Dr Eimear Morrissey
Postdoctoral Researcher, School of Medicine and School of Psychology,
University of Galway
The Young Adult Panel (YAP) are taking the lead in a study to transform type 1 diabetes management and support.
Type 1 diabetes is a chronic condition in which the pancreas makes little or no insulin. Insulin is a hormone, which allows sugar (glucose) to enter cells to produce energy. The psychological and physical challenges can be exhausting, particularly as young adults try to enjoy a full life.
Lack of support for young adults with diabetes
Dr Eimear Morrissey, Postdoctoral Researcher at University of Galway, says: “Young adult diabetes services do not meet the needs of many young people. For example, each time they attend clinics, they may meet different doctors and have to tell their story anew.” A study called ‘D1 Now’ wants to reimagine how diabetes care is delivered to young people.
Young adults seeking change
Síofra Kelleher, aged 23, is one of the eight YAP members in the D1 Now study. She was diagnosed with type 1 diabetes at age 10. As complications increased, she joined patient studies but felt like she was ‘just a number.’ “However, I found the panel. This enabled me to become an advocate, including taking part in international conferences and patient advocacy.”
I wanted to try and take control of my situation by helping to make change.
Lydia Dodd
Cameron Keighron has been a member for nine years. After being diagnosed at 16, they said: “I was put in adult services straight away. Their attitude was, ‘You are an adult and should know how to manage your condition,’ but I only just got diagnosed.”
Complaints of information gaps are typical, including how to live with diabetes with a desire for sport, studying and work. That feeling of not being understood runs deep, according to Kelleher. “I know someone who doesn’t attend a clinic; with overcrowding and low staff numbers, if you miss an appointment, you could be put back on a waiting list for years.”
Novel idea receives trial funding
Lydia Dodd, diagnosed at 22 years old, says: “I wanted to try and take control of my situation by helping to make change.” So, Dodd joined the YAP to support the research. Together, the panellists are considered ‘co-researchers’ and provide input into each stage of the study, including sitting on interview boards and designing questionnaires.
D1 Now has been awarded €1.2 million from the Health Research Board for a randomised study at 12 clinics across Ireland. Dr Morrissey adds: “D1 Now has emerged as a catalyst for change. This study has empowered young adults by allowing them to act as co-researchers and reimagine diabetes care delivery, to reshape the entire experience and enhance patient support. We hope that other services will learn from this experience.”