Childhood Vision Impairment: Minimising the Impact

At any one time it is estimated there are approximately 4,000 children growing up with vision impairment, although it remains challenging to determine the accuracy of this figure.¹ What is known is that vision impairment can have a lifelong impact on a child, in all areas of their development such as social, emotional, physical and cognitive,² but that it also impacts on the child’s family – financially and on their quality of life.³

As well as holding a vital clinical role, all eye health professionals should be aware of the part they can play in minimising this impact, writes Dr Sue Silveira.

Limited research exists about the nature of Australian childhood vision impairment. Published data drawn from the Australian Childhood Vision Impairment Register (on 904 children) tells us that most families receive a diagnosis of vision impairment by their child’s first birthday. According to the Register, common conditions related to vision impairment include retinal dystrophies, cerebral vision impairment, and oculocutaneous albinism.1 It is not unusual for children to have more than one ocular or vision condition.

Interestingly, moderate vision impairment is most common, and few children are considered totally blind. Children frequently have comorbidities such as developmental delay, and other issues including cerebral palsy, epilepsy, and autism spectrum disorder. Due to their complex health needs and disabilities, many children require lifelong support.

EARLY DIAGNOSTIC PERIOD

Eye health professionals are often the first clinicians to become involved with families when vision impairment is suspected. For families, this can be a challenging time as they grieve, as they struggle to understand what is happening, as they try to comprehend how their journey has changed, and what their future may look like. As they begin to adjust to a new baby, their world is intruded upon by medical appointments and professionals, all of which until recently, did not feature in their life. Understandably, families experience sadness, uncertainty, and can feel overwhelmed and vulnerable.

The early diagnostic period can be equally challenging for both families and eye health professionals. Due to the natural stages of child development, even when vision impairment is not present, it may be difficult to achieve an accurate estimate of a child’s visual function. Children with vision impairment are often unwell, which can limit the type and amount of assessment they can tolerate. This is all happening at a time when gathering information to reach a diagnosis is critical. Families may be desperate for a definitive diagnosis, for an answer about the level of their child’s vision impairment and to know their child’s long term visual prognosis. This information is critical to help families begin to understand what is happening, how their journey has changed, and what the future may look like.

Eye health professionals are understandably cautious when reaching and reporting a diagnosis to families. Diagnosis often relies on complex outcomes from genetic and radiological testing and other advanced assessments. Access to such assessments may be expensive and delayed due to issues with availability. When inherited eye conditions are diagnosed, the impact on the family can extend beyond the child, to other family members and to considerations for the likely involvement of future children.

THE ADJUSTMENT PERIOD

Over time, as families begin to adjust and look to the future, there is much that eye health professionals can do in terms of family education, support, and advocacy. To be successful, eye health professionals must be well informed, able to guide families to funding and support pathways, and be willing to remain engaged with children, even when the need for management of eye and vision conditions lessens. In other words, eye health professionals must understand the world outside of the clinical domain – the world that families are raising their child in.

To begin to understand the field that supports children with vision impairment and their families, it is helpful to refer to the education sector. Education is often practical and holistic, and in Australia a clever approach is adopted called the Expanded Core Curriculum or ECC.4 The ECC is “a framework for instruction in a specialised set of vision-related skills”5 for children who have vision impairment. The ECC details nine key domains, which include the concepts or skills children with vision impairment need such as:

• sensory efficiency,
• assistive technology,
• orientation and mobility,
• social interaction,
• self-determination,
• independent living,
• recreation and leisure,
• career education, and
• compensatory access.

The ECC is applied in education with the broad goal of access to all areas of school life and community. The ECC is a fluid approach that aligns with the child’s needs. For example, there may be times when a young child requires high levels of support in developing their orientation and mobility skills, but little support with career education. The ECC drives individual planning, which is negotiated between families and education providers. An awareness of the ECC helps eye health professionals understand the education continuum that exists to mitigate for the impact of childhood impairment. Often clinical reporting is called upon to determine levels of educational funding. Eye health professionals need to be aware of reporting requirements and must provide reports that minimise medical jargon to ensure administrators understand the child’s visual needs. Eye reports should also convey the broad visual needs of the child in regard to their literacy access.

In recent times Australia has adopted the National Disability Insurance Scheme (NDIS), a scheme that “provides funding to eligible people with disability to gain more time with family and friends, greater independence, access to new skills, jobs, or volunteering in their community, and an improved quality of life.”6 Eye health professionals hold a key reporting role to ensure children receive suitable funding. Again, this reporting must reflect the child’s diagnosis, the nature of their vision impairment, and their visual needs.

VISION SERVICES

Australia is blessed with long established organisations that provide vision services and support across the age spectrum including early intervention, transition to school, and employment. Organisational expertise is diverse and includes orientation and mobility training, access to involvement with guide dogs, low vision aids, and assistive technology, to name a few. These organisations also provide children with the opportunity to meet children like themselves with lived experience of vision impairment, to form friendships, gain peer support, understand their diagnosis, and help determine the opportunities that await them. Essential psychosocial support is also available for families.

Importantly, low vision service providers frequently offer the facility for low vision functional assessments, usually conducted by an orthoptist. These functional assessments report on a child’s capacity to use their vision in a sustained, meaningful way in their own environment, and add critical and practical information that is not available in a clinical report. Eye health professionals should encourage families to source a low vision functional assessment for their child. It will provide helpful information for families to apply within their family environment. It will also inform other professionals working with the child, to understand how best to encourage the child to use their vision under optimal conditions. Other recommendations that eye health professionals are typically ill equipped to make, such as the decision to introduce braille, may be included in this functional reporting.

COMMUNITY SUPPORT

Australia also proudly boasts key parent[1]led advocacy groups, which commit to supporting families, and in doing so, work closely with organisations and government to connect families, enhance clinical care, and encourage research.7-11 Families are ultimately tasked in the role as their child’s champion. In accepting this role and in becoming their child’s greatest advocate, families can be supported by eye health professionals, by being made aware of NDIS funding, the organisations that provide essential support, and also parent advocacy groups. Given that eye health professionals form relationships with families early in the diagnostic period, clinicians need to be ready to share such details and not be concerned about recommending that families access non[1]clinical services as soon as possible. These services may become a lifeline for the family’s survival, and referral can mean that essential early intervention starts immediately.

ENHANCING THE CLINICAL EXPERIENCE

While an understanding of the world outside the clinical environment is essential, there are many approaches that eye health professionals can also consider that will enhance the clinical experience – for themselves, the child, and families. Many disability support organisations have adopted the mantra of “nothing about us without us”12 meaning inclusion must be considered and applied, with respect, empathy, and dignity for the people involved.

When determining visual symptoms and challenges, where possible, children and their families should be encouraged to engage in conversations. Children can provide amazing insights into their own visual experiences. Parents and carers know their child and know them well. They hold a wealth of information and can report on their own observations of their child. This may reveal insights into the child’s visual behaviours that are not obvious during the clinical assessment, or are so subtle that they are missed by people unfamiliar to the child.

Communication is key in any assessment and many non-verbal children have established communication strategies in place from early on. At all times, the child’s preferred and most effective mode of communication should be encouraged. This might mean booking an Auslan interpreter, ensuring language interpretation for the family, or basic skills such as explaining clinical procedures in lay people terms.

Many children with vision impairment experience symptoms related to their eye condition, such as glare and visual fatigue.1 Such symptoms can reduce access to their vision in a sustained way and negatively impact on the outcome of the clinical assessment. Eye health professionals can support children by being aware of the child’s eye condition, and the impact of environmental issues such as bright lighting or low levels of light. Additionally, eye clinics can be made ‘vision impairment friendly’ by providing good contrast, tactile marking, quiet spaces, consideration of obstacles, ease of access from the car park to the clinic, and other adaptations to improve the clinical experience for the child. It is very helpful to take the time to ‘walk in their shoes’ and to consider their visit to the eye clinic. Also remembering that family members accompanying the child may themselves have vision impairment is important.

SUPPORT THE JOURNEY

Finally, eye health professionals are strongly encouraged to see the child as a child, one who is still within a visual developmental period. The child’s vision may be helped by trialling correction of refractive error, amblyopia management, and low vision strategies that support effective and efficient use of vision. Monitoring over time for the onset of new eye conditions or deterioration of existing eye conditions is also essential.

In time, families grow to understand their child’s vision and how they can ensure their access to the visual world. They mirror advocacy so their children can then advocate for themselves, educate others, and thrive. Children with vision impairment grow to become adults that are valued and successful members of society, who action change, and encourage inclusion and access. Eye health professionals can play a key role in this journey and find mutual reward in supporting families and children to minimise the impact of vision impairment.

Dr Sue Silveira is a qualified paediatric orthoptist. She is Chief Investigator on the Australian Childhood Vision Impairment Register, holds the position of Program Director for the Master of Disability Studies at Macquarie University, and is in a conjoint academic position with Macquarie University as a senior lecturer.

Dr Silveira has taught widely in the areas of paediatric eye disease, vision loss, vision surveillance, and vision screening. She holds undergraduate qualifications in Orthoptics, a Masters in Health Sciences (Education) from the University of Sydney, and a PhD from the University of Newcastle. Her doctoral studies were in childhood vision impairment, highlighting the need to recognise the functional impact on children and their families.

References

1. Silveira, S., Martin, F.J., Flaherty, M., and Russell, H., (2021). Reporting on Australian Childhood Visual Impairment: The first ten years. Eye. 36 141–1422. DOI: doi. org/10.1038/s41433-021-01656-1.
2. Uzodinma, U.E., Ede, M.O., Onuorah, A. R., et al., (2022). Improving quality of family life among Christian parents of children with low vision in Nsukka catholic diocese using rational emotive family health therapy. Medicine (Baltimore), 101(25), e27340-e27340. DOI: doi.org/10.1097/ MD.0000000000027340.
3. Goodenough, T., Pease, A., and Williams, C., (2021). Bridging the gap: Parent and child perspectives of living with cerebral visual impairments. Frontiers in Human Neuroscience, 15, 689683–689683. DOI: doi.org/10.3389/ fnhum.2021.689683.
4. Allman, C., Lewis, S., and Spungin, S.,(2014) ECC Essentials: Teaching the expanded core curriculum to students with visual impairments. AFB Press.
5. Path to Literacy (2023). Expanded core curriculum avail at: pathstoliteracy.org/expanded-core-curriculum [accessed 7 November 2023].
6. Australian Government, (2023.) What is the NDIS? Available at: ndis.gov.au/understanding/what-ndis [accessed 7 Nov 2023].
7. Usher Kids Australia (2023) available at: usherkidsaustralia.com/ [accessed 7 Nov 2023].
8. Cataract Kids Australia (2023), available at: cataractkids. org.au/ [accessed 7 Nov 2023].
9. CHARGE Syndrome Australasia (2023), available at: chargesyndrome.org.au/ [accessed 7 Nov 2023].
10. CVI Community Australia (2023), available at: facebook. com/groups/cvicommunityaustralia/ [accessed 7 Nov 2023].
11. Paediatric Vision Impairment Alliance Australia (2023), available at pviallianceaustralia.org/ [accessed 7 Nov 2023].
12. United Nations (n.d.) available at: un.org/development/ desa/disabilities/international-day-of-persons-with[1]disabilities-3-december/international-day-of-disabled[1]persons-2004-nothing-about-us-without-us.html [accessed 7 Nov 2023].