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

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.

Acceptability and feasibility of an app to prepare children for a blood test: An exploratory cohort study

“…Preparing children for needle-related procedures and supporting them before, during and after has been shown to have clear benefits (Dalley and McMurtry, 2016; Uman et al, 2008). Children have better experiences and outcomes if they are prepared for an upcoming procedure, are cared for in an environment that is comfortable, receive pain management and distraction techniques and are coached through the procedure by a calm adult (Bray et al, 2023; Taddio et al, 2009). By providing meaningful information and supporting children to develop positive coping mechanisms and self-regulation, children experience less anxiety and less pain and have shorter appointment times (Orenius et al, 2018).…”

Centring children's lived experiences in understanding the importance of play in hospitals

“…In the UK, commitments to personalised care, patient choice, and shared decision making are embedded in the NHS Long Term Plan (2019). Implementing these practices in paediatric care requires recognition and competence around children's rights and children's agency, which must include competence around play.The emphasis that children place on their sense of choice, ownership, and confidence related to play in a hospital environment speaks to the importance of systematically attending to and including their perspectives on the role and value of play in their health care Bray et al (2023). reported that children and young people find it hard to share their views and have them listened to in health care settings, and that staff lack necessary training to deliver child-centred preparation and information.…”