Introduction to this Emerging Minds funded project by Lead Researcher, Dr Emma Berry, Queen’s University Belfast:
What the project is about…
This project is led by a team of diabetes researchers and clinicians at Queen’s University Belfast, Steno Diabetes Centre Copenhagen, and NUI Galway. The aim of the project is to get a better understanding of young people with Type 1 diabetes’ experiences of social media and to explore the helpful and less helpful aspects of this online world. Ultimately, we want to gather information to support the safety of young people with T1D online and to build resilience to deal with hurtful or unpleasant social media content. This topic has never been more important, considering the upsurge in social media use due to COVID-19.
The action plan
We plan to host a series of online focus groups with young people with T1D aged 13-20 to explore the topic of social media and wellbeing. We plan to use creative and engaging activities to facilitate discussion of this complex and sensitive topic. At present, we are recruiting a group of volunteers who have Type 1 diabetes (aged 13-20) to form an expert Youth Advisory Panel, to help us design the focus groups and support the research at later phases.
What do we hope to gain by carrying out this research?
A key outcome of this research is the identification of mental health risks and support needs related to diabetes-specific and general social media interactions for young people with T1D. Other important outcomes include strengthening research collaborations between Northern Ireland, Republic of Ireland, and Denmark and empowering young people with T1D to play a key role in shaping this research.
Dr Emma Berry shared with us the key messages based on her research findings.
Themes were reflective of the dichotomy of functions and experiences of social media as reported by young people with Type 1 diabetes. While social media has evident benefits such as a tool to facilitate sharing and social cohesion, young people are aware of some of the less helpful qualities of this online ‘alternative’ reality.
Young people with Type 1 diabetes are faced with similar overarching challenges posed by social media as those living without a chronic health condition, such as the pressure to convey themselves in a positive/attractive manner and being bombarded by an abundance of (often conflicting) information relevant to their appearance and health. However, young people with Type 1 diabetes experience additional challenges specific to the pressure to manage and ‘thrive’ with their condition, and/or the pressure to hide their condition in public spaces.
Young people with Type 1 diabetes seem to be more aware of the negatives of social media than what Healthcare providers/parents perceive, but they do not necessarily have the tools to deal with negative content.
Healthcare providers and parents share the view that social media facilitates peer connection and learning through others’ lived experiences and advice. However, they express concern with the ability of young people to navigate through and discern helpful versus unhelpful diabetes-related content. Furthermore, healthcare providers in particular worry that ‘unsolicited’ advice provided online can undermine their authority which they experience as disempowering.
Exploring creative ways to support resilience online is endorsed and is a key subsequent step in this research.
The focus group themes are also currently being captured and conveyed in the form of a comic, which at present is being developed by PI (Emma Berry), Youth Advisory Panel members, and a local comic artist Jim Lavery (https://revolvecomics.com/). This comic will be open access and will be shared with and by academic/research and charity networks (e.g. Diabetes UK) on public-facing social media platforms.
The comic output was designed by the youth advisory panel and captures the themes of the study
PsyArXiv Preprints: The role of social media on psychological wellbeing from the perspectives of young people with Type 1 diabetes and their caregivers: a qualitative study
If you are interested in finding out more about the project, please contact the project lead Dr Emma Berry on E.Berry@qub.ac.uk.