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.

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.

Patient involvement in quality improvement: is it time we let children, young people and families take the lead?

It is vital to involve children, young people and families in the design, delivery and improvement of their care. Their involvement can range from individuals giving feedback, such as patient stories, to collaborative work including patient groups and communities helping to develop and commission services. The methods for involving individuals and families include questionnaires and innovative ideas such as feedback Apps. Other methods include the 15 Steps Challenge which helps an organisation to view the care it delivers through a patients eyes and includes a 'walk around' involving a patient, carer, staff member and board member. The Experience Based Design approach is another method of reviewing a service and involves assessing how staff and patients feel when delivering and receiving care. Involving patient groups can be facilitated by working with schools and children's centres. The type of involvement will vary, but if carefully designed can allow meaningful participation and improvement of services.

Work of the NHS England Youth Forum and its effect on health services.

AIM: To examine the role of members of the NHS England Youth Forum (NHSEYF) and the strategies used to influence health service provision for children and young people. METHOD: An evaluative mixed-methods study was commissioned by NHS England and undertaken by the University of Hertfordshire between July 2015 and September 2016. Data collection comprised activity logs, a form of questionnaire, and semi-structured interviews. FINDINGS: The analysis of the activity logs revealed that the young people were undertaking a wide range of activities across England. Seven themes emerged from the interviews: the young people; motivation; commitment; community (the local area as well as a community spirit); knowledge experts; youth workers; and funding. In summary, the members of the NHSEYF were committed to their role and their work was having a positive effect on health service provision. CONCLUSION: The NHSEYF has developed rapidly and successfully. It is enabling the voice of young people to be heard.

An evaluation of the NHS England Youth Forum.

Aim To use qualitative data collection approaches to enhance insight and understanding of the NHS England Youth Forum, including its role, value and potential effects. Method A qualitative evaluation research approach was used. Two focus groups were conducted: one with five young people from the NHS England Youth Forum and another with five members of the Adult Reference Group that supports the forum's work. Individual semi-structured interviews were undertaken with four employees of NHS England and the British Youth Council who had a central role in the development and implementation of the forum. Findings The members of the NHS England Youth Forum were participating in an extensive range of activities, and their work is having a direct and positive influence on the provision of healthcare services. The day-to-day management of the forum, in terms of personnel, time and commitment, should be acknowledged. Conclusion Young people are not only highly capable of participating in decision making related to healthcare, but also want to be involved and value the opportunity.