Diabetes support at University - a questionnaire study
Research type
Research Study
Full title
A questionnaire study, investigating the experience of young adults with type 1 diabetes attending UK universities, and the diabetes healthcare professionals supporting them.
IRAS ID
272828
Contact name
Helen Partridge
Contact email
Sponsor organisation
Royal Bournemouth and Christchurch Hospitals NHS Trust
Duration of Study in the UK
0 years, 5 months, 1 days
Research summary
Research Summary
The study will comprise of two questionnaires administered through SurveyMonkey, one targeted at patients with type 1 diabetes who are or have recently attended university to ascertain what preparation/ education they received prior to leaving home and what care they feel would be beneficial to them including the potential of an attending diabetes team at the university site. The other asking via what services/ education is offered by diabetes teams nationally both to their students who are about to leave home and what services they offer or would like to offer to their local universities.
Participants will be recruited to the study by advertising through social media (Facebook and Twitter) and email using the existing contacts that the hospital site (Bournemouth) and JDRF (the diabetes charity) hold. All data will be entered remotely by the participant and Royal Bournemouth Hospital will act as the recruiting site. This is the most appropriate setting in order to obtain a nationwide representation of experiences which may vary significantly between different locations.
Summary of Results
Type 1 diabetes can affect people of any age with the diagnosis often made in youth. Living with type 1 diabetes requires constant attention and intervention by the individual treatment to maintain blood glucose levels. Emergencies can happen when the glucose level in the blood rises too high or falls too low which can disrupt daily life and may lead to a stay in hospital. Big life events often make it harder to control blood glucose levels. People with type 1 diabetes who have recently left home to start university can find it more difficult to feel in control of their diabetes and are more likely to suffer a diabetes emergency. There are several reasons for this: new routines and moving away from supportive people, family, friends and diabetes specialists.
A diabetes service that can support people during this time needs specific requirements. To find out how a nationwide service might meet the needs of this group we asked people with type 1 diabetes who are at or recently been to university and the healthcare professionals providing support.
An electronic survey was publicised through social media. There were tick box questions and the opportunity to make comments. The survey for people with diabetes looked at the preparation before leaving for university and how this could be improved, difficulties anticipated and encountered on moving to university, acceptability of record sharing across regions and preferences in how support could be accessed. The survey for diabetes specialists who look after people going to or at university asked about the process of preparing someone for going to university, how support is offered to people, both directly and indirectly through student services and university health care and acceptability for record sharing across regions. The results were analysed and presented as themes.Survey responses from 143 people with type 1 diabetes and 42 healthcare professionals, representing 20 different regions within England, Scotland and Wales were received between March 2020 and Feburary 2021.
People with diabetes survey results:
Preparation for university was excellent in some areas, consistently around drugs, alcohol and sexual health, however, more information about rights and closer working with university’s student support services was needed. One theme was of non-disclosure to the university, often due to a lack of awareness of the student support available.
Quote: “I didn't think of it (having diabetes) as relevant or as a disability at the time”
There was broad support for specific group sessions run before the start of term. Flexibility of access was a major theme with a combination of instant messaging, email, social media and face to face appointments depending on the circumstances. There was an even split between a desire to maintain contact with the home diabetes service and moving to the diabetes service in the university town with a combination considered ideal. However, it was very important for the majority of people that clinical records were shared between services in a timely and accurate manner to avoid duplicating tests, explaining previous experiences and treatment changes to different teams.
Quote: YES - I was always having to repeat everything and they didn't believe me, I really think teams need to work together, especially if I'm being prescribed something in hospital which is not available at GP practice.”
A major theme was difficulty accessing prescriptions with obstructions at many stages, including registering with a local GP and pharmacy, having the correct items prescribed and dispensed. There was variation in treatments available in different regions which all took considerable time and effort to navigate.
Quote: “Trying to get my pump supplies started up was a nightmare, with the change over between hospitals and funding. I ended up having to beg my old hospital to give me spares they had in stock to keep me going.”
Diabetes specialists: survey results
There is inconsistency in the service delivered to students across regions with 10% working with university support services to advocate for students with type 1 diabetes. A minority proactively contact primary care settings where students are registered to signpost services. Preparation, however, was felt to be comprehensive was the exception of discussing rights. One third of respondents attempt to contact the diabetes service local to the university in advance, however, this is based upon having a personal contact within the new team. Support for a national digital framework with timely access to services across regions was very strong.
The findings complemented previous work that has identified this high risk period in the lives of people with type 1 diabetes. The discrepancy between the preparation offered by health care professionals and the experience of people with type 1 diabetes at university shows that a more robust system of sharing clinical records across regions is required. Crucially this has been proven as acceptable to people with diabetes and the specialists that care for them.
REC name
North of Scotland Research Ethics Committee 2
REC reference
20/NS/0014
Date of REC Opinion
31 Jan 2020
REC opinion
Favourable Opinion