Participation of Children in Medical Decision-Making: Challenges and Potential Solutions
- 1.7k Downloads
Participation in healthcare decision-making is considered to be an important right of minors, and is highlighted in both international legislation and public policies. However, despite the legal recognition of children’s rights to participation, and also the benefits that children experience by their involvement, there is evidence that legislation is not always translated into healthcare practice. There are a number of factors that may impact on the ability of the child to be involved in decisions regarding their medical care. Some of these factors relate to the child, including their capacity to be actively involved in these decisions. Others relate to the family situation, sociocultural context, or the underlying beliefs and practices of the healthcare provider involved. In spite of these challenges to including children in decisions regarding their clinical care, we argue that it is an important factor in their treatment. The extent to which children should participate in this process should be determined on a case-by-case basis, taking all of the potential barriers into account.
KeywordsChild Adolescent Participation Healthcare Decision-making
Research Fund Flanders (Belgium) and the Ministère de l’Économie, de l’Innovation et des Exportations du Québec, PSR-SIIRI-850 (Canada).
- Alderson, P. 1990. Choosing for children: Parents’ consent to surgery. Oxford: Oxford University Press.Google Scholar
- ———. 1993. Children’s consent to surgery. Buckingham: Open University Press.Google Scholar
- ———. 2007. Competent children? Minors’ consent to health care treatment and research. Social Science and Medicine 65(11): 2272–2283.Google Scholar
- Alderson, P., and J. Montgomery. 1996. Health care choices: Making decisions with children. London: Institute for Public Policy Research.Google Scholar
- Baltag, V., and A. Mathieson. 2010. Youth friendly health policies and services in European region: Sharing experience. Copenhagen: WHO Regional office for Europe.Google Scholar
- British Medical Association. 2012. Medical ethics today: The BMA’s handbook of ethics and law. John Wiley & Sons.Google Scholar
- Charland, L.C. 2015. Decision-making capacity. In The Stanford encyclopedia of philosophy, fall 2015 ed, edited by E.N. Zalta. http://plato.stanford.edu/archives/fall2015/entries/decision-capacity/. Accessed January 27, 2016.
- Council of Europe. 1997. Convention for the protection of human rights and dignity of the human being with regard to the application of biology and medicine. ETS no. 164. http://conventions.coe.int/treaty/en/treaties/html/164.htm. Accessed May 15, 2015.
- ———. 2011. Guidelines of the Committee of Ministers of the Council of Europe on child-friendly health care and their explanatory memorandum. http://www.coe.int/t/dg3/health/Guidelines_on_child_friendly_health_care__English_version_.pdf Accessed January 24, 2016.
- ———. 2008. Children’s participation in consultations and decision-making at health service level: A review of the literature. International Journal of Nursing Studies 45(11): 1682–1689.Google Scholar
- ———. 2011. Children’s participation in decision-making: Balancing protection with shared decision-making using a situational perspective. Journal of Child Health Care 15(4): 312–319.Google Scholar
- Coyne I., and P. Gallagher. 2011. Participation in communication and decision-making: Children and young people’s experiences in a hospital setting. Journal of Clinical Nursing 20(15–16): 2334–2343.Google Scholar
- English, A. 2007. Sexual and reproductive healthcare for adolescents: Legal rights and policy challenges. Adolescent Medicine: State of the Art Review 18(3): 571–581.Google Scholar
- European Commission. 2015. Evaluation of legislation, policy and practice on child participation in European Union (EU)—Final Report. Luxembourg: Publications Office of the European Union.Google Scholar
- Harrison, C. 2004. Position statement: Treatment decisions regarding infants, children and adolescents. Paediatrics & Child Health 9(2): 99–103.Google Scholar
- Kilkelly, U. 2011. Child-friendly health care: The views and experiences of children and young people in Council of Europe member States 2011. Council of Europe: Document MSN 1 E. https://www.crin.org/en/library/publications/child-friendly-health-care-views-and-experiences-children-and-young-people. Accessed January 31, 2016.
- Kohrman, A., E. Wright Clayton, J.E. Frader, et al. 1995. Informed consent, parental permission, and assent in pediatric practice. Pediatrics 95(2): 314–317.Google Scholar
- Lansdown, G. 2005. The evolving capacities of the child. UNICEF Innocenti Insights: No. innins05/18. https://ideas.repec.org/p/ucf/innins/innins05-18.html. Accessed August 25, 2015.
- Larcher, V., and A. Hutchinson. 2010. How should paediatricians assess Gillick competence? Archives of Disease in Childhood 9(4) : 307–311.Google Scholar
- Nuffield Council on Bioethics. 2015. Children and clinical research: Ethical issues. London: Nuffield Council on Bioethics.Google Scholar
- ———. 2013. The mature minor: Some critical psychological reflections on the empirical bases. Journal of Medicine and Philosophy 38(3): 332–346.Google Scholar
- Centre for Biomedical Ethics and Law. 2008. EU member states: General overview. Leuven: Katholieke Universiteit Leuven. http://europatientrights.eu/countries/eu_member_states.html. Accessed January 24, 2016.
- Ross, L.F. 1998. Children, families and health care decision-making. Oxford: Clarendon Press.Google Scholar
- Runeson, I., G. Elander, G. Hermerén, and I. Kristensson-Hallstrom. 2000. Children’s consent to treatment: Using a scale to assess degrees of self-determination. Pediatric Nursing 26(5): 16–22.Google Scholar
- Sasse, R.A., R.A. Aroni, S.M. Sawyer, and R.E. Duncan. 2013. Confidential consultations with adolescents: An exploration of Australian parents’ perspectives. Journal of Adolescent Health 52(6): 786–791.Google Scholar
- United Nations General Assembly. 1989. Convention on the rights of the child. United Nations, Treaty Series 1577: no. 3.Google Scholar
- United Nations Committee on the Rights of the Child. 2003. CRC general comment No. 4: Adolescent health and development in the context of the Convention on the Rights of the Child. CRC/GC/2003/4. http://www.refworld.org/docid/4538834f0.html. Accessed May 15, 2015.
- World Health Organization (WHO). 2014. Investing in children: The European child and adolescent health strategy 2015–2020. Copenhagen: WHO Regional office for Europe.Google Scholar