What is the difference between the diagnosis of a visual impairment or serious eye condition for a child as opposed to an adult?
Both situations can be devastating for those involved. Adults may often have previously had normal visual acuity, a mainstream education, a career and an independent lifestyle, and accepting the irreversible loss of these can be awful.
The diagnosis of vision impairment in children is particularly difficult. It is natural that families experience many emotions that may include shock, fear, grief, sadness and despair. They may even feel relief that their child’s sight problem is at last being taken seriously. All of these feelings are quite common and could be part of the process they will go through during the early weeks and months, and the emotional rollercoaster for a child and family should not be underestimated. The uncertainty of what lies ahead can be difficult, especially in terms of education and independence, and families need considerable help in understanding their child’s visual impairment, prognosis, and the support available so that they are able to move forward.
What advice can you give for situations where there are younger children who might not understand their condition fully?
It is very much dependent on the age of the child and the needs of the family involved. An intuitive, stepped approach, based on what that family can handle is helpful. In the clinic the use of age-appropriate language is important, and will evolve with time as the child’s understanding of their condition grows.
"The diagnosis of vision impairment in children is particularly difficult...Families experience many emotions that may include shock, fear, grief, sadness and despair"
Many local authority teams include Qualified Teachers of the Vision Impaired (QTVIs) and habilitation workers who are highly skilled in working with children – including babies and children in their early years. In addition, voluntary sector organisations have both staff and resources specifically established to help families. Referral to these organisations is crucial at this time.
What are the most important first steps for a family to take after a visual impairment or serious eye condition diagnosis?
Each family is different, and it will depend on the experience of vision impairment within that family. Some conditions may be familial, and other family members may also be affected.
The family’s understanding of their child’s problem, and knowing where to get support when they are ready for it, is important. Families will differ in terms of their readiness at different stages. Meeting other families who have been through a similar experience can be helpful in getting support and reassuring parents about future concerns. The Starting Point website (bit.ly/2bn09N1) will be a virtual hub for resources and contacts.
At this point, what steps get forgotten?
As professionals, it is important to consider the child and their family holistically. Family dynamics and external stresses, such as time and financial pressures, all need to be taken into account when working with children and their families.
In the clinic, it is possible to overlook the emotional impact following visual impairment diagnosis. Families need timely support and this differs between families. The amount of support each family requires will also vary.
For some children, the problem extends beyond their ophthalmic diagnosis, the family may have received upsetting news regarding a systemic diagnosis, or the child may have multiple general health problems with lots of medical appointments, investigations and agencies involved.
Regional variations in support services can become confusing, and Starting Point aims to signpost families to their local relevant support organisations in those early days.
What would you like optometrists to remember about the project?
The leaflet is a visual aid developed by a variety of clinical and charitable professionals for families to take home, signposting them to a website, allowing them to electronically enter a centralised hub of trusted source information to help them through those early months, and direct them to appropriate support.
We want optometrists and dispensing opticians to be aware of the programme, and take an active part – along with their medical and orthoptic colleagues – in promoting it to families who may benefit from such support. We will be asking hospital departments and specialist children’s services to display a poster in their waiting rooms and ensure that the leaflet is made available to every child at the point of diagnosis.
When will the resource be launched?
The official go-live date for Starting Point is 13 October 2016, which appropriately coincides with World Sight Day. Leaflets and posters will be distributed to all paediatric hospital eye departments in October.
Any optometrists or dispensing opticians who are working with children who are vision impaired can request copies via Vision 2020 UK.
Laura Ramm is a specialised orthoptist at Birmingham Children’s Hospital, and a member of Vision 2020 UK.