Making research more relevant
The intervention for a study to develop an awareness campaign for the earlier detection of type 1 diabetes in children (EDDY study) came directly from public participation.
Our approach to public involvement
In 2015 we reviewed our approach to public involvement, after joining with two other trials units to form the Centre for Trials Research. We needed to reflect the variety of models of public involvement that may improve research. A good example of how public involvement has critically influenced the design and conduct of a study is the EDDY study. The study is led by Professor Lesley Lowes with South East Wales Trials Unit (SEWTU) lead researcher, Julia Townson.
Early presentation and diagnosis of type 1 diabetes (T1D) in childhood is essential to avoid the life-threatening condition diabetic ketoacidosis (DKA). DKA is the primary cause of mortality and morbidity in children with type 1 diabetes (T1D), leading to the death of approximately 10 children a year in the UK. The rate of children presenting in DKA at onset of T1D has remained unchanged at 25% over the past 20 years. The aim of this study was to design, develop and test the feasibility of delivering a complex intervention to parents of children under 18 years and to primary care staff in three adjoining areas in South Wales, to increase awareness of symptoms of type 1 diabetes.
The study was funded by Heath and Care Research Wales to develop an awareness campaign for the earlier detection of type 1 diabetes in children because delays in diagnosing diabetes can be potentially life-threatening.
Perspective of parents involved in study
Julia Townson and two parent representatives, Stephen Thomas and Sarah Earle-Jones, discuss their involvement in EDDY at the Involving People Network meeting in February 2016:
Stephen: ... you brought us on board as parents to look at the intervention in schools. Some of us were parents with children with diabetes and some, like myself, were fortunate enough not to have children with type 1 diabetes. Why did you feel that it was important that you had that mix?
Julia: Parents with children with type1 diabetes are well aware of the symptoms. Therefore, it was important to canvas the opinions of those without to ensure the intervention had the most chance of success.
Stephen: ... you brought us together for a number of meetings to design the intervention. Did it go as you expected?
Julia: Well, in some ways yes and in some ways no. Yes, I was confident that parents would be able to design something - we were thinking a fridge magnet, that sort of thing, but what they came up with exceeded our expectations! The shopping bag was such a fantastic idea.
Stephen: What about you Sarah, what were your expectations?
Sarah: I had none! I arrived at the first meeting with some trepidation but I think to be honest that we all felt like that. By the end of the meeting I was excited by the task entrusted to us and felt quite passionately about the need to get information ‘out there’, to increase awareness of type 1 diabetes. I was shocked by the stories relayed to us by the other group members who were parents of children with type 1 diabetes.
Julia: What about your expectations Stephen?
Stephen: I guess, initially, I didn’t have much in the way of expectations only that I was enthusiastic about taking part as although my daughter is not a diabetic my mother had type 1 diabetes. However, I was very pleased with the way that you set us up as a panel as we were there from the beginning and although you had ideas about the type of interventions, you were very open to our input.
Julia: Yes, we wanted as much of your input as possible. How did you think that your input changed things?
Stephen: We had a number of important conversations about the best way to raise awareness in a condition that is thankfully relatively rare ... Therefore, we felt, as a group, it was important to get the message across in a way that wasn’t a single intervention which got lost but rather in the form of perhaps an everyday item so therefore, along with the leaflets and messages that were going into GPs we decided that using a bag, as with the 5p charge people are saving bags, would be an effective way of doing it.
Stephen: Sarah what did you think about your input?
Sarah: I too was impressed by the level of input that we were given and that our contributions were both valued and valid. It was an exciting project to be a part of and I feel a splash of pride when I notice the blue bags popping up as I’m out and about!
Impact of study
The intervention was designed and developed using a co-production model with public and General Practitioner (GP) advisory groups. It was delivered through schools, nurseries & GP surgeries in Cardiff, Vale of Glamorgan & Bridgend. Feasibility and potential impact of the intervention for key stakeholders was evaluated using qualitative methods. This feasibility study shows that within a South Wales community, it is acceptable and viable to develop and deliver a multi-component intervention to raise awareness of the symptoms of T1D of parents and GPs to promote an earlier diagnosis of T1D and reduce the risk of DKA at clinical presentation. Anecdotal evidence of the impact of the intervention is encouraging.