Family-centred and child-rights-based care

Overview & Definition

Picture an eight-year-old with a complex chronic illness whose care sprawls across six specialists, a school, and a tired single parent. The question is never just "what is the medical plan?" It is "who is on this team with the child, and does the child and family actually have a say in it?" Family-centred and child-rights-based care is the working answer to that question. [1] [3]

Patient- and family-centred care is an approach in which the clinician and family plan, deliver and evaluate care together as equal partners. The Institute for Patient- and Family-Centered Care frames it through four core concepts that examiners expect you to name: dignity and respect, information sharing, participation, and collaboration. The family is treated as a constant in the child's life, never as a visitor or an obstacle. [1]

Child-rights-based care takes the same partnership and grounds it in a legal frame. The UN Convention on the Rights of the Child is the most widely ratified human rights treaty in history, and it makes the child a rights-holder rather than a passive recipient. Its four guiding principles shape every paediatric encounter: non-discrimination, the best interests of the child, the right to life, survival and development, and the right of the child to be heard and to have their views given due weight. [5]

The two ideas overlap but are not identical. Family-centred care can, if practised carelessly, let "the family will decide" drown out the child's own voice. Child-rights-based care insists that the child holds rights independently of the parent, including the right to accessible information and a say in what happens to their body. The skilled clinician holds both: partners with the family while protecting the child's separate voice. [5] [12]

[1] [3]

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1. [1]COMMITTEE ON HOSPITAL CARE, INSTITUTE FOR PATIENT- AND FAMILY-CENTERED CARE Patient- and family-centered care and the pediatrician's role. Pediatrics, 2012.PMID 22291118
2. [2]American Academy of Pediatrics Committee on Hospital Care Family-centered care and the pediatrician's role. Pediatrics, 2003.PMID 12949306
3. [3]Kuo DZ, Houtrow AJ, Arango P, Kuhlthau KA, Simmons JM, Neff JM Family-centered care: current applications and future directions in pediatric health care. Matern Child Health J, 2012.PMID 21318293
4. [4]Kuo DZ, Frick KD, Minkovitz CS Association of family-centered care with improved anticipatory guidance delivery and reduced unmet needs in child health care. Matern Child Health J, 2011.PMID 21057865
5. [5]Goldhagen JL, Shenoda S, Oberg C, Mercer R, Kadir A, Raman S Rights, justice, and equity: a global agenda for child health and wellbeing. Lancet Child Adolesc Health, 2020.PMID 31757760
6. [6]Quaye AA, Coyne I, Söderbäck M, Hallström IK Children's active participation in decision-making processes during hospitalisation: An observational study. J Clin Nurs, 2019.PMID 31430412
7. [7]Coyne I, Amory A, Gibson F, Kiernan G Information-sharing between healthcare professionals, parents and children with cancer: more than a matter of information exchange. Eur J Cancer Care (Engl), 2016.PMID 26537295
8. [8]Gooding JS, Cooper LG, Blaine AI, Franck LS, Howse JL, Berns SD Family support and family-centered care in the neonatal intensive care unit: origins, advances, impact. Semin Perinatol, 2011.PMID 21255703
9. [9]Shields L, Nixon J Hospital care of children in four countries. J Adv Nurs, 2004.PMID 15009350
10. [10]O'Connor S, Brenner M, Coyne I Family-centred care of children and young people in the acute hospital setting: A concept analysis. J Clin Nurs, 2019.PMID 31099444
11. [11]Al-Motlaq M, Neill S, Foster MJ, Coyne I, Houghton D, Angelhoff C Position Statement of the International Network for Child and Family Centered Care: Child and Family Centred Care during the COVID19 Pandemic. J Pediatr Nurs, 2021.PMID 34052501
12. [12]Alderson P, Sutcliffe K, Curtis K Children as partners with adults in their medical care. Arch Dis Child, 2006.PMID 16399782