User involvement can change the future for young diabetics

Donni Fabila Nørgaard and Annemette Clement are writing their master thesis on telemedicine for young diabetics at the Department of Computer Science at Aarhus University. The two students focus on a social issue that is highly relevant: It can help change the future for many young diabetics.

 

Their motivation for writing their thesis on telemedicine for diabetics is partly that Annemette’s younger brother is diagnosed with diabetes.  As Annemette has a personal experience with the disease, she is therefore naturally keen on her younger brother getting the best chances of taking care of himself as he grows older. One of Donni’s friends has diabetes as well, which motivates them both to help someone close to them and to help others at the same time.

 

- There were lots of subjects we could have chosen for our thesis, but our personal relationship with the topic came into play. We try to help people with their diabetes, says Annemette.

 

Take care of young diabetics

According to the two students, there are more and more challenges for teenagers who do not quite know how to manage their diabetes on their own. Thus, the focus of the thesis is young diabetics over 18 years who have too high blood sugar.

 

- We have previously attended a course that focused on what to do for these young diabetics, and we found the subject interesting, says Annemette.

 

We are talking about the transition from the pediatric department to the adult department, which can be a difficult shift for many young diabetics. At this point, the parents do not actually participate anymore. Parents have often helped control and manage their child’s diabetes during their entire life. Subsequently, as an 18-year old, one suddenly faces the responsibility of having to manage the diabetes all alone.

 

- It is a bit like jumping out of an abyss, where you have to jump between two rocks. One must be careful not to fall into the hole between the rocks, says Annemette.

 

Dealing with diabetes by means of IT

Besides this transition, Donni and Annemette also talk about the fact that some young people over 18 years often begin to study in a new and unfamiliar city. Perhaps they are not used to controlling their own diabetes, and while they are studying, many unfamiliar things happen at once: new education, new hobbies and maybe a new city.

 

- So many unfamiliar and new things at the same time can be difficult to handle. Therefore, we believe this may one of the reasons for the high number of diabetics. The young people suddenly face the responsibility all on their own, says Donni.

 

According to Annemette, several studies show that the transition between the pediatric and the adult department is difficult.

 

- We want to do something that can help solve this issue. We use IT in an attempt to get the young diabetics to better manage their diabetes on their own, says Annemette.

 

User involvement is crucial

Overall, the goal is to help the young people with the transition from childhood to adulthood by providing them with a tool that creates an overview of how everyday activities affect their blood sugar and general health. Donni and Annemette try to introduce it at an ealy stage before the transition occurs.

 

- We believe that yet another unfamiliar thing on top of everything else can be too much to handle. Therefore, there must be something familiar for them, and this is why they need to be accustomed to using the app we are developing, says Donni.

 

The two students have contacted the younger diabetics, starting as young as 12 years of age and up to 26 years. They attempt to involve them by means of workshops and interviews, given that the young people themselves know best what they want. User involvement is a crucial part of the process.

 

- Our major focus is on the users’ own proposals. They must help us figure out what really needs to be done. They might need something completely different. One thing is to develop something that works for them, another thing is how to actually involve these young people in such a scenario, says Annemette.

 

Physical activity affects blood sugar

The thesis is based on some of the activities that the young people do in their daily lives. This could for example be physical activities, such as running. In this way, the researchers try to provide the young diabetics with an overview of what it will mean for their blood sugar to go for a run.

 

- Running basically resembles taking insulin. However, it depends, of course, on the length of the run as well as on how much lactic acid is produced. The more psychical activity you perform, the more your blood sugar will fall, says Donni.

 

The young diabetics measure their blood sugar and enter the result into an app, which will enable them to see what happens with the blood sugar. In this way, they gain an understanding of what and how your blood sugar gets affected. To run a certain distance can cause the blood sugar to fall, and vice versa. 

 

- In this way, they can learn to understand whether they should take more or less insulin so that blood sugar levels do not fluctuate dramatically, says Annemette.

 

Not just psychical activities are to be entered into the app. Food intake should also be entered in terms of total volume, number of carbohydrates, as well as which type of insulin – short or long-term, and how much alcohol they have consumed.

 

- In an ideal world, young people should not enter much into the app, given that everything should be done automatically. However, at the present time we are not capable of doing this automatically yet, says Donni.

 

Alcohol and diabetes are a dangerous cocktail

It can be challenging for young diabetics to go out and consume alcohol. Drinking can be a great mix of carbohydrates and insulin, and according to the two students, alcohol can act like insulin.

 

One scenario is that you drink a sugary drink containing both alcohol and soda. This mixture causes the sugar from the soda to quickly be absorbed, and the blood sugar suddenly rises. However, the blood sugar then drops immediately when the alcohol hits.

 

- It is a dangerous situation for diabetics, given that they cannot figure out how much the glucose levels can and will drop. Therefore, we try to provide them with the tools to understand the consequences of their actions in connection with their disease, says Donni.

 

Thus, it is essential to make the young diabetics understand how different things in their everyday lives affect them.

 

The problem must be addressed

According to the two students, there is much more to be investigated in this area, especially as we see an increasing number of diabetic cases.

 

- The number of people with diabetics has doubled within the last ten years. This really calls for research, says Annemette.

 

In general, a lot is happening within research, development and telemedicine. Annemette talks about another similar project in Copenhagen, which is about sharing knowledge on diabetes. The person behind the project has been in contact with Annemette and Donni at various workshops.

 

The two students reflect on the possibility of working further with the subject if it holds more potential. If they do not get the opportunity to work with the subject, they both hope that others will deal with the problem.

 

- There is definitely a need for doing something, but our main focus right now is our thesis. However, there are ample opportunities in the context of this project, and we do not feel pressured in any way, says Donni.

 

However, little is being done within this area at the moment, and according to the two students, there may be job opportunities in different companies operating in the field.

 

They have not yet decided whether to write a PhD on the subject.

 

- We cannot quite dismiss the idea of writing a PhD. We could easily go further with this project, especially given the many technical things to be made. We cannot do all of it in the thesis, so unfortunately we have to delimit the subject, they say.

 

Specialist knowledge next door

Donni and Annemette are both very pleased to write their thesis at the centre, for several reasons:

 

- The guidance is excellent, and our weekly guidance is always up-to-date. We are also quite fortunate that our supervisor is located in the same section as us. This means that we can go over there any time if we have questions, and he stops by almost every day, according to the two students.

 

They are very satisfied with their supervisor, Professor Morten Kyng. He has assisted them throughout the whole process.

 

- Morten supports us a lot, and he makes it possible for us to do a lot of things. He has been a great support by telling us what to do, what to keep an eye on as well as to tell us whether something is suitable or not, says Annemette.

 

The two students have previously worked together with him in another project, and therefore they agreed that he should be their thesis supervisor.

 

- The collaboration with him in a previous project appealed to us, as it worked very well with him as our supervisor. We enjoyed working with him, and both in the thesis as well as in the previous project he has helped us to be rigorous in our planning, says Annemette.

 

Support and advice

The two students will not run short of equipment. According to Annemette, it is possible to acquire what is needed..

 

- They do not restrict us in our work – on the contrary, they help and encourage us instead. Therefore, we have ample opportunity to do different things. The support and the unlimited possibilities motivate us a lot, Annemette says.

 

It is not only in terms of resources and equipment that the centre is considered to be a suitable place for writing a thesis. It is also about the people and the social aspect.

 

-We have received support from anthropologist, Sarah Maria Rasch, who provided us with good guidance. We have also spoken with other people here, especially if they use the same technology as us, which has helped us a lot. People are generally very welcoming and helpful, says Donni.

 

People in the thesis environment all contribute to creating a comfortable atmosphere, and it is simply an advantage for the two students to be surrounded by so many specialists..

 

- The people here are all very experienced within the area that we work with in the thesis and provide us with inspiring feedback and guidance. The support here is generally very encouraging, they say.