{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,1]],"date-time":"2026-07-01T04:37:04Z","timestamp":1782880624095,"version":"3.54.5"},"reference-count":72,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2024,12,19]],"date-time":"2024-12-19T00:00:00Z","timestamp":1734566400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.springernature.com\/gp\/researchers\/text-and-data-mining"},{"start":{"date-parts":[[2024,12,19]],"date-time":"2024-12-19T00:00:00Z","timestamp":1734566400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/www.springernature.com\/gp\/researchers\/text-and-data-mining"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Eur J Pediatr"],"DOI":"10.1007\/s00431-024-05930-8","type":"journal-article","created":{"date-parts":[[2024,12,19]],"date-time":"2024-12-19T02:44:10Z","timestamp":1734576250000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["Exploring the \u201cshared\u201d in shared decision-making in the care for children with chronic diseases or disabilities: what are the roles of parents and professionals?"],"prefix":"10.1007","volume":"184","author":[{"given":"M. W.","family":"Alsem","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"A.","family":"Bakkum","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"M.","family":"Ketelaar","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"A. M.","family":"Willemen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2024,12,19]]},"reference":[{"issue":"8","key":"5930_CR1","doi-asserted-by":"crossref","first-page":"1618","DOI":"10.1016\/j.apmr.2007.12.034","volume":"89","author":"EL Bamm","year":"2008","unstructured":"Bamm EL, Rosenbaum P (2008) Family-centered theory: origins, development, barriers, and supports to implementation in rehabilitation medicine. Arch Phys Med Rehabil 89(8):1618\u20131624","journal-title":"Arch Phys Med Rehabil"},{"issue":"1","key":"5930_CR2","doi-asserted-by":"crossref","first-page":"147","DOI":"10.1111\/cch.12128","volume":"41","author":"C Camden","year":"2015","unstructured":"Camden C, Wilson B, Kirby A, Sugden D, Missiuna C (2015) Best practice principles for management of children with developmental coordination disorder (DCD): results of a scoping review. Child Care Health Dev 41(1):147\u2013159","journal-title":"Child Care Health Dev"},{"key":"5930_CR3","doi-asserted-by":"publisher","unstructured":"Adams RC, Levy SE,\u00a0COUNCIL ON CHILDREN WITH DISABILITIES\u00a0(2017) Shared decision-making and children with disabilities: pathways to consensus. Pediatrics 139(6):e20170956.\u00a0https:\/\/doi.org\/10.1542\/peds.2017-0956","DOI":"10.1542\/peds.2017-0956"},{"issue":"2","key":"5930_CR4","doi-asserted-by":"crossref","first-page":"e465","DOI":"10.1542\/peds.2014-1903","volume":"135","author":"MA de Vos","year":"2015","unstructured":"de Vos MA, Bos AP, Pl\u00f6tz FB, van Heerde M, de Graaff BM, Tates K et al (2015) Talking with parents about end-of-life decisions for their children. Pediatrics 135(2):e465\u2013e476","journal-title":"Pediatrics"},{"issue":"2","key":"5930_CR5","doi-asserted-by":"crossref","first-page":"478","DOI":"10.1111\/scs.12496","volume":"32","author":"ES Park","year":"2018","unstructured":"Park ES, Cho IY (2018) Shared decision-making in the paediatric field: a literature review and concept analysis. Scand J Caring Sci 32(2):478\u2013489","journal-title":"Scand J Caring Sci"},{"issue":"3","key":"5930_CR6","doi-asserted-by":"crossref","first-page":"523","DOI":"10.1111\/hex.13040","volume":"23","author":"M Bird","year":"2020","unstructured":"Bird M, Ouellette C, Whitmore C, Li L, Nair K, McGillion MH et al (2020) Preparing for patient partnership: a scoping review of patient partner engagement and evaluation in research. Health Expect 23(3):523\u2013539","journal-title":"Health Expect"},{"issue":"10","key":"5930_CR7","doi-asserted-by":"crossref","first-page":"1361","DOI":"10.1007\/s11606-012-2077-6","volume":"27","author":"G Elwyn","year":"2012","unstructured":"Elwyn G, Frosch D, Thomson R, Joseph-Williams N, Lloyd A, Kinnersley P et al (2012) Shared decision making: a model for clinical practice. J Gen Intern Med 27(10):1361\u20131367","journal-title":"J Gen Intern Med"},{"issue":"3","key":"5930_CR8","doi-asserted-by":"crossref","first-page":"301","DOI":"10.1016\/j.pec.2005.06.010","volume":"60","author":"G Makoul","year":"2006","unstructured":"Makoul G, Clayman ML (2006) An integrative model of shared decision making in medical encounters. Patient Educ Couns 60(3):301\u2013312","journal-title":"Patient Educ Couns"},{"issue":"10","key":"5930_CR9","doi-asserted-by":"crossref","first-page":"1172","DOI":"10.1016\/j.pec.2015.06.022","volume":"98","author":"AM Stiggelbout","year":"2015","unstructured":"Stiggelbout AM, Pieterse AH, De Haes JC (2015) Shared decision making: concepts, evidence, and practice. Patient Educ Couns 98(10):1172\u20131179","journal-title":"Patient Educ Couns"},{"key":"5930_CR10","doi-asserted-by":"crossref","first-page":"3348","DOI":"10.1080\/09638288.2019.1594396","volume":"42","author":"R Wong Chung","year":"2019","unstructured":"Wong Chung R, Willemen A, Voorman J, Ketelaar M, Becher J, Verheijden J, Schuengel C (2019) Managing oneself or managing together? Parents\u2019 perspectives on chronic condition self-management in Dutch pediatric rehabilitation services. Disabil Rehab 42:3348","journal-title":"Disabil Rehab"},{"key":"5930_CR11","doi-asserted-by":"crossref","first-page":"115","DOI":"10.1016\/j.pedn.2021.03.018","volume":"59","author":"L S\u00e1nchez-Rubio","year":"2021","unstructured":"S\u00e1nchez-Rubio L, Cleveland LM, Dur\u00e1n de Villalobos MM, McGrath JM (2021) Parental decision-making in pediatric intensive care: a concept analysis. J Pediatric Nursing 59:115\u201324","journal-title":"J Pediatric Nursing"},{"issue":"5","key":"5930_CR12","doi-asserted-by":"crossref","first-page":"685","DOI":"10.1111\/cch.12883","volume":"47","author":"R Wong Chung","year":"2021","unstructured":"Wong Chung R, Willemen A, Voorman J, Ketelaar M, Becher J, Schuengel C (2021) Professionals\u2019 motivation to support parental self-management regarding children with physical disability in Dutch rehabilitation services: \u2018Please mind your gap.\u2019 Child Care Health Dev 47(5):685\u2013696","journal-title":"Child Care Health Dev"},{"key":"5930_CR13","unstructured":"Masolo C, Vieu L, Bottazzi E, Catenacci C, Ferrario R, Gangemi A, Guarino N (2004) Social roles and their descriptions.\u00a0In: International Conference on Principles of Knowledge Representation and Reasoning, pp 267\u2013277"},{"key":"5930_CR14","doi-asserted-by":"crossref","first-page":"103887","DOI":"10.1016\/j.ridd.2021.103887","volume":"111","author":"KA Smith","year":"2021","unstructured":"Smith KA, Samuels AE (2021) A scoping review of parental roles in rehabilitation interventions for children with developmental delay, disability, or long-term health condition. Res Dev Disabil 111:103887","journal-title":"Res Dev Disabil"},{"issue":"1","key":"5930_CR15","doi-asserted-by":"crossref","first-page":"74","DOI":"10.1111\/j.1369-7625.2005.00319.x","volume":"8","author":"GL MacKean","year":"2005","unstructured":"MacKean GL, Thurston WE, Scott CM (2005) Bridging the divide between families and health professionals\u2019 perspectives on family-centred care. Health Expect 8(1):74\u201385","journal-title":"Health Expect"},{"issue":"12","key":"5930_CR16","doi-asserted-by":"crossref","first-page":"1287","DOI":"10.1007\/s12098-014-1431-6","volume":"81","author":"R Kahveci","year":"2014","unstructured":"Kahveci R, Ayhan D, D\u00f6ner P, Cihan FG, Ko\u00e7 EM (2014) Shared decision-making in pediatric intensive care units: a qualitative study with physicians, nurses and parents. Indian J Pediatr 81(12):1287\u20131292","journal-title":"Indian J Pediatr"},{"key":"5930_CR17","doi-asserted-by":"crossref","first-page":"S5","DOI":"10.1002\/lary.25616","volume":"126","author":"P Hong","year":"2016","unstructured":"Hong P, Gorodzinsky AY, Taylor BA, Chorney JM (2016) Parental decision making in pediatric otoplasty: the role of shared decision making in parental decisional conflict and decisional regret. Laryngoscope 126:S5\u2013S13","journal-title":"Laryngoscope"},{"key":"5930_CR18","doi-asserted-by":"crossref","first-page":"19","DOI":"10.1080\/1364557032000119616","volume":"8","author":"H Arksey","year":"2005","unstructured":"Arksey H, O\u2019Malley L (2005) Scoping studies: towards a methodological framework. Int J Social Res Methodol: Theory & Practice 8:19\u201332","journal-title":"Int J Social Res Methodol: Theory & Practice"},{"issue":"4","key":"5930_CR19","doi-asserted-by":"crossref","first-page":"143","DOI":"10.2165\/11539880-000000000-00000","volume":"2011","author":"H Hansen","year":"2011","unstructured":"Hansen H, Draborg E, Kristensen F (2011) Exploring qualitative research synthesis: the role of patients\u2019 perspectives in health policy design and decision making. Patient 2011(4):143\u2013152","journal-title":"Patient"},{"issue":"6","key":"5930_CR20","doi-asserted-by":"crossref","first-page":"703","DOI":"10.1177\/0272989X15581805","volume":"35","author":"EA Lipstein","year":"2015","unstructured":"Lipstein EA, Britto MT (2015) Evolution of pediatric chronic disease treatment decisions: a qualitative, longitudinal view of parents\u2019 decision-making process. Med Decis Making 35(6):703\u2013713","journal-title":"Med Decis Making"},{"issue":"7","key":"5930_CR21","doi-asserted-by":"publisher","first-page":"467","DOI":"10.7326\/M18-0850","volume":"169","author":"AC Tricco","year":"2018","unstructured":"Tricco AC, Lillie E, Zarin W, O\u2019Brien KK, Colquhoun H, Levac D et al (2018) PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med 169(7):467\u2013473","journal-title":"Ann Intern Med"},{"issue":"1","key":"5930_CR22","doi-asserted-by":"crossref","first-page":"210","DOI":"10.1186\/s13643-016-0384-4","volume":"5","author":"M Ouzzani","year":"2016","unstructured":"Ouzzani M, Hammady H, Fedorowicz Z, Elmagarmid A (2016) Rayyan-a web and mobile app for systematic reviews. Syst Rev 5(1):210","journal-title":"Syst Rev"},{"key":"5930_CR23","first-page":"372","volume":"2021","author":"MJ Page","year":"2020","unstructured":"Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, The PRISMA et al (2020) statement: an updated guideline for reporting systematic reviews. BMJ 2021:372","journal-title":"BMJ"},{"issue":"7","key":"5930_CR24","doi-asserted-by":"crossref","first-page":"49","DOI":"10.1097\/01.NAJ.0000451683.66447.89","volume":"114","author":"Z Munn","year":"2014","unstructured":"Munn Z, Tufanaru C, Aromataris E (2014) JBI\u2019s systematic reviews: data extraction and synthesis. Am J Nurs 114(7):49\u201354","journal-title":"Am J Nurs"},{"key":"5930_CR25","doi-asserted-by":"crossref","first-page":"29","DOI":"10.1146\/annurev-publhealth-032013-182440","volume":"35","author":"P Pluye","year":"2014","unstructured":"Pluye P, Hong QN (2014) Combining the power of stories and the power of numbers: mixed methods research and mixed studies reviews. Annu Rev Public Health 35:29\u201345","journal-title":"Annu Rev Public Health"},{"issue":"5","key":"5930_CR26","doi-asserted-by":"crossref","first-page":"442","DOI":"10.1002\/pon.655","volume":"12","author":"EM Gagnon","year":"2003","unstructured":"Gagnon EM, Recklitis CJ (2003) Parents decision-making preferences in pediatric oncology: the relationship to health care involvement and complementary therapy use. Psycho-Oncology: J Psych, Social Behav Dimensions Cancer 12(5):442\u201352","journal-title":"Psycho-Oncology: J Psych, Social Behav Dimensions Cancer"},{"issue":"3","key":"5930_CR27","doi-asserted-by":"crossref","first-page":"223","DOI":"10.1191\/0969733005ne785oa","volume":"12","author":"I Hallstr\u00f6m","year":"2005","unstructured":"Hallstr\u00f6m I, Elander G (2005) Decision making in paediatric care: an overview with reference to nursing care. Nurs Ethics 12(3):223\u2013238","journal-title":"Nurs Ethics"},{"issue":"5","key":"5930_CR28","doi-asserted-by":"crossref","first-page":"332","DOI":"10.1053\/jpdn.2001.27209","volume":"16","author":"SS Higgins","year":"2001","unstructured":"Higgins SS (2001) Parental role in decision making about pediatric cardiac transplantation: familial and ethical considerations. J Pediatr Nurs 16(5):332\u2013337","journal-title":"J Pediatr Nurs"},{"issue":"1","key":"5930_CR29","doi-asserted-by":"crossref","first-page":"13","DOI":"10.1177\/104345429901600103","volume":"16","author":"KA Pyke-Grimm","year":"1999","unstructured":"Pyke-Grimm KA, Degner L, Small A, Mueller B (1999) Preferences for participation in treatment decision making and information needs of parents of children with cancer: a pilot study. J Pediatr Oncol Nurs 16(1):13\u201324","journal-title":"J Pediatr Oncol Nurs"},{"issue":"4","key":"5930_CR30","doi-asserted-by":"crossref","first-page":"680","DOI":"10.1016\/j.pec.2018.11.007","volume":"102","author":"S Scollon","year":"2019","unstructured":"Scollon S, Majumder MA, Bergstrom K, Wang T, McGuire AL, Robinson JO et al (2019) Exome sequencing disclosures in pediatric cancer care: patterns of communication among oncologists, genetic counselors, and parents. Patient Educ Couns 102(4):680\u2013686","journal-title":"Patient Educ Couns"},{"issue":"8","key":"5930_CR31","doi-asserted-by":"crossref","first-page":"1365","DOI":"10.1002\/cncr.31939","volume":"125","author":"BA Sisk","year":"2019","unstructured":"Sisk BA, Kang TI, Goldstein R, DuBois JM, Mack JW (2019) Decisional burden among parents of children with cancer. Cancer 125(8):1365\u20131372","journal-title":"Cancer"},{"issue":"2","key":"5930_CR32","doi-asserted-by":"crossref","first-page":"89","DOI":"10.1016\/j.soncn.2004.12.003","volume":"21","author":"JL Stewart","year":"2005","unstructured":"Stewart JL, Pyke-Grimm KA, Kelly KP (2005) Parental treatment decision making in pediatric oncology. Semin Oncol Nurs 21(2):89\u201397","journal-title":"Semin Oncol Nurs"},{"issue":"2","key":"5930_CR33","doi-asserted-by":"crossref","first-page":"122","DOI":"10.1016\/j.acap.2012.12.003","volume":"13","author":"CJ Stille","year":"2013","unstructured":"Stille CJ, Fischer SH, La Pelle N, Dworetzky B, Mazor KM, Cooley WC (2013) Parent partnerships in communication and decision making about subspecialty referrals for children with special needs. Acad Pediatr 13(2):122\u2013132","journal-title":"Acad Pediatr"},{"issue":"10","key":"5930_CR34","doi-asserted-by":"crossref","first-page":"602","DOI":"10.1542\/hpeds.2017-0049","volume":"7","author":"DM Tom","year":"2017","unstructured":"Tom DM, Aquino C, Arredondo AR, Foster BA (2017) Parent preferences for shared decision-making in acute versus chronic illness. Hosp Pediatr 7(10):602\u2013609","journal-title":"Hosp Pediatr"},{"issue":"Supplement 1","key":"5930_CR35","doi-asserted-by":"crossref","first-page":"S567","DOI":"10.1542\/peds.2018-0478H","volume":"142","author":"L Ursin","year":"2018","unstructured":"Ursin L, Syltern J (2018) In the Best interest of the... parents: Norwegian health personnel on the proper role of parents in neonatal decision-making. Pediatrics 142(Supplement 1):S567\u2013S73","journal-title":"Pediatrics"},{"issue":"3","key":"5930_CR36","doi-asserted-by":"crossref","first-page":"1059","DOI":"10.1007\/s00520-019-04909-8","volume":"28","author":"\u00c1 Salvador","year":"2020","unstructured":"Salvador \u00c1, Crespo C, Roberto MS, Barros L (2020) Do parents of children with cancer want to participate in treatment decision-making? Support Care Cancer 28(3):1059\u20131067","journal-title":"Support Care Cancer"},{"issue":"1","key":"5930_CR37","doi-asserted-by":"crossref","first-page":"74","DOI":"10.1111\/j.1369-7625.2005.00319.x","volume":"8","author":"GL MacKean","year":"2005","unstructured":"MacKean GL, Thurston WE, Scott CM (2005) Bridging the divide between families and health professionals\u2019 perspectives on family-centred care. Health Expectations: Intl J Public Particip Health Care & Health Policy 8(1):74\u201385","journal-title":"Health Expectations: Intl J Public Particip Health Care & Health Policy"},{"key":"5930_CR38","first-page":"18","volume":"46","author":"RA Bennett","year":"2019","unstructured":"Bennett RA, LeBaron VT (2019) Parental perspectives on roles in end-of-life decision making in the pediatric intensive care unit: an integrative review. J Pediatric Nursing-Nursing Care Children & Fam 46:18\u201325","journal-title":"J Pediatric Nursing-Nursing Care Children & Fam"},{"issue":"5","key":"5930_CR39","doi-asserted-by":"crossref","first-page":"623","DOI":"10.1111\/cch.12700","volume":"45","author":"MW Alsem","year":"2019","unstructured":"Alsem MW, Verhoef M, Braakman J, van Meeteren KM, Siebes RC, Jongmans MJ et al (2019) Parental empowerment in paediatric rehabilitation exploring the role of a digital tool to help parents prepare for consultation with a physician. Child: Care, Health Dev 45(5):623\u201336","journal-title":"Child: Care, Health Dev"},{"issue":"9","key":"5930_CR40","doi-asserted-by":"crossref","first-page":"594","DOI":"10.1111\/j.1440-1754.2011.02177.x","volume":"47","author":"L Gillam","year":"2011","unstructured":"Gillam L, Sullivan J (2011) Ethics at the end of life: who should make decisions about treatment limitation for young children with life-threatening or life-limiting conditions? J Paediatr Child Health 47(9):594\u2013598","journal-title":"J Paediatr Child Health"},{"issue":"3","key":"5930_CR41","doi-asserted-by":"crossref","first-page":"367","DOI":"10.1046\/j.1365-2702.2003.00877.x","volume":"13","author":"I Hallstr\u00f6m","year":"2004","unstructured":"Hallstr\u00f6m I, Elander G (2004) Decision-making during hospitalization: parents\u2019 and children\u2019s involvement. J Clin Nurs 13(3):367\u2013375","journal-title":"J Clin Nurs"},{"issue":"2","key":"5930_CR42","doi-asserted-by":"crossref","first-page":"203","DOI":"10.1191\/0969733002ne499oa","volume":"9","author":"I Hallstr\u00f6m","year":"2002","unstructured":"Hallstr\u00f6m I, Runeson I, Elander G (2002) An observational study of the level at which parents participate in decisions during their child\u2019s hospitalization. Nurs Ethics 9(2):203\u2013214","journal-title":"Nurs Ethics"},{"issue":"4","key":"5930_CR43","doi-asserted-by":"crossref","first-page":"492","DOI":"10.1111\/1552-6909.12222","volume":"42","author":"SA Rosenthal","year":"2013","unstructured":"Rosenthal SA, Nolan MT (2013) A meta-ethnography and theory of parental ethical decision making in the neonatal intensive care unit. J Obstet Gynecol Neonatal Nurs 42(4):492\u2013502","journal-title":"J Obstet Gynecol Neonatal Nurs"},{"key":"5930_CR44","doi-asserted-by":"crossref","unstructured":"Sisk BA, DuBois J, Kodish E, Wolfe J, Feudtner C (2017) Navigating decisional discord: the pediatrician\u2019s role when child and parents disagree. Pediatrics 139(6)","DOI":"10.1542\/peds.2017-0234"},{"issue":"10","key":"5930_CR45","doi-asserted-by":"crossref","first-page":"3151","DOI":"10.1007\/s00520-017-3723-7","volume":"25","author":"L Tenniglo","year":"2017","unstructured":"Tenniglo L, Loeffen E, Kremer L, Font-Gonzalez A, Mulder R, Postma A et al (2017) Patients\u2019 and parents\u2019 views regarding supportive care in childhood cancer. Support Care Cancer 25(10):3151\u20133160","journal-title":"Support Care Cancer"},{"issue":"3","key":"5930_CR46","doi-asserted-by":"crossref","first-page":"413","DOI":"10.1542\/peds.101.3.413","volume":"101","author":"A van der Heide","year":"1998","unstructured":"van der Heide A, van Der Maas PJ, van Der Wal G, Koll\u00e9e LA, De Leeuw R, Holl RA (1998) The role of parents in end-of-life decisions in neonatology: physicians\u2019 views and practices. Pediatrics 101(3):413\u2013418","journal-title":"Pediatrics"},{"issue":"4","key":"5930_CR47","doi-asserted-by":"crossref","first-page":"558","DOI":"10.1111\/j.1365-2214.2009.01038.x","volume":"36","author":"I \u00d8ien","year":"2010","unstructured":"\u00d8ien I, Fallang B, \u00d8stensj\u00f8 S (2010) Goal-setting in paediatric rehabilitation: perceptions of parents and professional. Child: Care, Health Dev 36(4):558\u201365","journal-title":"Child: Care, Health Dev"},{"key":"5930_CR48","doi-asserted-by":"crossref","first-page":"18","DOI":"10.1016\/j.pedn.2020.02.009","volume":"52","author":"AM Kerr","year":"2020","unstructured":"Kerr AM, Harrington NG, Scott AM (2020) Uncertainty management and decision making: parents\u2019 experiences during their first visit to a multidisciplinary clinic for their child\u2019s vascular anomaly. J Pediatr Nurs 52:18\u201324","journal-title":"J Pediatr Nurs"},{"issue":"2","key":"5930_CR49","doi-asserted-by":"crossref","first-page":"177","DOI":"10.1111\/j.1365-2834.2012.01457.x","volume":"22","author":"A Aarthun","year":"2014","unstructured":"Aarthun A, Akerjordet K (2014) Parent participation in decision-making in health-care services for children: an integrative review. J Nurs Manag 22(2):177\u2013191","journal-title":"J Nurs Manag"},{"issue":"2","key":"5930_CR50","doi-asserted-by":"crossref","first-page":"116","DOI":"10.1111\/j.1365-2524.2006.00599.x","volume":"14","author":"B Young","year":"2006","unstructured":"Young B, Moffett JK, Jackson D, McNulty A (2006) Decision-making in community-based paediatric physiotherapy: a qualitative study of children, parents and practitioners. Health Soc Care Community 14(2):116\u2013124","journal-title":"Health Soc Care Community"},{"key":"5930_CR51","doi-asserted-by":"crossref","first-page":"35","DOI":"10.1186\/1471-2431-7-35","volume":"7","author":"M Zwaanswijk","year":"2007","unstructured":"Zwaanswijk M, Tates K, van Dulmen S, Hoogerbrugge PM, Kamps WA, Bensing JM (2007) Young patients\u2019, parents\u2019, and survivors\u2019 communication preferences in paediatric oncology: results of online focus groups. BMC Pediatr 7:35","journal-title":"BMC Pediatr"},{"issue":"11","key":"5930_CR52","doi-asserted-by":"crossref","first-page":"2260","DOI":"10.1016\/j.pec.2020.04.027","volume":"103","author":"F Buchanan","year":"2020","unstructured":"Buchanan F, Cohen E, Milo-Manson G, Shachak A (2020) What makes difficult decisions so difficult?: an activity theory analysis of decision making for physicians treating children with medical complexity. Patient Educ Couns 103(11):2260\u20132268","journal-title":"Patient Educ Couns"},{"issue":"2","key":"5930_CR53","doi-asserted-by":"crossref","first-page":"111","DOI":"10.1097\/00004703-199904000-00007","volume":"20","author":"HM Feldman","year":"1999","unstructured":"Feldman HM, Ploof D, Cohen WI (1999) Physician-family partnerships: the adaptive practice model. J Dev Behav Pediatr 20(2):111\u2013116","journal-title":"J Dev Behav Pediatr"},{"issue":"1","key":"5930_CR54","doi-asserted-by":"crossref","first-page":"110","DOI":"10.1177\/1367493520910832","volume":"25","author":"J Reeder","year":"2021","unstructured":"Reeder J, Morris J (2021) Becoming an empowered parent. How do parents successfully take up their role as a collaborative partner in their child\u2019s specialist care? J Child Health Care 25(1):110\u201325","journal-title":"J Child Health Care"},{"issue":"8","key":"5930_CR55","doi-asserted-by":"crossref","first-page":"1094","DOI":"10.1016\/j.acap.2020.06.004","volume":"20","author":"WA Gower","year":"2020","unstructured":"Gower WA, Golden SL, King NM, Nageswaran S (2020) Decision-making about tracheostomy for children with medical complexity: caregiver and health care provider perspectives. Acad Pediatr 20(8):1094\u20131100","journal-title":"Acad Pediatr"},{"issue":"10","key":"5930_CR56","doi-asserted-by":"crossref","first-page":"2876","DOI":"10.1097\/CCM.0b013e31825b9151","volume":"40","author":"VN Madrigal","year":"2012","unstructured":"Madrigal VN, Carroll KW, Hexem KR, Faerber JA, Morrison WE, Feudtner C (2012) Parental decision-making preferences in the pediatric intensive care unit. Crit Care Med 40(10):2876\u20132882","journal-title":"Crit Care Med"},{"issue":"1","key":"5930_CR57","doi-asserted-by":"crossref","DOI":"10.1097\/PCC.0b013e31826e7408","volume":"14","author":"KN Michelson","year":"2013","unstructured":"Michelson KN, Patel R, Haber-Barker N, Emanuel L, Frader J (2013) End-of-life care decisions in the pediatric intensive care unit: roles professionals play. Pediatric Critical Care Med 14(1):e34","journal-title":"Pediatric Critical Care Med"},{"key":"5930_CR58","doi-asserted-by":"crossref","first-page":"283","DOI":"10.1016\/j.ridd.2016.09.012","volume":"59","author":"IH Zaal-Schuller","year":"2016","unstructured":"Zaal-Schuller IH, Willems DL, Ewals F, van Goudoever JB, de Vos MA (2016) How parents and physicians experience end-of-life decision-making for children with profound intellectual and multiple disabilities. Res Dev Disabil 59:283\u2013293","journal-title":"Res Dev Disabil"},{"issue":"6","key":"5930_CR59","doi-asserted-by":"crossref","first-page":"723","DOI":"10.1111\/cch.12802","volume":"46","author":"L Sj\u00f6berg","year":"2020","unstructured":"Sj\u00f6berg L, Hermansson L, Lindner H, Fredriksson C (2020) Swedish parents\u2019 experiences of their role in treatment for children with congenital limb reduction deficiency: decision-making and treatment support. Child: Care, Health Dev 46(6):723\u201332","journal-title":"Child: Care, Health Dev"},{"issue":"12","key":"5930_CR60","doi-asserted-by":"crossref","first-page":"1287","DOI":"10.1007\/s12098-014-1431-6","volume":"81","author":"R Kahveci","year":"2014","unstructured":"Kahveci R, Ayhan D, D\u00f6ner P, Cihan FG, Ko\u00e7 EM (2014) Shared decision-making in pediatric intensive care units: a qualitative study with physicians, nurses and parents. Indian J Pediatrics 81(12):1287\u20131292","journal-title":"Indian J Pediatrics"},{"issue":"3","key":"5930_CR61","doi-asserted-by":"crossref","first-page":"238","DOI":"10.1097\/NJH.0000000000000335","volume":"19","author":"CA Richards","year":"2017","unstructured":"Richards CA, Starks H, O\u2019Connor MR, Doorenbos AZ (2017) Elements of family-centered care in the pediatric intensive care unit: an integrative review. J Hospice Palliative Nursing 19(3):238","journal-title":"J Hospice Palliative Nursing"},{"issue":"1","key":"5930_CR62","doi-asserted-by":"crossref","first-page":"2","DOI":"10.1097\/DCC.0000000000000503","volume":"41","author":"AC Fisk","year":"2022","unstructured":"Fisk AC, Mott S, Meyer S, Connor JA (2022) Parent perception of their role in the pediatric cardiac intensive care unit. Dimens Crit Care Nurs 41(1):2\u20139","journal-title":"Dimens Crit Care Nurs"},{"key":"5930_CR63","doi-asserted-by":"crossref","first-page":"666","DOI":"10.1016\/j.pedhc.2024.01.001","volume":"38","author":"M Yi","year":"2024","unstructured":"Yi M, Jia Y, Zhao B, Chen O (2024) The barriers to shared decision-making in exercise prescription for children with asthma: a qualitative study from parents\u2019 perspective. J Pediatr Health Care 38:666","journal-title":"J Pediatr Health Care"},{"issue":"4","key":"5930_CR64","doi-asserted-by":"crossref","first-page":"669","DOI":"10.1177\/1049909117734843","volume":"35","author":"CA Richards","year":"2018","unstructured":"Richards CA, Starks H, O\u2019Connor MR, Bourget E, Hays RM, Doorenbos AZ (2018) Physicians perceptions of shared decision-making in neonatal and pediatric critical care. Am J Hospice Palliat Med 35(4):669\u201376","journal-title":"Am J Hospice Palliat Med"},{"key":"5930_CR65","first-page":"1","volume":"32","author":"T Jenkin","year":"2020","unstructured":"Jenkin T, Anderson V, D\u2019Cruz K, Collins A, Muscara F, Scheinberg A, Knight S (2020) Engaging children and adolescents with acquired brain injury and their families in goal setting: the clinician perspective. Neuropsychol Rehab 32:1\u201327","journal-title":"Neuropsychol Rehab"},{"key":"5930_CR66","doi-asserted-by":"publisher","unstructured":"Sisk BA, Friedrich A, Blazin LJ, Baker JN, Mack JW, DuBois J (2020) Communication in pediatric oncology: a qualitative study. Pediatrics 146(3):e20201193.\u00a0https:\/\/doi.org\/10.1542\/peds.2020-1193","DOI":"10.1542\/peds.2020-1193"},{"issue":"1","key":"5930_CR67","doi-asserted-by":"crossref","first-page":"e13167","DOI":"10.1111\/cch.13167","volume":"50","author":"IS Klatte","year":"2024","unstructured":"Klatte IS, Ketelaar M, de Groot A, Bloemen M, Gerrits E (2024) Collaboration: how does it work according to therapists and parents of young children? A systematic review. Child Care Health Dev 50(1):e13167","journal-title":"Child Care Health Dev"},{"key":"5930_CR68","unstructured":"NICE. https:\/\/www.nice.org.uk\/about\/what-we-do\/our-programmes\/nice-guidance\/nice-guidelines\/shared-decision-making.\u00a0Accessed 17 Dec 2024"},{"issue":"5","key":"5930_CR69","doi-asserted-by":"crossref","first-page":"685","DOI":"10.1111\/cch.12883","volume":"47","author":"R Wong Chung","year":"2021","unstructured":"Wong Chung R, Willemen A, Voorman J, Ketelaar M, Becher J, Schuengel C (2021) Professionals\u2019 motivation to support parental self-management regarding children with physical disability in Dutch rehabilitation services: \u2018Please mind your gap.\u2019 Child: Care, Health Dev 47(5):685\u201396","journal-title":"Child: Care, Health Dev"},{"key":"5930_CR70","first-page":"208","volume":"5","author":"KM Van","year":"2015","unstructured":"Van KM (2015) pati\u00ebntgerichte zorg naar gezinsgerichte zorg: family empowerment. Nederlands Tijdschrift voor Revalidatiegeneeskunde 5:208\u2013210","journal-title":"Nederlands Tijdschrift voor Revalidatiegeneeskunde"},{"issue":"1\u20133","key":"5930_CR71","doi-asserted-by":"crossref","first-page":"21","DOI":"10.1016\/j.pec.2005.11.014","volume":"64","author":"BC Schouten","year":"2006","unstructured":"Schouten BC, Meeuwesen L (2006) Cultural differences in medical communication: a review of the literature. Patient Educ Couns 64(1\u20133):21\u201334","journal-title":"Patient Educ Couns"},{"issue":"2","key":"5930_CR72","doi-asserted-by":"publisher","first-page":"740","DOI":"10.1111\/hex.13699","volume":"26","author":"B B\u00fcdenbender","year":"2023","unstructured":"B\u00fcdenbender B, K\u00f6ther AK, Gr\u00fcne B, Michel MS, Kriegmair MC, Alpers GW (2023) When attitudes and beliefs get in the way of shared decision-making: a mediation analysis of participation preference. Health Expect 26(2):740\u2013751. https:\/\/doi.org\/10.1111\/hex.13699","journal-title":"Health Expect"}],"container-title":["European Journal of Pediatrics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s00431-024-05930-8.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s00431-024-05930-8\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s00431-024-05930-8.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,1,24]],"date-time":"2025-01-24T14:44:59Z","timestamp":1737729899000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s00431-024-05930-8"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,12,19]]},"references-count":72,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2025,1]]}},"alternative-id":["5930"],"URL":"https:\/\/doi.org\/10.1007\/s00431-024-05930-8","relation":{},"ISSN":["1432-1076"],"issn-type":[{"value":"1432-1076","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,12,19]]},"assertion":[{"value":"13 June 2024","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"26 November 2024","order":2,"name":"revised","label":"Revised","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"13 December 2024","order":3,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"19 December 2024","order":4,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Not applicable.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval"}},{"value":"The authors declare no competing interests.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"91"}}