Sarah Holton, RNIB’s Children, young people and families officer, tells Insight about a new resource to help parents talk to children with vision impairment about their eye condition.
Parents often tell us that one of the most difficult and distressing parts of finding out that their child has vision impairment (VI) is knowing how to talk about it with their child. This can be even more of a challenge if the eye condition is progressive and means that vision will get worse over time.
Transitions research into the experiences of young people with vision impairment revealed a significant range in the quality and quantity of opportunities they had to talk about their own VI. Where young people felt informed about their eye condition, and had had chances to talk about it, this was reported as being helpful. Whereas some young people wanted to know more and told us that the people or circumstances around them in earlier years didn’t give them the opportunity to find out.
As a result, we have produced a new guide to support parents and carers of children with VI as they think about how to discuss this.
We spoke to parents, young people with vision impairment and adults who have VI themselves, who told us what they found most helpful for them.
The guide covers who the right person is to have the discussion, when the time is right, what to say (and what not to say) and how to get further support. Each child and family will have a unique experience, so the leaflet is not prescriptive. The aim is to help provide answers to commonly answered questions and to encourage conversations that can be informative, supportive and reassuring about children reaching their potential.
It also aims to equip professionals in eye clinics, schools and specialist services in their work with families.