I am really pleased that Information avoidance by younger adults with Type 1 diabetes: a preliminary empirical study has now been published. Here is the full reference:

Ryan, B., & Webster, G. (2024). Information avoidance by younger adults with Type 1 diabetes: a preliminary empirical study. Information Research an International Electronic Journal, 29(3), 56–73. https://doi.org/10.47989/ir293701

The original inspiration for the research in this paper was my attendance of a presentation by Professor Gunilla Widén where she mentioned information avoidance. This struck a couple of chords with me: firstly, as a fledgling information scientist, the idea of avoiding information seemed puzzling. However, the second chord was my realisation that, for my own type 1 diabetes, information avoidance is exactly what I do!

From that, I hoped that research into information avoidance could help with the massive human and financial costs of diabetes and possibly other chronic, self-managed healthcare conditions. Thanks to a small grant from Edinburgh Napier University, Dr Gemma Webster and I undertook a short project focussing on 5 research questions below:

During the literature review for the project, we realised that there is a gap in studies of information use and avoidance around Type 1 diabetes: much research focuses on type 2 diabetes, presumably because this type is more prevalent, or mixes diabetes with other conditions which may not require as much self-management as type 1 diabetes does.*

1. What types of information about diabetes are avoided and used?
2. Why may people avoid data and information about their diabetes?
3. Which diabetes information-channels are avoided and used?
4. How can digital diabetes information-channels be improved to get higher uptake?
5. How did adolescence affect adults’ past diabetes-related information behaviour?

The first three clearly focussed on understanding information-avoidance in diabetes. The fourth came from our desire, as researchers into how IT is used, to look for better ways to implement diabetes-related IT. The final question came from learning that adolescence can be a terrible time for people with diabetes.**

Our basic answers are in the abstract:

Younger adults with Type 1 diabetes may only collect blood glucose data, disregarding other relevant data and information. They may also take ‘time off’ from collection, and not gather information about potential complications. Some desire more contact with healthcare professionals. Adolescence may involve significant avoidance of data and information.

Observed behaviours speak to ‘utility’ and ‘hedonic drives’. Long gaps between healthcare appointments may exacerbate avoidance, as well as limiting healthcare professionals’ opportunities to advise patients. Younger adults with Type 1 diabetes avoid data and information unless they believe these are needed. Frequency of appointments and routes to information could be improved.

As we undertook the project, we shared our interview schedules with by Gunilla and Professor Kristina Eriksson-Backa. They used these to undertake a small study of their own in Finland, as reported here.

Gemma’s and my paper has just been published in Information Research. I’m very happy that our contribution is truly available to all:

Information Research is the only fully open access journal in Information Science. Readers have always enjoyed free access to journal content. Authors have always published through the journal without fees to offer their articles as open access.

Professor Crystal Fulton, Editor in Chief
https://informationr.net/infres/article/view/937/439

Since submitting the publication, I have been working to assemble an international team to further understand the scale of diabetes-related information avoidance, differences between countries and how these relate to different healthcare systems and above all, any interventions that might help reduce the impact of diabetes-related information avoidance. There’s nothing to report yet, but watch this space!

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* Type 1 diabetics generally have to calculate their own insulin doses from the amount of carbohydrate they eat, maybe adjusting for what type of food it’s in, exercise, ketone levels, sickness. (For example, I find that vegan bean soup sends me high very quickly, but I then crash in the middle of the night unless I cut my insulin does right down. If I’m ill, my blood-glucose level is significantly raised.)

** I was diagnosed when I was 40, so didn’t go through this, but I shudder to think what diabetes would have added to my adolescence. It wasn’t pleasant for anyone.