Developing rights-based standards for children having tests, treatments, examinations and interventions: using a collaborative, multi-phased, multi-method and multi-stakeholder approach to build consensus

Bray, Lucy; Carter, Bernie; Kiernan, Joann; Horowicz, Ed; Dixon, Katie; Ridley, James; Robinson, Carol; Simmons, Anna; Craske, Jennie; Sinha, Stephanie; Morton, Liza; Nafria, Begonya; Forsner, Maria; Rullander, Anna-Clara; Nilsson, Stefan; Darcy, Laura; Karlsson, Katarina; Hubbuck, Cath; Brenner, Maria; Spencer-Little, Sian; Evans, Kath; Rowland, Andrew; Hilliard, Carol; Preston, Jennifer; Leroy, Piet L.; Roland, Damian; Booth, Lisa; Davies, Jean; Saron, Holly; Mansson, Marie Edwinson; Cox, Ann; Ford, Karen; Campbell, Steven; Blamires, Julie; Dickinson, Annette; Neufeld, Michael; Peck, Blake; de Avila, Marla; Feeg, Veronica; Mediani, Henny Suzana; Atout, Maha; Majamanda, Maureen D.; North, Natasha; Chambers, Christine; Robichaud, Fanny

Abstract

Children continue to experience harm when undergoing clinical procedures despite increased evidence of the need to improve the provision of child-centred care. The international ISupport collaboration aimed to develop standards to outline and explain good procedural practice and the rights of children within the context of a clinical procedure. The rights-based standards for children undergoing tests, treatments, investigations, examinations and interventions were developed using an iterative, multi-phased, multi-method and multi-stakeholder consensus building approach. This consensus approach used a range of online and face to face methods across three phases to ensure ongoing engagement with multiple stakeholders. The views and perspectives of 203 children and young people, 78 parents and 418 multi-disciplinary professionals gathered over a two year period (2020-2022) informed the development of international rights-based standards for the care of children having tests, treatments, examinations and interventions. The standards are the first to reach international multi-stakeholder consensus on definitions of supportive and restraining holds.Conclusion: This is the first study of its kind which outlines international rights-based procedural care standards from multi-stakeholder perspectives. The standards offer health professionals and educators clear evidence-based tools to support discussions and practice changes to challenge prevailing assumptions about holding or restraining children and instead encourage a focus on the interests and rights of the child.

Citation

Bray, L., Carter, B., Kiernan, J., Horowicz, E., Dixon, K., Ridley, J., …Robichaud, F. (in press). Developing rights-based standards for children having tests, treatments, examinations and interventions: using a collaborative, multi-phased, multi-method and multi-stakeholder approach to build consensus. European Journal of Pediatrics, 182(10), 4707-4721. https://doi.org/10.1007/s00431-023-05131-9

• Journal Article Type: Article
• Acceptance Date: Jun 12, 2023
• Online Publication Date: Aug 11, 2023
• Deposit Date: Dec 6, 2023
• Publicly Available Date: Dec 6, 2023
• Journal: European Journal of Pediatrics
• Print ISSN: 0340-6199
• Publisher: Springer Verlag
• Peer Reviewed: Peer Reviewed
• Volume: 182
• Issue: 10
• Pages: 4707-4721
• DOI: https://doi.org/10.1007/s00431-023-05131-9
• Keywords: Pediatrics, Perinatology and Child Health
• Publisher URL: https://link.springer.com/article/10.1007/s00431-023-05131-9#rightslink
• Additional Information: Received: 15 May 2023; Revised: 23 May 2023; Accepted: 12 June 2023; First Online: 11 August 2023; : ; : This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by the Ethics Committee of Edge Hill University, UK (ETH2021-0261), Federation University, Australia (A21-157), Brazil (CAAE 53331321.5.0000.5411 and Opinion No 5.159.191), Spain (review was not deemed necessary by the research institute’s ethics committee as this project did not entail any direct medical intervention to children) and Sweden (Swedish Ethical Review Authority 2022-01380-01).; : Informed consent was obtained from all individual participants included in phase 3 of the study. For the children and young people involved in the research element (Phase 3) informed consent was obtained from the parents by them ticking a box on the survey before allowing their child to enter their views.; : The authors have no relevant financial or non-financial interests to disclose.