A study by Finders University, into the challenges, both visual and non-visual, caused by childhood glaucoma, found that children and adolescents living with the rare, chronic eye condition, develop a high level of emotional and social resilience to cope.
Researchers believe that the personal stories of these people can help shape methods of support and strategies to improve their life inside and outside a clinical setting.
The study raises important implications for how we engage and empower children in their eye care
“The study raises important implications for how we engage and empower children in their eye care so that they are ready and confident to manage their condition on their own,” says lead researcher Lachlan Knight, from the Flinders Health and Medical Research Institute Eye and Vision at Flinders University.
“Navigating childhood and adolescence with a rare eye condition, attending multiple appointments, and missing school can be tough for children because their peers may not understand what they are going through.
“Children, and most often teenagers, do worry about their glaucoma and how it will impact on their future, in particular career choices, getting a driver’s license and navigating adult eye care without their parent or guardian.”
While the study found a high level of resilience among participants, including the ability to adapt to their visual limitations by using technology in the classroom, it also found the need to develop interventions that improve a child’s ability to manage their condition. The researchers also encourage clinicians to allow children to have an active voice in their care by directing questions towards them instead of their parent or guardian.
Over the past two years, researchers at Flinders University have interviewed 100 young people and are close to validating the world’s first quality of life measure for individuals with childhood glaucoma.
Reference
The article, ‘Quality of life in children with glaucoma: a qualitative interview study in Australia’ (2022) by Lachlan SW Knight, Bronwyn Ridge, Sandra E Staffieri, Jamie E Craig, Mallika Prem Senthil and Emmanuelle Souzeau has been published in BMJ Open doi: 10.1136/bmjopen-2022-062754
