An Overview of Children’s Participation in Shared Decision- making in Healthcare Settings
Main Article Content
Abstract
Paediatric settings use shared decision-making, which is also known as the pinnacle of patient-centred care. Nev- ertheless, implementing shared decision-making is relatively challenging as it involves the triad constellation inter- action (communication between parents, children and healthcare professionals). This article provided an overview of previous studies related to children’s involvement levels in health care decisions and the perception of children, healthcare professionals, and parents of children’s participation in shared decision-making. It was concluded that children were engaged minimally in decision-making and most children were involved in minor decisions instead of major decisions. Furthermore, there was a diverse participation pattern, which varied in the same child based on the circumstances.
Downloads
Article Details
References
Barsky EE, Berbert LM, Dahlberg SE, & Truog RD. Attitudes towards involving children in decision- making surrounding lung transplantation. Pediatric Pulmonology. 2021;56(6):1534–1542. doi: 10.1002/ppul.25321
Park ES, & Cho IY. Shared decision-making in the paediatric field: a literature review and concept analysis. Scandinavian Journal of Caring Sciences. 2017;32(2):478–489. doi: 10.1111/scs.12496
Charles C, Gafni A, & Whelan T. Shared decision- making in the medical encounter: What does it mean? (Or it takes, at least two to tango). Social Science and Medicine. 1997; 44(5), 681–692. doi: 10.1016/s0277-9536(96)00221-3.
Wijngaarde RO, Hein I, Daams J, Van Goudoever JB, & Ubbink DT. Chronically ill children’s participation and health outcomes in shared decision-making: a scoping review. European Journal of Pediatrics. 2021;180(8):2345–2357. doi: 10.1007/s00431-021-04055-6.
Minneci PC, Cooper JN, Leonhart K, Nacion K, Sulkowski J, Porter K, Wei L, & Deans KJ. Effects of a Patient Activation Tool on Decision Making Between Surgery and Nonoperative Management for Pediatric Appendicitis: A Randomized Clinical Trial. JAMA Network Open. 2019;2(6):e195009. doi: 10.1001/jamanetworkopen.2019.5009.
Beck CE, Boydell KM, Stasiulis E, Blanchette VS, Llewellyn-Thomas H, Birken CS, Breakey VR, & Parkin PC. Shared decision making in the management of children with newly diagnosed immune thrombocytopenia. Journal of Pediatric Hematology/Oncology. 2014;36(7):559–565. doi: 10.1097/MPH.0000000000000120.
Coyne, I, O’Mathúna DP, Gibson F, Shields L, Leclercq E, & Sheaf G. Interventions for promoting participation in shared decision-making for children with cancer. Cochrane Database of Systematic Reviews. 2016;(11):CD008970. doi: 10.1002/14651858.CD008970.pub3.
Rost M, Wangmo T, Niggli F, Hartmann K, Hengartner H, Ansari M, Brazzola P, Rischewski J, Beck-Popovic M, Kühne T, & Elger BS. 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. doi: 10.1007/s11673-017-9813-x.
MacDonald AI, Chorney J, Bezuhly M, & Hong P. Shared decision-making in older children and parents considering elective adenotonsillectomy. Clinical Otolaryngology. 2020;45(1):32–39. doi: 10.1111/coa.13458.
Carlsson IM, Nygren JM, & Svedberg P. Patient participation, a prerequisite for care: A grounded theory study of healthcare professionals’ perceptions of what participation means in a paediatric care context. Nursing Open. 2017;5(1):45–52. doi: 10.1002/nop2.106
Coyne I, Amory A, Kiernan G, & Gibson F. Children’s participation in shared decision-making: Children, adolescents, parents and healthcare professionals’ perspectives and experiences. European Journal of Oncology Nursing. 2014;18(3):273–280. doi: 10.1016/j.ejon.2014.01.006
Quaye AA, Coyne I, Söderbäck M, & Hallström IK. Children’s active participation in decision-making processes during hospitalisation: An observational study. Journal of Clinical Nursing. 2019;28(23– 24):4525–4537. doi: 10.1111/jocn.15042.
Ruhe KM, Katharina M, Badarau DO, Brazzola P, Hengartner H, Elger BS, & Wangmo T. Participation in pediatric oncology : views of child and adolescent patients. Psycho-Oncology. 2015 Sep;25(9):1036-1042. doi: 10.1002/pon.4053
Ruhe KM, Katharina Maria, Wangmo T, Clercq ED, Badarau DO, Ansari M, Kühne T, & Niggli F. Putting patient participation into practice in pediatrics — results from a qualitative study in pediatric oncology. European Journal of Pediatrics. 2016;175(9):1147–1155. doi: 10.1007/s00431-016-2754-2
Schalkers I, Parsons CS, Bunders JFG, & Deddin, C. Health professionals’ perspectives on children’ s and young people’ s participation in health care: a qualitative multihospital study. Journal of Clinical Nursing. 2016;25(7-8):1035–1044. doi: 10.1111/jocn.13152
Sjöberg C, Amhliden H, Nygren JM, Arvidsson S, & Svedberg P. The perspective of children on factors influencing their participation in perioperative care. Journal of Clinical Nursing. 2015;24(19– 20):2945–2953. doi: 10.1111/jocn.12911
Harder M, Söderbäck M, & Ranheim A. Health care professionals’ perspective on children’s participation in health care situations: encounters in mutuality and alienation. International Journal of Qualitative Studies on Health and Well-Being. 2018;13(1): 155542. doi:10.1080/17482631.2018.1555421.
Vigilante VA, Hossain J, Wysocki T, & Sharif I. Correlates of type and quantity of child communication during pediatric subspecialty encounters. Patient Education and Counseling. 2015;98(11):1352–1359. doi: 10.1016/j. pec.2015.05.001
Wiering BM, Noordman J, Tates K, Zwaanswijk M, Elwyn G, De Bont ESJM, Beishuizen A, Hoogerbrugge PM, & Van Dulmen S. Sharing decisions during diagnostic consultations; an observational study in pediatric oncology. Patient Education and Counseling. 2016;99(1):61–67. doi: 10.1016/j.pec.2015.07.026.
Feragen KB, Myhre A, & Stock NM. “Exposed and Vulnerable”: Parent Reports of Their Child’s Experience of Multidisciplinary Craniofacial Consultations. Cleft Palate-Craniofacial Journal. 2019; 56(9), 1230–1238. doi: 10.1177/1055665619851650.
Gilljam BM, Arvidsson S, Nygren JM, Svedberg P. Promoting participation in healthcare situations for children with JIA: a grounded theory study. Int J Qual Stud Health Well-being. 2016;11:30518. doi:10.3402/qhw.v11.30518
Bennett KG, Patterson AK, Schafer K, Haase M, Ranganathan K, Carlozzi N, Vercler CJ, Kasten SJ, Buchman SR, & Waljee JF. Decision- Making in Cleft-Related Surgery: A Qualitative Analysis of Patients and Caregivers. Cleft Palate- Craniofacial Journal. 2020;57(2):161–168. doi: 10.1177/1055665619866552.
Fay M, Guadarrama J, Colmenares-Roa T, Moreno- Licona I, Cruz-Martin AG, & Peláez-Ballestas I. The relationship between proxy agency and the medical decisions concerning pediatric patients in palliative care: a qualitative study. BMC Palliative Care. 2021; 20(1), 1–11. doi: 10.1186/s12904-021-00723-4.
Gutman T, Hanson CS, Bernays S, et al. Child and parental perspectives on communication and decision-making in pediatric chronic kidney disease: a focus group study. American Journal of Kidney Diseases. 2018; 38, 81–95. doi: 10.1053/j. ajkd.2018.05.005.
O’Connor D, Lynch H, & Boyle B. A qualitative study of child participation in approaches in pediatric occupational therapy. PLoS ONE. 2021;1–21. doi: 10.1371/journal.pone.0260975
Kelly KP, Mowbray C, Pyke-Grimm K, & Hinds PS. Identifying a conceptual shift in child and adolescent-reported treatment decision making: “Having a say, as I need at this time.” Pediatric Blood and Cancer. 2017; 64(4), 1–8. doi: 10.1002/ pbc.26262
Kerklaan J, Hanson CS, Carter S, Tong A, Sinha A, Dart A, Eddy AA, Guha C, Gipson DS, Bockenhauer D, Hannan E, Yap HK, Groothoff J, Zappitelli M, Amir N, Alexander SI, Furth SL, Samuel S, Gutman T, & Craig JC. Perspectives of Clinicians on Shared Decision Making in Pediatric CKD: A Qualitative Study. American Journal of Kidney Diseases. 2022; 80(2), 241–250. doi: 10.1053/j.ajkd.2021.12.009
Koller D. ‘Kids need to talk too’: inclusive practices for children’s healthcare education and participation. J Clin Nurs. 2017;26(17-18):2657- 2668. doi:10.1111/jocn.13703
Lundberg V, Eriksson C, Lind T, Coyne I, & Fjellman- Wiklund A. How children with juvenile idiopathic arthritis view participation and communication in healthcare encounters: a qualitative study. Pediatric Rheumatology. 2021; 19(1), 1–12. doi: 10.1186/s12969-021-00642-x
Melong J, Meier J, & Hong P. Shared decision making during surgical consultations: An observational study in pediatric otolaryngology. European Annals of Otorhinolaryngology, Head and Neck Diseases. 2019; 136(3), S15–S19. doi: 10.1016/j.anorl.2018.09.002.
Sahlberg S, Karlsson K, & Darcy L. Children’s rights as law in Sweden–every health-care encounter needs to meet the child’s needs. Health Expectations. 2020; 23(4), 860–869. doi: 10.1111/ hex.13060.
Teleman B, Vinblad E, Svedberg P, Nygren JM, & Larsson I. Exploring barriers to participation in pediatric rehabilitation: Voices of children and young people with disabilities, parents, and professionals. International Journal of Environmental Research and Public Health. 2021; 18(19):10119. doi: 10.3390/ijerph181910119.
Vinblad E, Larsson I, Lönn M, Olsson E, Nygren JM, & Svedberg P. Development of a digital decision support tool to aid participation of children with disabilities in pediatric rehabilitation services: Explorative qualitative study. JMIR Formative Research. 2019;. 3(4). doi: 10.2196/14493.
Jeremic V, Sénécal K, Borry P, Chokoshvili D, & Vears DF. Participation of Children in Medical Decision-Making: Challenges and Potential Solutions. Journal of Bioethical Inquiry. 2016;13(4):525–534. doi: 10.1007/s11673-016-9747-8
Lee SP, Haycock-Sturat E, & Tisdall K. Participation in communication and decisions with regards to nursing care: The role of children. Enfermería Clínica. 2019; 29(2): 715-719. doi: 10.1016/j.enfcli.2019.04.109