. M. & Andersson, T. 2019. Patient involvement 2.0: experience-based co-design supported by action research. Action research, 17, 469–491. https://doi.org/10.1177/1476750317723965CrossRefGoogle Scholar
Huber, M., Knottnerus, J. A., Green, L., Van Der Horst, H., Jadad, A. R., Kromhout, D., Leonard, B., Lorig, K., Loureiro, M. I. & Van Der Meer, J. W. 2011. How should we define health? Bmj, 343. https://doi.org/10.1136/bmj.d4163CrossRefGoogle ScholarPubMed
Hurley, J., Lamker, C. W., Taylor, E. J., Stead, D., Hellmich, M., Lange, L., Rowe, H., Beeck, S., Phibbs, P. & Forsyth, A. 2016. Exchange between researchers and practitioners in urban planning: achievable objective or a bridge too far?/The use of academic research in planning practice: who, what, where, when and how?/Bridging research and practice through collaboration: lessons from a joint working group/Getting the relationship between researchers and practitioners working/Art and urban planning: stimulating researcher, practitioner and community engagement/Collaboration between researchers and practitioners: Political and bureaucratic issues/Investigating Research/Conclusion: Breaking down barriers through international practice? Planning theory & practice, 17, 447–473. https://doi.org/10.1080/14649357.2016.1190491CrossRefGoogle Scholar
Katsulis, Z., Ergai, A., Leung, W. Y., Schenkel, L., Rai, A., Adelman, J., Benneyan, J., Bates, D. W. & Dykes, P. C. 2016. Iterative user centered design for development of a patient-centered fall prevention toolkit. Applied ergonomics, 56, 117–126. https://doi.org/10.1016/j.apergo.2016.03.011CrossRefGoogle ScholarPubMed
Lindemann, U. 2003. Human behaviour in design, Springer. https://doi.org/10.1007/978-3-662-07811-2CrossRefGoogle Scholar
Lopez-Rangel, E., Mickelson, E. C. & Suzanne Lewis, M. 2008. The value of a genetic diagnosis for individuals with intellectual disabilities: optimising healthcare and function across the lifespan. The British Journal of Development Disabilities, 54, 69–82. https://doi.org/10.1179/096979508799103215CrossRefGoogle Scholar
Meyer, A., Rose, D. H. & Gordon, D. T. 2014. Universal design for learning: Theory and practice, CAST Professional Publishing. https://doi.org/10.17763/haer.83.1.33102p26478p54pwGoogle Scholar
Reay, S., Collier, G., Kennedy-Good, J., Old, A., Douglas, R. & Bill, A. 2017. Designing the future of healthcare together: prototyping a hospital co-design space. CoDesign, 13, 227–244. https://doi.org/10.1080/15710882.2016.1160127CrossRefGoogle Scholar
Sawyer, S., Mcneil, R., Thompson, K., Orme, L. & Mccarthy, M. 2019. Developmentally appropriate care for adolescents and young adults with cancer: how well is Australia doing? Supportive Care in Cancer, 27, 1783–1792. https://doi.org/10.1007/s00520-018-4420-xCrossRefGoogle Scholar
Stroud, C., Walker, L. R., Davis, M. & Irwin, C. E. Jr 2015. Investing in the health and well-being of young adults. Journal of Adolescent Health, 56, 127–129. https://doi.org/10.1016/j.jadohealth.2014.11.012CrossRefGoogle ScholarPubMed
Suris, J.-C. & Akre, C. 2015. Key elements for, and indicators of, a successful transition: an international Delphi study. Journal of Adolescent Health, 56, 612–618. https://doi.org/10.1016/j.jadohealth.2015.02.007CrossRefGoogle Scholar
Vaks, Y., Bensen, R., Steidtmann, D., Wang, T. D., Platchek, T. S., Zulman, D. M., Malcolm, E. & Milstein, A. Better health, less spending: Redesigning the transition from pediatric to adult healthcare for youth with chronic illness. Healthcare, 2016. Elsevier, 57–68. https://doi.org/10.1016/j.hjdsi.2015.09.001CrossRefGoogle Scholar