An authentic voice at every stage is key to producing meaningful Health Information for Children and Young People, according to expert speakers at PIF’s recent event.

Common themes on substantive engagement with children and young people emerged from projects working to improve health information across the country.

Key messages from presentations and delegate feedback included:

  • Ask don’t assume – find out what information children want and how they want it presented 
  • Don’t try to be cool
  • Think about different ways to reach young people, their parents and siblings
  • Seek genuine, critical feedback on projects rather than just looking for a rubber stamp
  • Remember children can be affected by adult diagnoses as well
  • There’s no one-size-fits-all approach, every child is different
  • Health professionals must take the time to talk through treatment 
  • Ask what matters most to children and young people, issues with school and appointment preparation were a recurring theme.

Introducing the event, Kath Evans, director of children’s nursing at Barts Health NHS Trust, said: “I’m passionate about improving involvement of children and young people in their health care because I think that is the magic that gives us good outcomes.

“Children and young people tell us repeatedly that they want to be involved in their care, they want to be involved in decision making.”

Meeting health information needs while tackling potentially taboo topics

Nick Posford, chief executive officer of CICRA, spoke about how the charity transformed the way it developed and delivered its health information while speaking about potentially taboo topics.

A survey of children and young people with IBD revealed the single most important service was reading information booklets – 87 per cent of respondents.

However, CICRA’s existing information was text heavy and even when it featured young people’s voices it didn’t reflect their desire to help others with the condition.

As a result of the consultation, CICRA produced new resources, including information for schools and colleges, Can’t Wait cards to gain toilet access and a symptom impact tracker to help young people prepare to move to adult services.

Nick was joined by 11-year-old Aisha Jesani, who was diagnosed with Crohn’s disease when she was two, and her mum Bina during his presentation.

Bina, who found out about CICRA through another mum, described Aisha’s initial diagnosis as feeling like it was ‘all being done to us’.

She said healthcare professionals need to take the time to explain a care pathway rather than just ‘throwing information’ about a diagnosis at families.

However, Bina acknowledged there was no ‘one-size-fits-all approach’.

“You will have one child that really wants to be involved in their care plan and another who doesn’t want anything to do with it.”

Having started secondary school this year, Aisha said she wanted to tell her new classmates about her condition.

“At the beginning of the year we had to do a project and it was all about me, so I put my CD there because I’d rather them know than just keep asking me why I’m not well,” she said.

Bina also spoke about the importance of having information targeted at the whole family rather than just the young person with a condition.

“Aisha’s the one with Crohn’s but as a family we have all had to pull together and rearrange,” she said.

Thinking like a child

Kaye Stevens, care information manager at Motor Neurone Disease (MND) Association, spoke about MND Buddies – a new online activity hub for four to 10 year olds who are close to someone with MND.

The resource was developed after parents and carers raised concerns about how their children were coping.

One service user said: “My greatest fear is not that I’m dying, it is the welfare of my boys and how my family will cope.”

Children and young people who were consulted said they wanted to be children first – not just carers or the children of parents with MND – and the earlier support could be provided the better.

They wanted the chance to make memories but also to give back through volunteering and fundraising – something which came as a surprise to researchers who traditionally hadn’t wanted to burden them.

MND Buddies includes diverse family stories, which are also available in hard copy, and activities designed to help young children begin to understand and adjust to the changes that MND brings.

Previously, the association sent out around 400 workbooks a year for children.

In the first month, the online storybook ‘Why are things changing?’ had 360 views.

The MND Buddies page had 6,765 views.

“That awareness of what our families are going through is something you don’t get from print alone,” she said.

Kaye spoke about the obstacles to creating the resource, which significantly evolved throughout its development.

They included resources and time, money and unexpected hurdles such as design glitches.

These were overcome in a variety of ways, including cross-team work and employing expert support where needed.

Kaye also emphasised the importance of truly engaging with users at every stage of development.

“There is no point in asking users to be involved if you are just looking for a tick, you want them to find issues,” she said.

Involving children and young people in developing information and resources

Lucy Bray, professor of child health literacy at Edge Hill University, spoke about three different projects – Children Coming to Hospital, Xploro and Coming to Spinal Clinic.

All involved children and young people in different ways.

Children Coming to Hospital focused on children going to hospital for procedures such as X-rays, blood tests and surgery.

To explore what support children wanted, participatory drama workshops were held with children aged six to 14 who had some experience of hospitals.

They were invited to act out different roles and scenarios and facilitators could ‘freeze frame’ and ask them to explain why they were behaving in a certain way.

As a result of the workshops three types of resource were developed: an animation and comic strip for children, a leaflet for parents and an animation for health professionals.

Dom Raban created the Xploro digital therapeutic platform in response to his own daughter’s diagnosis and treatment being overshadowed by a lack of information.

He wanted to check the format and content was suitable, specifically a chatbot providing answers to children’s questions about procedures, treatments and hospitals.

Consultation included write-and-tell interviews with children and picture-guided interviews.

“The children are so creative and so amazing, the ideas they come up with are far better than anything we could come up with,” said Lucy.

The chatbot now includes 700 questions from children with answers written by play specialists and children’s authors.

“All the information that went in there was what children wanted, not what academics, or health professionals or their parents wanted,” said Lucy.

Xploro has since been shown to reduce fear and anxiety in children and their parents around hospital visits.

Coming to Spinal Clinic was introduced after young people with scoliosis indicated there was a need for a resource to help them when they attend a spinal clinic.

Separate activity-based workshops were held with young people with experience of scoliosis and their parents. 

A key finding was that young people still wanted printed information which they could take along to appointments to give them authority.

“Don’t assume they will want an animation, a video, a game until you ask them,” said Lucy.

They also wanted it to be clear the information had come from other young people, not just health professionals, and advised healthcare professionals not to ‘try to be cool’.

Lucy emphasised the importance of always being prepared to change plans when developing a new resource.

“If you stick to something that’s not right it is never going to be used by children and young people.”

Improving experience through film

Kate Begley, clinical physiologist at Evelina London Children’s Hospital, Nicki Bickford, patient information manager at Guy’s and St Thomas’ NHS Foundation Trust and Eleanor Stanley, writer and director of Stories for Health, gave a joint presentation on two new films.

The first, Having an EEG at London Evelina Children’s Hospital, was aimed at children.

The second, Home video EEG telemetry at London Evelina Children’s Hospital, demonstrated how home video telemetry tests work for parents.

Kate said the first video had helped children become more relaxed when attending EEG appointments.

The second helped decrease technical issues. Getting it right first time meant children didn’t have to go through unnecessary procedures.

At the end of the talk Eleanor revealed how she switched from being a producer to a service user when her son was referred for an EEG.

“I have always pushed the human-interest element but this time I did realise the technical element was really important too,” she said.

Service evaluation in a research project

Tara Shea from Barts Health NHS Trust spoke about the development of new resources to support children who had an enucleation (removal of the eye) procedure.

Previously, parents and children were unwilling to share problems they were having with removal of the artificial eye leading to unnecessary anaesthetics and symptoms of post traumatic stress disorder in the children.

When families were encouraged to share their experiences several issues became apparent, including compliance with the artificial eye, school issues, fear and a lack of peer support.

However, there was very little existing literature on the psychosocial impact of having enucleation and no available best practice guidelines.

A service evaluation found 100% of respondents felt they would benefit from support around artificial eyes and 73% of children didn’t have information they could give to their school.

As a result of the evaluation, several new resources were created including support phone calls, children’s preparation books, a video demonstrating how to remove an artificial eye and a school information pack.

An Eye Club was founded allowing children to socialise and teach each other about eye removal and care. 

To continue to develop resources, a qualitative participatory action research project was created looking at both parent and child perspectives.

It found once a child has an enucleation the family unit continue to require support, specialist resources and individualised care.

As a result, the team now hope to publish the first retinoblastoma article based around the psychosocial aspects of having an artificial eye.