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 and Carter, Bernie and Kiernan, Joann and Horowicz, Ed and Dixon, Katie and Ridley, James and Robinson, Carol and Simmons, Anna and Craske, Jennie and Sinha, Stephanie and Morton, Liza and Nafria, Begonya and Forsner, Maria and Rullander, Anna-Clara and Nilsson, Stefan and Darcy, Laura and Karlsson, Katarina and Hubbuck, Cath and Brenner, Maria and Spencer-Little, Sian and Evans, Kath and Rowland, Andrew and Hilliard, Carol and Preston, Jennifer and Leroy, Piet L. and Roland, Damian and Booth, Lisa and Davies, Jean and Saron, Holly and Mansson, Marie Edwinson and Cox, Ann and Ford, Karen and Campbell, Steven and Blamires, Julie and Dickinson, Annette and Neufeld, Michael and Peck, Blake and de Avila, Marla and Feeg, Veronica and Mediani, Henny Suzana and Atout, Maha and Majamanda, Maureen D. and North, Natasha and Chambers, Christine and Robichaud, Fanny (2023) 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). pp. 4707-4721. ISSN 1432-1076 (https://doi.org/10.1007/s00431-023-05131-9)

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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. What is Known: • Children continue to experience short and long-term harm when undergoing clinical procedures despite increased evidence of the need to improve the provision of child-centred care. • Professionals report uncertainty and tensions in applying evidence-based practice to children's procedural care. What is New: • This is the first study of its kind which has developed international rights-based procedural care standards from multi-stakeholder perspectives. • The standards are the first to reach international multi-stakeholder consensus on definitions of supportive and restraining holds. [Abstract copyright: © 2023. The Author(s).]

ORCID iDs

Bray, Lucy, Carter, Bernie, Kiernan, Joann, Horowicz, Ed, Dixon, Katie, Ridley, James, Robinson, Carol ORCID logoORCID: https://orcid.org/0000-0001-7363-9735, 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 and Robichaud, Fanny;
CORE (COnnecting REpositories)