Our reading list
The research behind our work on children's experience of care — psychological safety, play, consent, language, caregiver burden, and knowing when more treatment stops helping.
Have a suggestion? Drop us a note! hello@ronasfunlab.org
Foundations of patient- and family-centered care
Aiyegbusi, O. L., Roydhouse, J., Rivera, S. C., Kamudoni, P., Schache, P., Wilson, R., Stephens, R., & Calvert, M. (2022). Key considerations to reduce or address respondent burden in patient-reported outcome (PRO) data collection. Nature Communications, 13(1), 6026. doi.org/10.1038/s41467-022-33826-4
Barry, M. J., & Edgman-Levitan, S. (2012). Shared decision making — the pinnacle of patient-centered care. New England Journal of Medicine, 366(9), 780–781. doi.org/10.1056/nejmp1109283
Epstein, R. M., & Street, R. L. (2011). The values and value of patient-centered care. The Annals of Family Medicine, 9(2), 100–103. doi.org/10.1370/afm.1239
Hatzmann, J., Maurice-Stam, H., Heymans, H. S., & Grootenhuis, M. A. (2009). A predictive model of health related quality of life of parents of chronically ill children: The importance of care-dependency of their child and their support system. Health and Quality of Life Outcomes, 7(1), Article 72. doi.org/10.1186/1477-7525-7-72
Psychological safety, play, and music in children's care
Abdi, F., Karamoozian, A., Lotfilou, M., Gholami, F., Shaterian, N., Niasar, A. A., Aghapour, E., & Jandaghian-Bidgoli, M. (2025). Effect of play therapy and storytelling on the anxiety level of hospitalized children: A randomized controlled trial. BMC Complementary Medicine and Therapies, 25(1), 23. doi.org/10.1186/s12906-025-04767-4
Abela, K. M., Wardell, D., Rozmus, C., & LoBiondo-Wood, G. (2020). Impact of pediatric critical illness and injury on families: An updated systematic review. Journal of Pediatric Nursing, 51, 21–31. doi.org/10.1016/j.pedn.2019.10.013
Balluffi, A., Kassam-Adams, N., Kazak, A., Tucker, M., Dominguez, T., & Helfaer, M. (2004). Traumatic stress in parents of children admitted to the pediatric intensive care unit. Pediatric Critical Care Medicine, 5(6), 547–553. doi.org/10.1097/01.pcc.0000137354.19807.44
Bronner, M. B., Peek, N., Knoester, H., Bos, A. P., Last, B. F., & Grootenhuis, M. A. (2010). Course and predictors of posttraumatic stress disorder in parents after pediatric intensive care treatment of their child. Journal of Pediatric Psychology, 35(9), 966–974. doi.org/10.1093/jpepsy/jsq004
Calandriello, A., Tylka, J. C., & Patwari, P. P. (2018). Sleep and delirium in pediatric critical illness: What is the relationship? Medical Sciences, 6(4), 90. doi.org/10.3390/medsci6040090
Çıtak, E. A., Demir, K., & Kılıçarslan, E. (2026). The effect of music interventions on anxiety, fear, and pain in hospitalized children: A systematic review and meta-analysis. Journal of Pediatric Nursing, 86, 154–163. doi.org/10.1016/j.pedn.2025.11.001
Coyne, I., Amory, A., Kiernan, G., & Gibson, F. (2014). Children's participation in shared decision-making: Children, adolescents, parents and healthcare professionals' perspectives and experiences. European Journal of Oncology Nursing, 18(3), 273–280. doi.org/10.1016/j.ejon.2014.01.006
da Silva Santa, I. N., Schveitzer, M. C., dos Santos, M. L. B. M., Ghelman, R., & Filho, V. O. (2021). Music interventions in pediatric oncology: Systematic review and meta-analysis. Complementary Therapies in Medicine, 59, 102725. doi.org/10.1016/j.ctim.2021.102725
Fedhila, F., Hannachi, M. W., Jbebli, E., Selmi, I., Rhayem, S., Magouri, I., Bellali, H., & Khemiri, M. (2023). Impact of music therapy on quality of life in children with cancer. Children, 10(9), 1486. doi.org/10.3390/children10091486
Gjærde, L. K., Hybschmann, J., Dybdal, D., Topperzer, M. K., Schrøder, M. A., Gibson, J. L., Ramchandani, P., Ginsberg, E. I., Ottesen, B., Frandsen, T. L., & Sørensen, J. L. (2021). Play interventions for paediatric patients in hospital: A scoping review. BMJ Open, 11(7), e051957. doi.org/10.1136/bmjopen-2021-051957
Godino-Iáñez, M. J., Martos-Cabrera, M. B., Suleiman-Martos, N., Gómez-Urquiza, J. L., Vargas-Román, K., Membrive-Jiménez, M. J., & Albendín-García, L. (2020). Play therapy as an intervention in hospitalized children: A systematic review. Healthcare, 8(3), 239. doi.org/10.3390/healthcare8030239
Hartling, L., Newton, A. S., Liang, Y., Jou, H., Hewson, K., Klassen, T. P., & Curtis, S. (2013). Music to reduce pain and distress in the pediatric emergency department. JAMA Pediatrics, 167(9), 826–835. doi.org/10.1001/jamapediatrics.2013.200
He, H. G., Zhu, L., Chan, S. W. C., Klainin-Yobas, P., & Wang, W. (2015). The effectiveness of therapeutic play intervention in reducing perioperative anxiety, negative behaviors, and postoperative pain in children undergoing elective surgery: A systematic review. Pain Management Nursing, 16(3), 425–439. doi.org/10.1016/j.pmn.2014.08.011
Johnson, A. A., Berry, A., Bradley, M., Daniell, J. A., Lugo, C., Schaum-Comegys, K., Villamero, C., Williams, K., Yi, H., Scala, E., & Whalen, M. (2021). Examining the effects of music-based interventions on pain and anxiety in hospitalized children: An integrative review. Journal of Pediatric Nursing, 60, 71–76. doi.org/10.1016/j.pedn.2021.02.007
Kain, Z. N. (1996). Preoperative anxiety in children. Archives of Pediatrics & Adolescent Medicine, 150(12), 1238. doi.org/10.1001/archpedi.1996.02170370016002
Kudchadkar, S. R., Aljohani, O. A., & Punjabi, N. M. (2014). Sleep of critically ill children in the pediatric intensive care unit: A systematic review. Sleep Medicine Reviews, 18(2), 103–110. doi.org/10.1016/j.smrv.2013.02.002
Li, W. H. C., Chung, J. O. K., Ho, K. Y., & Kwok, B. M. C. (2016). Play interventions to reduce anxiety and negative emotions in hospitalized children. BMC Pediatrics, 16(1), 36. doi.org/10.1186/s12887-016-0570-5
Li, H. C. W., & Lopez, V. (2008). Effectiveness and appropriateness of therapeutic play intervention in preparing children for surgery: A randomized controlled trial study. Journal for Specialists in Pediatric Nursing, 13(2), 63–73. doi.org/10.1111/j.1744-6155.2008.00138.x
Rennick, J. E., & Rashotte, J. (2009). Psychological outcomes in children following pediatric intensive care unit hospitalization: A systematic review of the research. Journal of Child Health Care, 13(2), 128–149. doi.org/10.1177/1367493509102472
Silva, R. D. M. D., Austregésilo, S. C., Ithamar, L., & Lima, L. S. D. (2017). Therapeutic play to prepare children for invasive procedures: A systematic review. Jornal de Pediatria, 93(1), 6–16. doi.org/10.1016/j.jped.2016.06.005
Traube, C., Silver, G., Reeder, R. W., Doyle, H., Hegel, E., Wolfe, H. A., Schneller, C., Chung, M. G., Dervan, L. A., DiGennaro, J. L., Buttram, S. D. W., Kudchadkar, S. R., Madden, K., Hartman, M. E., deAlmeida, M. L., Walson, K., Ista, E., Baarslag, M. A., Salonia, R., ... Bell, M. J. (2017). Delirium in critically ill children: An international point prevalence study. Critical Care Medicine, 45(4), 584–590. doi.org/10.1097/ccm.0000000000002250
Turkel, S. B. (2017). Pediatric delirium: Recognition, management, and outcome. Current Psychiatry Reports, 19(12), 101. doi.org/10.1007/s11920-017-0851-1
Wong, C. L., Ip, W. Y., Kwok, B. M. C., Choi, K. C., Ng, B. K. W., & Chan, C. W. H. (2018). Effects of therapeutic play on children undergoing cast-removal procedures: A randomised controlled trial. BMJ Open, 8(7), e021071. doi.org/10.1136/bmjopen-2017-021071
Consent, understanding, and shared decision-making
Appelbaum, P. S., Roth, L. H., Lidz, C. W., Benson, P., & Winslade, W. (1987). False hopes and best data: Consent to research and the therapeutic misconception. The Hastings Center Report, 17(2), 20–24. doi.org/10.2307/3562038
Batchelor, E., Kentor, R. A., Reeves, C., Farner, H., Mehler, S., Christianson, C., & Kaye, E. C. (2025). Understanding the why: Patient, parent, and oncologist perspectives on prognostic communication preferences in advanced childhood cancer. Children, 12(9), 1140. doi.org/10.3390/children12091140
Bluebond-Langner, M., Belasco, J. B., Goldman, A., & Belasco, C. (2007). Understanding parents’ approaches to care and treatment of children with cancer when standard therapy has failed. Journal of Clinical Oncology, 25(17), 2414–2419. doi.org/10.1200/jco.2006.08.7759
Christianson, C., Reeves, C., Farner, H., Mehler, S., Brinkman, T. M., Baker, J. N., Hinds, P., Mack, J. W., & Kaye, E. C. (2025). Preferences for communication about prognosis among children with cancer, parents, and oncologists. JAMA Network Open, 8(4), e255431. doi.org/10.1001/jamanetworkopen.2025.5431
Cousino, M. K., Zyzanski, S. J., Yamokoski, A. D., Hazen, R. A., Baker, J. N., Noll, R. B., Rheingold, S. R., Geyer, J. R., Alexander, S. C., Drotar, D., & Kodish, E. D. (2012). Communicating and understanding the purpose of pediatric phase I cancer trials. Journal of Clinical Oncology, 30(35), 4367–4372. doi.org/10.1200/jco.2012.42.3004
Fagerlin, A., Pignone, M., Abhyankar, P., Col, N., Feldman-Stewart, D., Gavaruzzi, T., Kryworuchko, J., Levin, C. A., Pieterse, A. H., Reyna, V., Stiggelbout, A., Scherer, L. D., Wills, C., & Witteman, H. O. (2013). Clarifying values: An updated review. BMC Medical Informatics and Decision Making, 13(S2), S8. doi.org/10.1186/1472-6947-13-s2-s8
Fisher, B., Cormack, C. L., Haskamp, A. C., Hagen, K. A., & Logan, A. (2025). A rapid review on shared decision making in pediatric palliative care and end-of-life care. Journal of Hospice & Palliative Nursing, 27(1), 12–19. doi.org/10.1097/njh.0000000000001089
Flory, J., & Emanuel, E. (2004). Interventions to improve research participants' understanding in informed consent for research. JAMA, 292(13), 1593–1601. doi.org/10.1001/jama.292.13.1593
Grier, K., Koch, A., & Docherty, S. (2023). Pediatric goals of care communication. Journal of Hospice & Palliative Nursing, 25(1), E24–E30. doi.org/10.1097/njh.0000000000000923
Mack, J. W., Wolfe, J., Grier, H. E., Cleary, P. D., & Weeks, J. C. (2006). Communication about prognosis between parents and physicians of children with cancer: Parent preferences and the impact of prognostic information. Journal of Clinical Oncology, 24(33), 5265–5270. doi.org/10.1200/jco.2006.06.5326
Nishimura, A., Carey, J., Erwin, P. J., Tilburt, J. C., Murad, M. H., & McCormick, J. B. (2013). Improving understanding in the research informed consent process: A systematic review of 54 interventions tested in randomized control trials. BMC Medical Ethics, 14(1), Article 28. doi.org/10.1186/1472-6939-14-28
Stober, S., Hoffmann, S., & Metzing, S. (2026). Integration of pediatric palliative care in oncology: A scoping review. The Journal of Pediatrics: Clinical Practice, 20, 200205. doi.org/10.1016/j.jpedcp.2026.200205
How language shapes experience
Cox, C., & Fritz, Z. (2022). Presenting complaint: Use of language that disempowers patients. BMJ, 377, e066720. doi.org/10.1136/bmj-2021-066720
Haskard Zolnierek, K. B., & DiMatteo, M. R. (2009). Physician communication and patient adherence to treatment. Medical Care, 47(8), 826–834. doi.org/10.1097/mlr.0b013e31819a5acc
Lee Adawi Awdish, R., Grafton, G., & Berry, L. L. (2024). Never-words: What not to say to patients with serious illness. Mayo Clinic Proceedings, 99(10), 1553–1557. doi.org/10.1016/j.mayocp.2024.05.011
Levinson, W., Roter, D. L., Mullooly, J. P., Dull, V. T., & Frankel, R. M. (1997). Physician-patient communication the relationship with malpractice claims among primary care physicians and surgeons. JAMA: The Journal of the American Medical Association, 277(7), 553–559. doi.org/10.1001/jama.1997.03540310051034
Nyborn, J. A., Olcese, M., Nickerson, T., & Mack, J. W. (2016). “Don't try to cover the sky with your hands”: Parents' experiences with prognosis communication about their children with advanced cancer. Journal of Palliative Medicine, 19(6), 626–631. doi.org/10.1089/jpm.2015.0472
Odedra, R., Averill, P., Nijman, R. G., Wiemker, V., Hariharan, B., & Mayer, E. (2026). Understanding how language barriers in the paediatric emergency care setting influences safety of care delivery: A scoping review. Emergency Medicine Journal, 43(8), 472–478. doi.org/10.1136/emermed-2025-215617
Street, R. L., Makoul, G., Arora, N. K., & Epstein, R. M. (2009). How does communication heal? Pathways linking clinician–patient communication to health outcomes. Patient Education and Counseling, 74(3), 295–301. doi.org/10.1016/j.pec.2008.11.015
Caregiver and clinician burden
Bratches, R. W. R., Wall, J. A., Puga, F., Pilonieta, G., Jablonski, R., Bakitas, M., Geldmacher, D. S., & Odom, J. N. (2023). Patient portal use among family caregivers of individuals with dementia and cancer: Regression analysis from the national study of caregiving. JMIR Aging, 6, e44166–e44166. doi.org/10.2196/44166
Curtis, J. R., Treece, P. D., Nielsen, E. L., Gold, J., Ciechanowski, P. S., Shannon, S. E., Khandelwal, N., Young, J. P., & Engelberg, R. A. (2016). Randomized trial of communication facilitators to reduce family distress and intensity of end-of-life care. American Journal of Respiratory and Critical Care Medicine, 193(2), 154–162. doi.org/10.1164/rccm.201505-0900oc
Figley, C. R. (2002). Compassion fatigue: Psychotherapists' chronic lack of self care. Journal of Clinical Psychology, 58(11), 1433–1441. doi.org/10.1002/jclp.10090
Given, B. A., Given, C. W., & Kozachik, S. (2001). Family support in advanced cancer. CA: A Cancer Journal for Clinicians, 51(4), 213–231. doi.org/10.3322/canjclin.51.4.213
Jeong, S., Knackstedt, A., Linebarger, J. S., & Carter, B. S. (2024). Moral distress and pediatric palliative care. Children, 11(7), 751. doi.org/10.3390/children11070751
Kuster, P. A., Badr, L. K., Chang, B. L., Wuerker, A. K., & Benjamin, A. E. (2004). Factors influencing health promoting activities of mothers caring for ventilator-assisted children. Journal of Pediatric Nursing, 19(4), 276–287. doi.org/10.1016/j.pedn.2004.05.009
Larson, C. P., Dryden-Palmer, K. D., Gibbons, C., & Parshuram, C. S. (2017). Moral distress in PICU and neonatal ICU practitioners: A cross-sectional evaluation. Pediatric Critical Care Medicine, 18(8), e318–e326. doi.org/10.1097/pcc.0000000000001219
Lautrette, A., Darmon, M., Megarbane, B., Joly, L. M., Chevret, S., Adrie, C., Barnoud, D., Bleichner, G., Bruel, C., Choukroun, G., Curtis, J. R., Fieux, F., Galliot, R., Garrouste-Orgeas, M., Georges, H., Goldgran-Toledano, D., Jourdain, M., Loubert, G., Reignier, J., ... Azoulay, E. (2007). A communication strategy and brochure for relatives of patients dying in the ICU. New England Journal of Medicine, 356(5), 469–478. doi.org/10.1056/nejmoa063446
Raina, P., O'Donnell, M., Schwellnus, H., Rosenbaum, P., King, G., Brehaut, J., Russell, D., Swinton, M., King, S., Wong, M., Walter, S. D., & Wood, E. (2004). Caregiving process and caregiver burden: Conceptual models to guide research and practice. BMC Pediatrics, 4(1), 1. doi.org/10.1186/1471-2431-4-1
Tawfik, D. S., Profit, J., Morgenthaler, T. I., Satele, D. V., Sinsky, C. A., Dyrbye, L. N., Tutty, M. A., West, C. P., & Shanafelt, T. D. (2018). Physician burnout, well-being, and work unit safety grades in relationship to reported medical errors. Mayo Clinic Proceedings, 93(11), 1571–1580. doi.org/10.1016/j.mayocp.2018.05.014
Yagiela, L. M., Carlton, E. F., Meert, K. L., Odetola, F. O., & Cousino, M. K. (2019). Parent medical traumatic stress and associated family outcomes after pediatric critical illness: A systematic review. Pediatric Critical Care Medicine, 20(8), 759–768. doi.org/10.1097/pcc.0000000000001985
Lived experience as expertise
Cooper, A. P., Nguyen, L., Irelewuyi, O., & Miller, S. P. (2024). Conducting patient-oriented research in pediatric populations: A narrative review. Children, 11(10), 1266. doi.org/10.3390/children11101266
Crocker, J. C., Ricci-Cabello, I., Parker, A., Hirst, J. A., Chant, A., Petit-Zeman, S., Evans, D., & Rees, S. (2018). Impact of patient and public involvement on enrolment and retention in clinical trials: Systematic review and meta-analysis. BMJ, 363, k4738. doi.org/10.1136/bmj.k4738
Domecq, J. P., Prutsky, G., Elraiyah, T., Wang, Z., Nabhan, M., Shippee, N., Brito, J. P., Boehmer, K., Hasan, R., Firwana, B., Erwin, P., Eton, D., Sloan, J., Montori, V., Asi, N., Abu Dabrh, A. M., & Murad, M. H. (2014). Patient engagement in research: A systematic review. BMC Health Services Research, 14(1), 89. doi.org/10.1186/1472-6963-14-89
Malloy, J., Partridge, S. R., Kemper, J. A., Braakhuis, A., & Roy, R. (2023). Co-design of digital health interventions with young people: A scoping review. Digital Health, 9, Article 20552076231219117. doi.org/10.1177/20552076231219117
Sacristán, J. A., Aguarón, A., Avendaño-Solá, C., Garrido, P., Carrión, J., Gutiérrez, A., Kroes, R., & Flores, A. (2016). Patient involvement in clinical research: Why, when, and how. Patient Preference and Adherence, 10, 631–640. doi.org/10.2147/ppa.s104259
Shippee, N. D., Domecq Garces, J. P., Prutsky Lopez, G. J., Wang, Z., Elraiyah, T. A., Nabhan, M., Brito, J. P., Boehmer, K., Hasan, R., Firwana, B., Erwin, P. J., Montori, V. M., & Murad, M. H. (2015). Patient and service user engagement in research: A systematic review and synthesized framework. Health Expectations, 18(5), 1151–1166. doi.org/10.1111/hex.12090
Staniszewska, S., Brett, J., Simera, I., Seers, K., Mockford, C., Goodlad, S., Altman, D. G., Moher, D., Barber, R., Denegri, S., Entwistle, A., Littlejohns, P., Morris, C., Suleman, R., Thomas, V., & Tysall, C. (2017). GRIPP2 reporting checklists: Tools to improve reporting of patient and public involvement in research. BMJ, 358, j3453. doi.org/10.1136/bmj.j3453
Knowing when more care is harmful
Anderson, W. G., Arnold, R. M., Angus, D. C., & Bryce, C. L. (2008). Posttraumatic stress and complicated grief in family members of patients in the intensive care unit. Journal of General Internal Medicine, 23(11), 1871–1876. doi.org/10.1007/s11606-008-0770-2
Bruce, C. R., Miller, S. M., & Zimmerman, J. L. (2015). A qualitative study exploring moral distress in the ICU team. Critical Care Medicine, 43(4), 823–831. doi.org/10.1097/ccm.0000000000000822
Cuviello, A., Johnson, L. M., Morgan, K. J., Anghelescu, D. L., & Baker, J. N. (2022). Palliative sedation therapy in pediatrics: An algorithm and clinical practice update. Children, 9(12), 1887. doi.org/10.3390/children9121887
Epstein, E. G., & Hamric, A. B. (2009). Moral distress, moral residue, and the crescendo effect. The Journal of Clinical Ethics, 20(4), 330–342. doi.org/10.1086/jce200920406
Lichtenthal, W. G., Corner, G. W., Sweeney, C. R., Wiener, L., Roberts, K. E., Baser, R. E., Li, Y., Breitbart, W., Kissane, D. W., & Prigerson, H. G. (2015). Mental health services for parents who lost a child to cancer: If we build them, will they come? Journal of Clinical Oncology, 33(20), 2246–2253. doi.org/10.1200/jco.2014.59.0406
Mack, J. W., Cronin, A., Keating, N. L., Taback, N., Huskamp, H. A., Malin, J. L., Earle, C. C., & Weeks, J. C. (2012). Associations between end-of-life discussion characteristics and care received near death: A prospective cohort study. Journal of Clinical Oncology, 30(35), 4387–4395. doi.org/10.1200/jco.2012.43.6055
Quill, T. E., & Byock, I. R. (2000). Responding to intractable terminal suffering: The role of terminal sedation and voluntary refusal of food and fluids. Annals of Internal Medicine, 132(5), 408–414. doi.org/10.7326/0003-4819-132-5-200003070-00012
Snaman, J. M., Mazzola, E., Helton, G., Feifer, D., Morris, S. E., Clark, L., Baker, J. N., & Wolfe, J. (2023). Early bereavement psychosocial outcomes in parents of children who died of cancer with a focus on social functioning. JCO Oncology Practice, 19(4), e527–e541. doi.org/10.1200/op.22.00538
Temel, J. S., Greer, J. A., Muzikansky, A., Gallagher, E. R., Admane, S., Jackson, V. A., Dahlin, C. M., Blinderman, C. D., Jacobsen, J., Pirl, W. F., Billings, J. A., & Lynch, T. J. (2010). Early palliative care for patients with metastatic non–small-cell lung cancer. New England Journal of Medicine, 363(8), 733–742. doi.org/10.1056/nejmoa1000678
Wolfe, J., Grier, H. E., Klar, N., Levin, S. B., Ellenbogen, J. M., Salem-Schatz, S., Emanuel, E. J., & Weeks, J. C. (2000). Symptoms and suffering at the end of life in children with cancer. New England Journal of Medicine, 342(5), 326–333. doi.org/10.1056/nejm200002033420506
Wright, A. A., Keating, N. L., Ayanian, J. Z., Chrischilles, E. A., Kahn, K. L., Ritchie, C. S., Weeks, J. C., Earle, C. C., & Landrum, M. B. (2016). Family perspectives on aggressive cancer care near the end of life. JAMA, 315(3), 284–292. doi.org/10.1001/jama.2015.18604
Wright, A. A., Zhang, B., Ray, A., Mack, J. W., Trice, E., Balboni, T., Mitchell, S. L., Jackson, V. A., Block, S. D., Maciejewski, P. K., & Prigerson, H. G. (2008). Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA, 300(14), 1665–1673. doi.org/10.1001/jama.300.14.1665
Zimmermann, C., Swami, N., Krzyzanowska, M., Hannon, B., Leighl, N., Oza, A., Moore, M., Rydall, A., Rodin, G., Tannock, I., Donner, A., & Lo, C. (2014). Early palliative care for patients with advanced cancer: A cluster-randomised controlled trial. The Lancet, 383(9930), 1721–1730. doi.org/10.1016/s0140-6736(13)62416-2
Guidelines, standards, and books
American Medical Association. (n.d.). Informed consent (Code of Medical Ethics Opinion 2.1.1). AMA. code-medical-ethics.ama-assn.org
Beauchamp, T. L., & Childress, J. F. (2019). Principles of biomedical ethics (8th ed.). Oxford University Press.
Council for International Organizations of Medical Sciences. (2016). International ethical guidelines for health-related research involving humans (4th ed.). CIOMS. cioms.ch
Federal Policy for the Protection of Human Subjects, 82 Fed. Reg. 7149 (Jan. 19, 2017) (codified at 45 C.F.R. pt. 46). federalregister.gov
Institute of Medicine. (2001). Crossing the quality chasm: A new health system for the 21st century. National Academies Press. doi.org/10.17226/10027
International Council for Harmonisation of Technical Requirements for Pharmaceuticals for Human Use. (2025). ICH harmonised guideline E6(R3): Guideline for good clinical practice. ich.org
National Institute for Health and Care Research. (2019). UK standards for public involvement. NIHR. sites.google.com
Patient-Centered Outcomes Research Institute. (n.d.). Foundational expectations for partnerships in research. PCORI. pcori.org
U.S. Food and Drug Administration. (n.d.). Patient-focused drug development guidance series. U.S. Department of Health and Human Services. fda.gov
Worden, J. W. (2018). Grief counseling and grief therapy: A handbook for the mental health practitioner (5th ed.). Springer.
World Health Organization. (2012). WHO guidelines on the pharmacological treatment of persisting pain in children with medical illnesses. World Health Organization. who.int
World Health Organization. (2018). Integrating palliative care and symptom relief into paediatrics. World Health Organization. who.int