Bamm EL, Rosenbaum P (2008) Family-centered theory: origins, development, barriers, and supports to implementation in rehabilitation medicine. Arch Phys Med Rehabil 89(8):1618–1624

Article  PubMed  Google Scholar 

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):147–159

Article  CAS  PubMed  Google Scholar 

Adams RC, Levy SE, COUNCIL ON CHILDREN WITH DISABILITIES (2017) Shared decision-making and children with disabilities: pathways to consensus. Pediatrics 139(6):e20170956. https://doi.org/10.1542/peds.2017-0956

de Vos MA, Bos AP, Plötz 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–e476

Article  PubMed  Google Scholar 

Park ES, Cho IY (2018) Shared decision-making in the paediatric field: a literature review and concept analysis. Scand J Caring Sci 32(2):478–489

Article  PubMed  Google Scholar 

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):523–539

Article  PubMed  PubMed Central  Google Scholar 

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):1361–1367

Article  PubMed  PubMed Central  Google Scholar 

Makoul G, Clayman ML (2006) An integrative model of shared decision making in medical encounters. Patient Educ Couns 60(3):301–312

Article  PubMed  Google Scholar 

Stiggelbout AM, Pieterse AH, De Haes JC (2015) Shared decision making: concepts, evidence, and practice. Patient Educ Couns 98(10):1172–1179

Article  CAS  PubMed  Google Scholar 

Wong Chung R, Willemen A, Voorman J, Ketelaar M, Becher J, Verheijden J, Schuengel C (2019) Managing oneself or managing together? Parents’ perspectives on chronic condition self-management in Dutch pediatric rehabilitation services. Disabil Rehab 42:3348

Article  Google Scholar 

Sánchez-Rubio L, Cleveland LM, Durán de Villalobos MM, McGrath JM (2021) Parental decision-making in pediatric intensive care: a concept analysis. J Pediatric Nursing 59:115–24

Article  Google Scholar 

Wong Chung R, Willemen A, Voorman J, Ketelaar M, Becher J, Schuengel C (2021) Professionals’ motivation to support parental self-management regarding children with physical disability in Dutch rehabilitation services: ‘Please mind your gap.’ Child Care Health Dev 47(5):685–696

Article  PubMed  PubMed Central  Google Scholar 

Masolo C, Vieu L, Bottazzi E, Catenacci C, Ferrario R, Gangemi A, Guarino N (2004) Social roles and their descriptions. In: International Conference on Principles of Knowledge Representation and Reasoning, pp 267–277

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

Article  PubMed  Google Scholar 

MacKean GL, Thurston WE, Scott CM (2005) Bridging the divide between families and health professionals’ perspectives on family-centred care. Health Expect 8(1):74–85

Article  PubMed  PubMed Central  Google Scholar 

Kahveci R, Ayhan D, Döner P, Cihan FG, Koç EM (2014) Shared decision-making in pediatric intensive care units: a qualitative study with physicians, nurses and parents. Indian J Pediatr 81(12):1287–1292

Article  PubMed  Google Scholar 

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–S13

Article  PubMed  Google Scholar 

Arksey H, O’Malley L (2005) Scoping studies: towards a methodological framework. Int J Social Res Methodol: Theory & Practice 8:19–32

Article  Google Scholar 

Hansen H, Draborg E, Kristensen F (2011) Exploring qualitative research synthesis: the role of patients’ perspectives in health policy design and decision making. Patient 2011(4):143–152

Article  Google Scholar 

Lipstein EA, Britto MT (2015) Evolution of pediatric chronic disease treatment decisions: a qualitative, longitudinal view of parents’ decision-making process. Med Decis Making 35(6):703–713

Article  PubMed  PubMed Central  Google Scholar 

Tricco AC, Lillie E, Zarin W, O’Brien KK, Colquhoun H, Levac D et al (2018) PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med 169(7):467–473

Article  PubMed  Google Scholar 

Ouzzani M, Hammady H, Fedorowicz Z, Elmagarmid A (2016) Rayyan-a web and mobile app for systematic reviews. Syst Rev 5(1):210

Article  PubMed  PubMed Central  Google Scholar 

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

Google Scholar 

Munn Z, Tufanaru C, Aromataris E (2014) JBI’s systematic reviews: data extraction and synthesis. Am J Nurs 114(7):49–54

Article  PubMed  Google Scholar 

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 35:29–45

Article  PubMed  Google Scholar 

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):442–52

Article  Google Scholar 

Hallström I, Elander G (2005) Decision making in paediatric care: an overview with reference to nursing care. Nurs Ethics 12(3):223–238

Article  PubMed  Google Scholar 

Higgins SS (2001) Parental role in decision making about pediatric cardiac transplantation: familial and ethical considerations. J Pediatr Nurs 16(5):332–337

Article  CAS  PubMed  Google Scholar 

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):13–24

Article  CAS  PubMed  Google Scholar 

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):680–686

Article  PubMed  Google Scholar 

Sisk BA, Kang TI, Goldstein R, DuBois JM, Mack JW (2019) Decisional burden among parents of children with cancer. Cancer 125(8):1365–1372

Article  PubMed  Google Scholar 

Stewart JL, Pyke-Grimm KA, Kelly KP (2005) Parental treatment decision making in pediatric oncology. Semin Oncol Nurs 21(2):89–97

Article  PubMed  Google Scholar 

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):122–132

Article  PubMed  Google Scholar 

Tom DM, Aquino C, Arredondo AR, Foster BA (2017) Parent preferences for shared decision-making in acute versus chronic illness. Hosp Pediatr 7(10):602–609

Article  PubMed  PubMed Central  Google Scholar 

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–S73

Article  PubMed  Google Scholar 

Salvador Á, 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):1059–1067

Article  PubMed  Google Scholar 

MacKean GL, Thurston WE, Scott CM (2005) Bridging the divide between families and health professionals’ perspectives on family-centred care. Health Expectations: Intl J Public Particip Health Care & Health Policy 8(1):74–85

Article