Childhood glaucoma is a rare type of glaucoma that is diagnosed before someone turns 18 years old. Living with childhood glaucoma can be challenging, and there is little research out there that tells us about how the condition may impact on someone’s life.
A team of researchers at the Australian and New Zealand Registry of Advanced Glaucoma (ANZRAG) at Flinders University, Adelaide, are dedicated to putting the spotlight on childhood glaucoma. They want to help create better support systems, promote awareness of this rare condition, and give a voice to those living with childhood glaucoma.
Over the past 18 months, the ANZRAG researchers interviewed almost 50 adults with childhood glaucoma and asked them about the impact of the condition on their lives.
From these interviews, they report that adults with childhood glaucoma are resilient and adaptable to the challenges of living with the condition. It was also found that adults form a strong bond with their ophthalmologist and often rely on family and friends for emotional and social support.
Because childhood glaucoma is rare, it was common for research participants to sometimes feel lonely and misunderstood by their friends, family, or workplace. It was also very common for adults to feel worried and protective of their eye health because they did not want their vision to deteriorate or their eye pressures to increase.
The researchers also found that childhood glaucoma can impact on someone’s decision-making when planning to have a family, for a variety of reasons. Adults often sought genetic testing to understand their risk of passing on their glaucoma to their child, and to seek peace of mind.
From these interviews, the ANZRAG researchers have made a questionnaire to measure the impact of childhood glaucoma.
They need as many adults with childhood glaucoma as possible to complete the questionnaire so that they can make sure that it is accurate.
The results of this research will help support groups and healthcare providers to better understand how to support adults with childhood glaucoma wherever they are in their journey.
Can I complete this questionnaire?
If you are an adult and were diagnosed with any type of glaucoma before the age of 18 years, the ANZRAG would be greatly appreciative if you could complete this questionnaire. It only takes 10-20 minutes and is accessible to people with vision impairment.
To receive an electronic or hard copy of the questionnaire, or to complete it over the phone, please contact Lachlan or Karon for more information on how. You can also request a copy of the study results.
Contact information:
Lachlan (Flinders University): Lachlan.WheelhouseKnight@flinders.edu.au
Or Karon: 0800 452 826 or info@glaucoma.org.nz