Exploring a child’s-eye view of NHS healthcare

Patients’ experiences of NHS care are considered one of the central components of healthcare quality, along with patient safety and clinical effectiveness. Yet, until recently, most attempts at collecting feedback about children’s care have either been given from their parents’ perspective, or have been conducted on a small scale and in silos.

Though parental feedback adds value, there has been little national evidence about care experiences through children’s own eyes.

National versus trust

The need to actively seek out children’s and young people’s (CYP) experiences has been well documented in recent reports such as the National Children’s Bureau Listening to Children’s Views on Health Services, and the Patient Experience Network’s Improving Patient Experience for Children and Young People.

More specifically, the 2012 Children and Young People’s Health Outcomes Forum recommended that the NHS patient survey programme should incorporate the views of patients under 16 by 2014.

Until recently, knowledge of CYP care experiences on a national scale has been sparse.

Between these national surveys, a number of tools and initiatives have been developed to shed light on children’s and young people’s experiences at a local level.

This work conducted by Picker Institute Europe and others has supported valuable, trust level improvement. In many cases, such as at Sheffield Children’s NHS Foundation Trust, survey data has been used to co-design services with children and young people.

Concerns highlighted in the survey, such as sign-posting parking, disabled access, privacy and dignity needs on wards have informed their design.

The right questions

Equally, detail gained about parent accommodation needs has been factored into ward design, and resulted in the Sick Children’s Trust providing dedicated accommodation for critical care families.

For the past eight years, The Picker Institute children and young people team have been working to develop and implement a suite of children’s survey tools, including an inpatient and day case experience tool, which the Care Quality Commission adapted to use as part of the national survey programme in 2014.

It is vital to engage directly with children and young people, and understand what is most important to them. This involves conducting qualitative research with children and their parents. The two perspectives are essential in gathering the indepth information required to identify and clarify underlying attitudes and experiences, and more crucially, the key differences – if any, between them.

Car parking, while a source of frustration for parents, was not something that the children had a strong view on

For example, children found it difficult to recall detailed information about their admission to hospital, as they felt this was something that was more relevant to their parents. These questions were therefore incorporated into a parent specific section within the children’s questionnaire.

Similarly for the outpatient survey, car parking, while a source of frustration for parents, was not something that the children had a strong view on. By contrast, they had a lot to say about entertainment facilities in the waiting area. These and other distinct differences justify the need to ask parents and children different sets of questions.

The experience of a young patient will vary depending on the type of care episode.

For young inpatients, priorities are centred around practical care, emotional support and comfort. It is a longer experience, and can be quite daunting, so comfort and security are of prime importance. By contrast, outpatients tend to focus more on building doctor-patient relationships.

Therefore, involvement in care decisions and explanations around such decisions, were of a higher priority.

For those visiting an urgent care setting, being involved in their care is generally of less importance with greater emphasis on “get me better quickly”, “get me home”, and, in terms of reassurance: “tell me it is all going to be ok”.

Testing matters

Cognitive testing ensures a tool is fit for purpose, user friendly, and yields accurate data. Testing of our CYP surveys resulted in the introduction of colourful illustrations and shortened text to make it more engaging and accessible.

The length, wording and/or response options to some questions were also amended, with multi-faceted questions considered overwhelming, and removed entirely.

Seeing their feedback go from being shared to heard and finally actioned gives a sense of empowerment, especially to children.

Seeing their feedback go from being shared to heard and finally actioned gives a sense of empowerment

To be effective, CYP service improvements work best when co-designed with the service user at each stage of development. Advisory groups support this involvement and robust, appropriate, well designed tools offer a solid starting point and evidence for service improvements.

Though quality patient experience should be a priority, it is not the only goal, and should be thought of more as the starting point to care improvement, than the finish line.

Quality patient experience provision should be embedded into the culture and day-to-day routine of any care provider.

In addition to driving national healthcare developments, feedback can also support local change, and third sector stakeholder engagement.

Bridget Hopwood is director of Health Experiences and Sarah-Ann Burger is senior project manager at Picker Institute Europe.