Young people with Type 1 diabetes are being sought to take part in a youth panel aimed at improving the health and wellbeing of 18 to 25-year-olds living with this autoimmune disease.
The panel, which will allow young adults with the condition to have a voice, will work with a research team as part of this innovative new project, the first of its type in the country.
The 30 month research study, which began last month and will conclude in June 2016, is being led by Dr Sean Dinneen, a consultant physician at University Hospital Galway and the head of the school of medicine at NUI Galway. It is funded by the Health Research Board.
Ten per cent of the Irish population have diabetes and one per cent of this figure have Type 1. Some 174 people aged 18 to 25 years attend UHG’s monthly diabetes clinic. The condition can have an early onset - one local patient is aged just six months. Many are diagnosed when they are aged four to five years or in their teens.
Young adults “struggle” with managing the condition, attending clinics and coping generally, explains Mary Clare O’Hara, the project’s manager and principal researcher.
They must monitor their blood glucose levels and inject themselves with insulin several times a day, she says. They also need to be careful about their diet and what exercise they do to achieve good blood glucose control. Many struggle with these tasks and this can result in poor health outcomes (including premature death ).
“I guess the bottom line is they do not want to have diabetes. Research groups have largely focused on either younger adults as they transition from paediatrics to adults services (15 to 19 year age group ) and older groups (25 plus ) but little focus have been given to young adults (18 to 25 years ). Our study has many strands but one of our initial focuses with be the establishment of a youth advisory panel in conjunction with John Fitzmaurice and his team in JIGSAW, the mental health drop-in service for young adults.”
The panel will be made up of 10 to 12 “users”, ie, young adults with Type 1 diabetes who will help design and guide the research.
“They will be the voice of young adults with the condition on the research group and study steering group and will be trained in committee and basic research skills,” outlines Ms O’Hara. “Actively involving young adults from the outset is very novel and we hope it be bring about true co-creation and research collaboration between young adult users and the diabetes research team.”
She says the team is keen to learn more about the difficulties young adults face in managing their diabetes and explore new ways of providing them with health care that meets their needs.
“We have experience in delivering and evaluating a structured education programme [called Dose Adjustment for Normal Eating or DAFNE] in adults with Type 1 diabetes (average age 41 years ) which has been shown to improve outcomes, including wellbeing and quality of life. We will use this experience to develop an intervention of care delivery geared towards young adults [18 to 25 years]. We will review the existing literature to identify what is known already about ways to help young adults manage their diabetes.”
In addition, they will carry out interviews and organise focus groups with young people (and other relevant people such as family, friends and healthcare providers ) to inform the development and testing of the intervention.
The organisers of the research project, entitled “Developing an Intervention to improve outcomes for young adults with Type 1 diabetes in Ireland” also plan to establish a network of diabetes centres in Galway, Dublin and Belfast interested in the care of young adults.
“We will ask them to participate in a future application to the Health Research Board to pilot test the new intervention developed in this project.”
Mary Clare O’Hara is urging young people with Type 1 diabetes to get involved with the project and be a voice for those who have the condition. An information evening will take place at the Jigsaw premises on Fairgreen Road (opposite the new coach station ) from 6.30pm to 8pm on Wednesday February 19. For further information contact Mary Clare O’Hara at (091 ) 542840 or email [email protected]