A team from Ulster University are conducting a study to understand the lived experiences and research priorities of parents/caregivers of teenagers with Down’s syndrome living in Northern Ireland.
We want to gain a deeper insight into what parents/caregivers experience on a day-to-day basis in their journey of raising a teenager with Down’s syndrome. Additionally, we want to explore your thoughts and feelings about research conducted on the topic of Down’s syndrome and identify any areas of research you would like to see researchers prioritise.
To do this, we are inviting parents/caregivers to take part in a focus group.
To be eligible to take part, parents/caregivers must:
- Have/care for a teenager with Down’s syndrome between the ages of 13 and 20 years old
- Live in Northern Ireland
- Speak English
The focus groups will be held on the 7 October, 2023 at this address: 636A Antrim Road, Belfast, BT15 5GP.
If this doesn’t suit, please still consider signing up as we will try to accommodate other dates!
If you are interested in taking part, please click here to go through to an online signup sheet.
If you have any questions, please contact the PhD researcher Aoife Grenham McNamee at Grenham_McNamee-A@ulster.ac.uk.
About the research team
Aoife Grenham McNamee
I am a PhD researcher at the School of Medicine in Ulster University. My project explores the development and wellbeing of teenagers with Down’s syndrome who also have congenital heart disease. I am passionate about supporting and promoting inclusivity for individuals with Down’s syndrome and their families in all areas of life.
Kiai Chambers
I am a PhD researcher at the School of Medicine in Ulster University. My focus is on children with Down’s syndrome who are diagnosed with congenital heart disease. I am also passionate about understanding the impact that having additional diagnoses, like autism or CHD, has on individuals with Down’s syndrome and their families.
Aoife Grenham Mcnamee and Kiai Chambers are the primary researchers for this study. They are supervised by:
- Prof. Frank Casey, Clinical Professor Paediatric Cardiology, Ulster University and Queen’s University, Belfast
- Prof. Victoria Simms, Professor of Developmental Psychology and Research Director at the School of Psychology in Ulster University
- Dr. Brian McCrossan, Paediatric Cardiologist at the Royal Belfast Hospital for Sick Children
- Prof. Nicola Doherty, Clinical Psychologist at the Regional Trauma Network, Department of Health and Ulster University
- Prof. Laurence Taggart, Professor of Intellectual Disability Research in the School of Nursing and Paramedic Science at Ulster University