Parental feedback has long shaped NHS care, but until recently there has been little evidence gathered about patient experiences through the eyes of children. But as Bridget Hopwood and Sarah-Ann Burger write, change is under way

Bridget hopwood

Bridget Hopwood

Bridget Hopwood

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.

Sarah ann burger

Sarah Ann Burger

Sarah-Ann Burger

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.

Case Study: Meningitis Now

In 2013, Meningitis Now worked with the Picker Institute to conduct an online survey of young people’s (aged 14-24 years old) experience of meningitis and septicaemia, in particular the support they received afterwards.

The results indicated that almost a third of the respondents had received no information about meningitis and its possible after effects.

The organisation has since expanded its small but existing group of Young Ambassadors: young people who have either had meningitis themselves, or been affected when a close friend or family member had the disease.

Their role is not only to support each other, but to raise awareness about the disease and encourage other young people who have been affected to come to the charity for information and support.

The survey also showed that more than 40 per cent of young people affected by meningitis wanted to meet others who had been in a similar situation.

To support this need, Meningitis Now holds “Believe and Achieve” weekends, which enable young people and their families to meet, share and bond over experiences and the challenging activities offered during the weekend.

Case Study: Sheffield Children’s Hospital

Since 2009, when Sheffield Children’s Foundation Trust first ran its paediatric inpatient survey, the trust has actively committed to improving CYP care experiences, shaping service developments and general strategy around this valuable feedback.

Having run the survey annually for the past seven years, the staff take a transparent approach to sharing the findings and distribute the survey’s results widely within the trust, so that key staff are consistently informed.

This approach has led to a year-on-year improvement in key areas such as communication. For example, in 2013, 44 per cent of patients felt that “staff did not fully explain how their operation had gone”. In 2014, this dropped to 33 per cent.

The survey feedback has been key to this improvement and to supporting the following care improvements at the trust:

  • Any leaflet describing a procedure that needed consent had details of benefits and risks associated with it.
  • Reorganising the pre-operative pathway to: (i) ensure consistency of preparation for surgery; (ii) simplify the timely location of patients for anaesthetists and surgeons; and (iii) ensure that nursing staff specialised in informing and relaxing pre-op families without the distraction of other ward priorities.
  • Setting up a video walk-through journey on the hospital website for families to watch and discuss before they visited the hospital.
  • Introducing pagers to ensure that parents were able to be with their child as soon as possible post operatively. Survey feedback has shown that the reassurance and interpretation of a parent in dealing with questions and worries is worth more to a child than anything that clinicians can do.
  • Employing an experienced patient advice and liaison services officer who is able to devote time to more anxious families and prepare them for admission.

Furthermore, the number of young people reporting that they did not feel involved in their care improved fell from 66 per cent in 2013, to only 31 per cent in 2014. This followed the development of a contract of care for children and parents, as well as a named nurse initiative to include parents in care planning.

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