41 Scoping review pediatric patient engagement 21. Hart, R. I., Cameron, D. A., Cowie, F. J., Harden, J., Heaney, N. B., Rankin, D., et al. (2020). The challenges of making informed decisions about treatment and trial participation following a cancer diagnosis: a qualitative study involving adolescents and young adults with cancer and their caregivers. BMC health services research, 20(1), 1-13. 22. Koller, D., & Espin, S. (2018). Views of children, parents, and health-care providers on pediatric disclosure of medical errors. Journal of Child Health Care, 22(4), 577-590. 23. Smeland, A. H., Rustøen, T., Næss, T., Nybro, L., Lundeberg, S., Reinertsen, H., et al. (2019). Children’s views on postsurgical pain in recovery units in Norway: A qualitative study. Journal of clinical nursing, 28(11-12), 2157-2170. 24. Weaver, M. S., Baker, J. N., Gattuso, J. S., Gibson, D. V., Sykes, A. D., & Hinds, P. S. (2015). Adolescents’ preferences for treatment decisional involvement during their cancer. Cancer, 121(24), 4416-4424. 25. Parsons, S., Thomson, W., Cresswell, K., Starling, B., & McDonagh, J. E. (2018). What do young people with rheumatic conditions in the UK think about research involvement? A qualitative study. Pediatric Rheumatology, 16(1), 1-9. 26. Christofides, E., Dobson, J. A., Solomon, M., Waters, V., & O’Doherty, K. C. (2016). Heuristic decisionmaking about research participation in children with cystic fibrosis. Social science & medicine, 162, 32-40. 27. Unguru, Y., Sill, A. M., & Kamani, N. (2010). The experiences of children enrolled in pediatric oncology research: implications for assent. Pediatrics, 125(4), e876-e883. 28. Hein, I. M., Troost, P. W., de Vries, M. C., Knibbe, C. A., van Goudoever, J. B., & Lindauer, R. J. (2015). Why do children decide not to participate in clinical research: a quantitative and qualitative study. Pediatric research, 78(1), 103-108. 29. Van Staa, A., Jedeloo, S., Latour, J. M., & Trappenburg, M. J. (2010). Exciting but exhausting: experiences with participatory research with chronically ill adolescents. Health Expectations, 13(1), 95-107. 30. Grant, A., Crane, M., Laupacis, A., Griffiths, A., Burnett, D., Hood, A., et al. (2019). Engaging patients and caregivers in research for pediatric inflammatory bowel disease: top 10 research priorities. Journal of pediatric gastroenterology and nutrition, 69(3), 317-323. 31. Lopez-Vargas, P., Tong, A., Crowe, S., Alexander, S. I., Caldwell, P. H. Y., Campbell, D. E., et al. (2019). Research priorities for childhood chronic conditions: a workshop report. Archives of disease in childhood, 104(3), 237-245. 32. Fahner, J., Rietjens, J., van der Heide, A., Milota, M., van Delden, J., & Kars, M. (2021). Evaluation showed that stakeholders valued the support provided by the Implementing Pediatric Advance Care Planning Toolkit. Acta Paediatrica, 110(1), 237-246. 33. Bray, L., Sharpe, A., Gichuru, P., Fortune, P.-M., Blake, L., & Appleton, V. (2020). The acceptability and impact of the Xploro digital therapeutic platform to inform and prepare children for planned procedures in a hospital: before and after evaluation study. Journal of medical Internet research, 22(8), e17367. 34. Belsky, J. A., Holmes, C., Stanek, J., Yeager, N. D., & Audino, A. N. (2021). Evaluating Perspectives of a Smartphone Medication Application in the Adolescent and Young Adult Oncology Population: A Qualitative Study. Journal of Adolescent and Young Adult Oncology, 10(3), 282-287. 35. Sleath, B., Carpenter, D. M., Lee, C., Loughlin, C. E., Etheridge, D., Rivera-Duchesne, L., et al. (2016). The development of an educational video to motivate teens with asthma to be more involved during medical visits and to improve medication adherence. Journal of Asthma, 53(7), 714-719. 36. Evers, J. C. r. (2007). Kwalitatief interviewen: kunst én kunde. Den Haag: Uitgeverij Lemma. 37. Pelander, T., & Leino-Kilpi, H. (2004). Quality in pediatric nursing care: children’s expectations. Issues in comprehensive pediatric nursing, 27(3), 139-151. 38. Jeschke, S., Woltermann, S., Neininger, M. P., Pauschek, J., Kiess, W., Bertsche, T., et al. (2021). Interviews with patients aged 6–17 years provide valuable insights for physicians who need to deliver an epilepsy diagnosis. Acta Paediatrica, 110(5), 1556-1561. 39. Jiang, I., Major, G., Singh-Grewal, D., Teng, C., Kelly, A., Niddrie, F., et al. (2021). Patient and parent perspectives on transition from paediatric to adult healthcare in rheumatic diseases: an interview study. BMJ open, 11(1), e039670. 40. Gagnon, I., Swaine, B., Champagne, F., & Lefebvre, H. (2008). Perspectives of adolescents and their parents regarding service needs following a mild traumatic brain injury. Brain Injury, 22(2), 161-173. 2
RkJQdWJsaXNoZXIy MTk4NDMw