The healthcare system can be intimidating to younger patients, and poor experiences may lead to anxiety around engaging with the system later in life and poorer health outcomes. This new guideline aims to improve the healthcare experience of babies, children, and young people (aged up to 18 years) with the hope that this can improve their health outcomes and wellbeing.
The guideline published today (25 August) emphasises the need to provide children and young people with clear and accurate information which can be tailored to an individual patient’s level of maturity and understanding. Information materials should be developed in partnership with young people and presented in a range of formats using words and images.
The guideline also recommends that young people and their carers should be warned that some medical information available online may be inaccurate. They should be advised where they can access additional sources of information about their care or condition that is accurate, credible, and evidence-based.
The recommendations also state that children and young people should be involved in shared decision making over their care, and should fully understand their rights and responsibilities about privacy, confidentiality and when consenting to treatment. Conversations should be two-way and appointments may need to be lengthened to provide the time to do this.
Dr Paul Chrisp, director of the Centre for Guidelines at NICE, said: “Younger patients have historically been seen as more ‘passive’ recipients of healthcare than adults, but supporting them to truly understand their condition and treatment can help them to feel more confident engaging with healthcare staff. This is the first guideline we’ve published that specifically addresses the experiences of patients aged under 18. We hope that it will provide healthcare staff with clear advice on how to engage effectively with younger patients.
“Children and young people’s healthcare experience is just as important as the experience of adults, and we’re very pleased that this guideline has been developed with input from children and young people. We wish to thank the members of committee, particularly those representing the voices of young people, for their hard work in developing this guideline.”
The guideline recognises the important role parents, carers, and advocates play in ensuring younger patients feel supported during appointments, although patients should be offered the opportunity to speak to a healthcare professional in private where appropriate in line with current practice.
The guideline can be read here.
Aishah Farooq, a lay member of the guideline committee, has written a blog ‘Hearing the voices of young patients’ The blog can be read here.