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Caregivers of young people living with childhood glaucoma need more social and medical support, according to a study undertaken at Flinders University and published in Ophthalmology Glaucoma.
Despite increasingly advanced treatments and early intervention, parents and carers, some of whom have been diagnosed with genetic glaucoma themselves, face significant long-term challenges. With no cure or way to reverse the damage, and faced with the prospect that their child may lose their sight, they experience initial shock, high levels of anxiety, and fear.
Childhood glaucoma describes a group of rare conditions affecting approximately one in 30,000 children across Australia. It is largely a genetic condition, with almost 40% receiving a genetic diagnosis.
"Flinders University glaucoma experts led by Distinguished Professor Jamie Craig are developing the world’s first Quality-of-Life measure for individuals with childhood glaucoma"
“At the start, diagnosis of the childhood condition (at birth or up to 18 years) can be a stressful or traumatic experience for caregivers,” says 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,” he said in an article in Ophthalmology Glaucoma
“This study raises concerns for caregivers’ quality of life, even though many of them develop positive coping strategies to manage their responsibilities.”
Study participants were quoted as saying: “When she was born and got the diagnosis … I kind of shut off from her. It was too painful … and “I felt very helpless because I couldn’t get answer to questions … Would she have any eyesight after all this was over?”
Support Needed
More support and strategies for managing caregiver burden are required, including social as well as medical support, the South Australian researchers say, adding a diagnosis could affect families’ family planning decisions.
Genetic counselling was sought by 57% of caregivers to understand their risk of passing on any genetic variants that may cause glaucoma in their child.
Seeking social and professional support groups and systems was the most common strategy, commencing with help from partners and parents, and also through open communications with their child and friends about their experiences.
Along with guilt, some caregivers expressed frustration at lack of awareness and knowledge of childhood glaucoma from health care professionals or peers. Almost half of respondents spoke of feeling overprotective of their child’s health, regardless of the age of the child or vision status.
After interviewing more than 100 people impacted by childhood glaucoma over the past two years, Flinders University glaucoma experts led by Distinguished Professor Jamie Craig are developing the world’s first Quality-of-Life measure for individuals with childhood glaucoma.
The tool will be used in future research and clinical settings to identify those who may benefit from extra support, including psychological or genetic counselling.
Glaucoma Australia Facebook Support Group - a community created to connect people from all stages of their journey with glaucoma. Join here.
Glaucoma Australia Childhood/Juvenile/Congenital Facebook Support Group - created for parents, families and individuals affected by childhood glaucoma. Join here.
This article first appeared in mivision.com.au It has been reprinted with the permission of mivision (Toma Publishing).
The article, ‘The caregiver experience in childhood glaucoma: An interview study’ (2022) by Lachlan SW Knight, Bronwyn Ridge, Sandra E Staffieri, Jamie E Craig, Mallika Prem Senthil and Emmanuelle Souzeau has been published in Ophthalmology Glaucoma DOI: 10.1016/j.ogla.2022.02.005
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We are inviting individuals who have accessed eyecare services previously to participate in a focus group discussion so that we can better understand what good eye care means to the patient.