Our Researcher in Focus for June is Prof. Imelda Coyne, Professor in Children’s Nursing & Co-Director of the Trinity Research in Childhood Centre (TRiCC) at Trinity College Dublin. Along with her co-investigators Prof. Maria Brennar, Ms Carol Hilliard, Prof. Declan Cody, and Prof. Edna Roche, Imelda is funded through the National Children’s Research Centre Paediatric Research Project Grant Scheme for her project “Intervention to improve youth question-asking and provider education during paediatric diabetes visits: The PACE study”.
Type 1 diabetes (T1D) is a chronic auto-immune condition, typically diagnosed in childhood. In T1D, immune cells attack and destroy insulin producing cells in the pancreas. Insulin is important for the transport of sugar (glucose) from the bloodstream into cells where it is used for energy production. Low levels of insulin in T1D lead to high blood sugar levels that can cause major complications such as diabetic ketoacidosis. The treatment of T1D requires the administration of insulin, typically given by injection or insulin pump.
The incidence of T1D is increasing worldwide, including in Ireland, where we have a very high incidence of children and adolescents under 15 years old with T1D. As Imelda explains “In 2015, there were 2,700 children diagnosed nationally, estimated to cost approximately €10 million per annum”. Adolescents with T1D are at particularly high risk of developing diabetes related complications such as diabetic ketoacidosis: “Adolescence is a risky period for adolescents with Type 1 diabetes mellitus due to non-adherence to treatment, infrequent attendance at clinics, and poorly controlled blood sugars, which can lead to serious complications and adverse impact on health outcomes”.
Previous research shows that adolescents are not actively involved during their medical visits: “Adolescents tend to find it difficult to talk to their doctor and usually rely upon their parent (either the mother or father) to do most of the talking and answering questions. Some adolescents found the clinic encounter stressful, very routinised and focused on numbers”.
This is despite international diabetes guidelines emphasising the need to empower adolescents to manage their condition. This is an extremely important step as they transition towards adult healthcare services: “Before adolescents move to adult healthcare services they will need to learn how to talk with their doctor, make decisions and to manage their condition without their parents help. Current diabetes guidelines state that the paediatric diabetes service needs to be patient-centred, and doctors need to educate and equip adolescents with the skills to manage their diabetes on their own”.
As such, there is a real need for youth focused interventions to promote adolescents’ communication, engagement and self-advocacy skills in diabetic clinic interactions with their healthcare providers. To meet this need, Imelda and her research team aim to develop and evaluate an intervention to improve adolescents’ question-asking and encourage the doctors to provide more education during paediatric diabetes clinic visits: “We want to help adolescents to be more confident and to talk more with their doctor, ask more questions, and become more involved in decisions and management of their condition. This will help them learn how to take care of their diabetes so that they can be prepared for when they grow up and move to the adult diabetes clinics”.
Imelda and her team have conducted focus groups with adolescents, parents, and healthcare providers to determine how to involve adolescents more during paediatric diabetes visits. This information has been used to produce an educational video that encourages adolescent involvement and to develop a question prompt list that can be used as a communication aid: “We have set up a youth advisory group and a parent advisory group and they are advising us on all aspects of the research. We have interviewed adolescents, parents and doctors/nurses to find out what happens in clinic encounters, to design the educational video and a list of questions in the question prompt sheet Adolescents with diabetes helped make the video which focused on key messages and advice for other adolescents. These were: 1. A message of empowerment; 2. Managing your diabetes so that you can get on with the fun stuff in life; 3. The importance of promoting independence for young people with type 1 diabetes; 4. Reassurance around talking at clinic visits; 5. How to become more comfortable to speak and ask questions; 6. Practical advice on how to think of questions and how parents can encourage their son or daughter to speak at clinic visits. The adolescents helped with devising the questions for the question prompt list and this list now has 16 questions that adolescents can check if they want to ask those questions when they meet with their doctor”.
Using the educational video and question prompt list, the team are now testing whether the intervention has an impact on adolescents’ behaviour in relation to question-asking, clinic engagement, satisfaction, self-confidence and provider education compared to a group of adolescents who receive standard care. Clinic encounters are being audio-recorded to ascertain the level of question asking and type of engagement between adolescents and their doctor/nurse. The adolescents are also asked to complete self-reporting questionnaires before and after each visit. Blood sugar levels from medical records at multiple time points are being compared to see if there are differences in levels of glycaemic control between the two groups.
Ultimately, it is hoped that the intervention will lead to increased adolescent engagement during clinic visits and better health outcomes: “It is important that we find ways of encouraging adolescents to be active in managing their diabetes, so they are more prepared for the lifelong responsibility and to prevent worsening of their health, and the associated costs to the healthcare services”.
Additional information on Imelda’s research can be found through the following links:
Trinity Research in Childhood Centre website: https://www.tcd.ie/tricc/
ResearchGate: https://www.researchgate.net/profile/Imelda_Coyne
Twitter: @ImeldaCoyne, @TCD_TRiCC