Future directions
There is a great need for further research in this area. This research ought to be expanded with a larger sample size to further clarify the effects of age and maturity level and to evaluate for replicability across care centers, disease states, and pediatric specialties. Physician preparedness to assess competency and implementation of shared decision-making also warrants investigation, and may shed additional light on this topic. Furthermore, assessing clinician attitudes towards pediatric involvement in decision-making in chronic disease is only one component in identifying barriers to pediatric SDM and increasing implementation. Further investigation of the attitudes of the children and their parents is also warranted. Lastly, there is a need to investigate potential interventions, such as decisional aids, in helping to promote the implementation of SDM in pediatrics.
References
1. McCullough LB. Was bioethics founded on historical and conceptual mistakes about medical paternalism? Bioethics. 2011;25(2):66-74.
2. Laine C, Davidoff F. Patient-centered medicine. A professional evolution. JAMA. 1996;275(2):152-156.
3. JF BTC. Principles of biomedical ethics. 7th ed. Oxford: Oxford University Press;; 2012.
4. Kon AA. The shared decision-making continuum. Jama.2010;304(8):903-904.
5. Adams RC, Levy SE, Council On Children With D. Shared Decision-Making and Children With Disabilities: Pathways to Consensus.Pediatrics. 2017;139(6):e20170956.
6. Barry MJ, Edgman-Levitan S. Shared decision making–pinnacle of patient-centered care. N Engl J Med. 2012;366(9):780-781.
7. Hein IM, Troost PW, Broersma A, de Vries MC, Daams JG, Lindauer RJ. Why is it hard to make progress in assessing children’s decision-making competence? BMC medical ethics. 2015;16:1.
8. Stultiens L, Goffin T, Borry P, Dierickx K, Nys H. Minors and informed consent: a comparative approach. European journal of health law. 2007;14(1):21-46.
9. Grootens-Wiegers P, Hein IM, van den Broek JM, de Vries MC. Medical decision-making in children and adolescents: developmental and neuroscientific aspects. BMC pediatrics. 2017;17(1):120.
10. Katz AL, Webb SA, Committee On B. Informed Consent in Decision-Making in Pediatric Practice. Pediatrics. 2016;138(2).
11. Miller VA, Drotar D, Kodish E. Children’s competence for assent and consent: a review of empirical findings. Ethics & behavior.2004;14(3):255-295.
12. Alderson P, Sutcliffe K, Curtis K. Children’s competence to consent to medical treatment. Hastings Cent Rep. 2006;36(6):25-34.
13. Bluebond-Langner M, Belasco JB, DeMesquita Wander M. ”I want to live, until I don’t want to live anymore”: involving children with life-threatening and life-shortening illnesses in decision making about care and treatment. The Nursing clinics of North America.2010;45(3):329-343.
14. Larcher V, Hutchinson A. How should paediatricians assess Gillick competence? Arch Dis Child. 2010;95(4):307-311.
15. Schoeman F. Parental discretion and children’s rights: background and implications for medical decision-making. The Journal of medicine and philosophy. 1985;10(1):45-61.
16. Kieckhefer GM, Trahms CM. Supporting development of children with chronic conditions: from compliance toward shared management.Pediatr Nurs. 2000;26(4):354-363.
17. Cohen CP. United Nations: Convention on the rights of the child.International Legal Materials. 1989;28(6):1448-1476.
18. Rost M, Wangmo T, Niggli F, et al. Parents’ and Physicians’ Perceptions of Children’s Participation in Decision-making in Paediatric Oncology: A Quantitative Study. Journal of bioethical inquiry.2017;14(4):555-565.
19. Dokken D, Sydnor-Greenberg N. Exploring complementary and alternative medicine in pediatrics: parents and professionals working together for new understanding. Pediatr Nurs. 2000;26(4):383-390.
20. Elf M, Fröst P, Lindahl G, Wijk H. Shared decision making in designing new healthcare environments-time to begin improving quality.BMC health services research. 2015;15:114.
21. Malone H, Biggar S, Javadpour S, Edworthy Z, Sheaf G, Coyne I. Interventions for promoting participation in shared decision-making for children and adolescents with cystic fibrosis. The Cochrane database of systematic reviews. 2019;5(5):Cd012578.
22. McCabe MA. Involving children and adolescents in medical decision making: developmental and clinical considerations. Journal of pediatric psychology. 1996;21(4):505-516.
23. Wangmo T, De Clercq E, Ruhe KM, et al. Better to know than to imagine: Including children in their health care. AJOB empirical bioethics. 2017;8(1):11-20.
24. Lipstein EA, Brinkman WB, Britto MT. What is known about parents’ treatment decisions? A narrative review of pediatric decision making.Med Decis Making. 2012;32(2):246-258.
25. Boland L, Graham ID, Légaré F, et al. Barriers and facilitators of pediatric shared decision-making: a systematic review. Implement Sci. 2019;14(1):7-7.
26. Gabe J, Olumide G, Bury M. ’It takes three to tango’: a framework for understanding patient partnership in paediatric clinics.Social science & medicine (1982). 2004;59(5):1071-1079.
27. Zwaanswijk M, Tates K, van Dulmen S, et al. Communicating with child patients in pediatric oncology consultations: a vignette study on child patients’, parents’, and survivors’ communication preferences.Psychooncology. 2011;20(3):269-277.
28. Ruhe KM, Badarau DO, Elger BS, Wangmo T. End-of-Life Decision Making in Pediatrics: Literature Review on Children’s and Adolescents’ Participation. AJOB empirical bioethics. 2014;5(2):44-54.
29. Zhukovsky DS, Herzog CE, Kaur G, Palmer JL, Bruera E. The impact of palliative care consultation on symptom assessment, communication needs, and palliative interventions in pediatric patients with cancer.Journal of palliative medicine. 2009;12(4):343-349.
30. Pousset G, Bilsen J, Cohen J, Chambaere K, Deliens L, Mortier F. Medical end-of-life decisions in children in Flanders, Belgium: a population-based postmortem survey. Archives of pediatrics & adolescent medicine. 2010;164(6):547-553.
31. Black C. Boy dies of leukemia after refusing treatment for religious reasons. Seattle Post-Intelligencer. 2007.
32. Mercurio MR. An adolescent’s refusal of medical treatment: implications of the Abraham Cheerix case. Pediatrics.2007;120(6):1357-1358.
33. Ross LF. Against the tide: arguments against respecting a minor’s refusal of efficacious life-saving treatment. Cambridge Quarterly of Healthcare Ethics. 2009;18(3):302-315.
34. 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):2334-2343.
35. Grisso T, Vierling L. Minors’ consent to treatment: a developmental perspective. Prof Psychol. 1978;9(3):412-427.
36. Coyne I. Children’s participation in consultations and decision-making at health service level: a review of the literature.International journal of nursing studies. 2008;45(11):1682-1689.
37. Runeson I, Enskar K, Elander G, Hermerén G. Professionals’ perceptions of children’s participation in decision making in healthcare. J Clin Nurs. 2001;10(1):70-78.
38. Broome ME, Richards DJ, Hall JM. Children in research: The experience of ill children and adolescents. Journal of Family Nursing. 2001;7(1):32-49.
39. Donnelly M, Kilkelly U. The child’s right to be heard in the healthcare setting: perspectives of children, parents and health professionals/Ursula Kilkelly, Mary Donnelly. -3576. 2006.
40. Hinds PS, Drew D, Oakes LL, et al. End-of-life care preferences of pediatric patients with cancer. J Clin Oncol.2005;23(36):9146-9154.
41. Sawicki GS, Tiddens H. Managing treatment complexity in cystic fibrosis: challenges and opportunities. Pediatric pulmonology.2012;47(6):523-533.
42. Tuchman LK, Schwartz LA, Sawicki GS, Britto MT. Cystic fibrosis and transition to adult medical care. Pediatrics.2010;125(3):566-573.
43. Stacey D, Légaré F, Lewis K, et al. Decision aids for people facing health treatment or screening decisions. The Cochrane database of systematic reviews. 2017;4(4):Cd001431.