Understanding and improving person centred care for children and young people

Amy Tallett, Head of Research, Picker Institute Europe

Children’s health and social care is in demand with the NHS long term plan1 outlining that 7 million children in England have longstanding illnesses, including asthma, epilepsy and diabetes. In June 2024 there were 283,400 children and young people on community services waiting lists2, and there are rapidly growing waiting lists for ADHD and autism assessments3. With many children waiting too long to access the support they need, young people and their families are feeling the impact. 

To understand the impact of waiting and of other experiences on the healthcare journey, we must seek to explore the perspectives of children and young people. Only by listening to children and young people can we identify areas of good practice as well as where care quality could be improved.

One way we do that at Picker is by using surveys to gather feedback. We have developed national survey programmes in England to gather feedback about care experiences of children and their parents or carers, including the Under 16 Cancer Patient Experience Survey on behalf of NHS England and The Children and Young People’s Patient Experience Survey on behalf of the Care Quality Commission. And outside of such programmes, we have designed a range of toolkits for listening to children including those with sickle cell disease and allergies.

The detailed insight from these surveys starts to paint a picture of care quality at a local, system and national level. For example, in the latest Under 16 Cancer Patient Experience results published in November 2023, only 73% of children reported that they could always understand what staff were saying, and 57% of parents or carers and children said they were not told different things by different members of staff that left them feeling confused. These findings represent gaps in care provision and highlight where improvements can be made to communication and involvement to make care more person centred. 

Our robust approach to designing, testing, and improving such surveys provides confidence that they focus on what is important to children and young people and that they can deliver actionable insights for quality improvement. Importantly, the development of each of our surveys has extensive input from children, young people and their parents or carers to inform survey design, methodology and outputs. Consultation with wider stakeholders such as clinicians and charity representatives ensures that our surveys have benefits for many.

At Picker, we recognise that existing literature and qualitative research (such as interviews or group discussions) should be used to identify what is important to children and their parents or carers in care provision, to inform what questions are included in a survey. Cognitive interviewing enables survey design and wording to be tested, to ensure people interpret questions as intended. This is particularly important for children who might interpret questions differently to researchers. Finally, a pilot should trial the data collection methods, considering any preferences and accessibility requirements.

Our experience also means that we understand various considerations that arise when seeking feedback from children. These include how to handle ethical considerations such as processes around consent and opportunity to opt out, designing accessible materials that account for variations in development and communication abilities, and ensuring that parents or carers are also given the opportunity to feedback (acknowledging that there might be differences between parents/carers and children in the things that matter most)

High quality care can only be achieved by understanding and improving experiences of care services. The UN rights of the child outlines that children have the right to be heard and to good quality healthcare. Our surveys, designed to be accessible and engaging, provide a means of effectively listening to children and young people. The resulting survey data can and should be used when planning services and improvement initiatives to ensure they are centred on the needs and preferences of the patient population.

Want to learn more about our survey development process? Download our briefing detailing the validation and reliability of Picker surveys.

Picker’s team of researchers and data scientists are available to support organisations in understanding, measuring, and improving patient experience. For queries about our services or to request a call, please contact info@pickereurope.ac.uk.  

References

• 1 NHS England. NHS Long Term Plan – A strong start in life for children and young people.
• 2 NHS England. NHS Activity Tracker 2024/25.
• 3 Nuffield Trust (April 2024). The rapidly growing waiting lists for autism and ADHD assessments.