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Diabetes care tool puts kids in control

The nursing team in the children’s diabetes service at Pennine Care NHS Foundation Trust has developed an app and website to help children and young people with type 1 diabetes manage the condition. The initiative focuses on using social media to increase peer support. The team were runners up in the 2015 Nursing Standard Excellence in Diabetes Specialist Nursing Award, sponsored by Sanofi Diabetes.

Specialist nurse Claire O’Connor says the app and website will help young people become independent in manging their type 1 diabetes

Picture credit: John Houlihan

A website and app developed by a team of nurses is helping to put children with type 1 diabetes firmly in control of their own care.

Sugar3 aims to support self-care and decision making and in turn reduce long-term complications, as well as promote independence and create a network to reduce isolation for young people with diabetes.

Children’s diabetes specialist nurse Claire O’Connor and her team of five at Pennine Care NHS Foundation Trust (PCNFT) have been developing Sugar3 since last September, working closely with the children and young people who will use it.

Type 1 diabetes is not preventable and can have life-threatening consequences if not managed properly. In March, the latest National Paediatric Diabetes Audit report showed a worryingly high number of young people aged 12 and over with the disease had early signs of potentially serious complications.

More than 27% had high blood pressure, around 7% had excess protein in their urine, indicating a high risk of kidney disease, and more than 14% had early signs of eye disease, putting them at risk of future blindness.

Ms O’Connor and her team were concerned that education for young people with diabetes, where it existed, was ad hoc. Parents, carers and staff felt it omitted some key areas and that delivery did not meet children’s needs.

The team realised that the best way to deliver this education to young people was through their phones and the internet.

‘It is difficult to get young people away from their phones,’ says Ms O’Connor. ‘In clinic they are always absorbed in them. And they expect to be able to access information straightaway. It is part of our culture – especially for young people.’

Sugar3 has three interfaces covering the age groups six to ten, 11 to 14 and 15-plus years, to ensure the educational materials match the children’s needs and the resource grows with them.

‘It is important to tailor it to the different ages and development stages,’ says Ms O’Connor. ‘The younger ones’ education is in the form of animations, whereas the sections for older children are more structured.’

Children are registered with their nurse on the website and app and then can use both securely. Modules include stress management and emotional wellbeing, as well as more clinical aspects of their condition.

There is a personalised dashboard, so children can track their learning and reports can be sent to their nurse. Ms O’Connor says this is a vital part of ensuring that young people understand the different aspects of their condition and how to manage them.

‘It is going to make a real difference to our follow-up consultations,’ she says. ‘After completing a module, there is a short self-assessment that the child or young person completes, which looks at what they know and have picked up from the education. If they have not understood something properly we can address it the next time we see them.’

As part of the project, a face-to-face education programme developed with the Queen’s Nursing Institute will be rolled out. Children can refer to Sugar3 afterwards. ‘For example, a teenager might be planning to go out drinking with his mates and he can check how to manage that on his phone,’ says Ms O’Connor.

And it is not just educational: Sugar3 gives children and young people some control over their care. They can have consultations via Skype, request appointments and use email for questions and support. Ms O’Connor says Skype offers a modern way of supporting self-care and putting young people in control – which is what Sugar3 is all about.

‘It is essential to promote their independence and autonomy. Young people are faced with many challenges as they grow older and adding diabetes can magnify these challenges. This website will help them make effective decisions around their care and management, with real-time access to the facts.’

Our online diabetes community can be a great support for young people

She adds that diabetes can be particularly stressful around adolescence. ‘If children were diagnosed early, their mum and dad will have always been there managing the diabetes, and the young person will have got used to that. But there comes a point where they become more independent.’

Sugar3 also recognises how young people use social media to access support as well as information. Having diabetes can be isolating – many children find they are the only person in their school with type 1.

‘Our online diabetes community can be a great avenue for children, young people and families to link with others with for support,’ says Ms O’Connor. ‘The website will have a section signposting to chat forums. We also encourage peer support by ensuring face-to-face sessions are fun, interactive and age-banded, enabling patients to meet others of the same age.’

At every stage, Sugar3 has been co-designed with children and their parents, making them equal partners in decision making, to ensure that the site and app will work for them (see box, page 20). Children and parents are on the steering group and provide regular feedback to the project team.

‘Children can connect and share experiences’

Lucy’s youngest son Luke, who is nearly seven years old, was diagnosed with type 1 diabetes aged three. She has been participating in the development of the Sugar3 website and app to help children and young people manage their condition.

‘I was involved from the beginning, the first meeting, when ideas were being thrown around,’ she says. ‘It gave me a chance to speak on behalf of Luke, to explain what he enjoys, what he doesn’t like, what he needs help with in terms of his diabetes and also what would have been useful if it had been available when Luke was first diagnosed.

‘Luke is very much into apps and computers and I discussed the concept with him and things he would like or dislike.

‘I have also attended meetings about the content of the website and app. I really like how the app grows with the child, that the content is age appropriate and they can move through the levels. And not only is the app current and accessible, it is also informative.

‘When you are living with a chronic condition there is no escaping it. There is no point pretending it is not there and just getting on as normal. You have to arm yourself with knowledge and face up to it.

‘The app has the ability to get us all talking about diabetes within the family, but it also gives Luke a place to go and have any worries or concerns he might have answered.

‘The peer support is invaluable. Luke is the only child in his school with type 1 diabetes and I can only imagine that at times this is isolating and frustrating. Children can now connect and share experiences, which I hope will help them see that they are not alone.

‘In our experience, health professionals spend a lot of their time worrying about what the numbers say. I worry about this too, but I also worry about the psychological impact a chronic condition will have on Luke.

‘I believe that the app is a step closer to really connecting with young people, not only on an educational level but on a psychological level too. That can only be a good thing.’

The team engaged parents via social media. ‘Before the project got under way we were raising awareness through a local patient support group on Facebook. We posted a message inviting parents to get involved and give their opinions about what was needed.’

There were challenges along the way. For example, in the care of children with diabetes there is never just one organisation involved: building strong partnerships across the acute and community trusts, community groups and family groups was crucial.

‘We are a complex team split over two providers, with their different policies and procedures,’ says Ms O’Connor. ‘But all the diabetes nurses in each area have come together to compile the information and contribute different materials.’

It is still early days, but PCNFT executive director of nursing and allied health professionals Ian Trodden has no doubt the initiative will make a real difference to patients.

‘The team has used its experience and knowledge, coupled with feedback from service users, to develop a truly innovative solution to supporting children and young people with type 1 diabetes,’ he says. ‘This is a real example of clinical excellence and innovation that will enhance the fantastic care and support already delivered by the team.’

Awards recognition

The team was runner up in the Excellence in Diabetes Specialist Nursing category of this year’s Nursing Standard Nurse Awards, sponsored by Sanofi Diabetes.

Specialist judge Grace Vanterpool, diabetes nurse consultant at London Northwest Healthcare NHS Trust, praised the team’s holistic approach, adding: ‘They are ticking all the boxes of keeping people out of hospital and reducing short and long-term complications by improving self-care and management.’

The judges also praised the way the team had ensured children and young people were involved all the way through the development of the website and app.

Steve Jamieson, then RCN head of nursing, said: ‘Kids use their phones all the time so this is the right way to get through to them. This team is enthusiastic, motivated and excited about their project and what it could achieve.’

The launch of the app and website is just the beginning of the team’s work. Ms O’Connor says they want to carry on improving the site and adding information ‘so it is the best that it can be’.

Ms O’Connor (right) and team member Kirstin Williams demonstrate the new app with the help of a young patient

Picture credit: John Houlihan

She adds: ‘We want it to improve the self-care and decision making of young people with type 1 diabetes. It can have a massive emotional impact as care and management has to be considered every day.

‘They have to make so many decisions daily and we want to help them make sound decisions, based on evidence.

‘If they can make the right choices it will make their life easier. What we are really trying to do, and will continue to do, is to improve the quality of life of these children and young people’.

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