A Flinders University study found high levels of anxiety, fear and initial shock among caregivers of young people living with childhood glaucoma, some of whom have been diagnosed with genetic glaucoma themselves.
“At the start, diagnosis of the childhood condition, at birth or up to 18 years, can be a stressful or traumatic experience for caregivers,” wrote ophthalmology researcher Lachlan Knight in his PhD study of 35 primary carers of childhood glaucoma cases.
“Caregivers face a number of psycho-social wellbeing risks, from feelings of guilt and regret about their child’s delayed diagnosis to fear and anxiety related to medical and social support, and later, loss of control as their child develops medical autonomy. This study raises concerns for caregivers’ quality of life, even though many of them develop positive coping strategies.”
