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.