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Spotlight on sight loss

07 November 2018

Low vision or blindness can significantly affect a child’s learning progress and mental health. Journalist Anna Scott takes a closer look at how community practitioners can help families live with visual impairment.

Children aged eight to 11 with sight loss are three times more likely to develop a mental health problem than their sighted peers, according to recent research (Royal Society for Blind Children (RSBC), 2018).

Around a third are at high risk of anxiety or mood disorders, and about half show difficulties in quality of life or adaptive behaviour (RSBC, 2018).

‘Visual impairment puts high challenges on learning and development and mental health from the earliest days after birth and throughout childhood,’ says consultant clinical psychologist Dr Naomi Dale of the Institute of Child Health, who led the research. ‘The risks are even higher in those children with very low or no vision.’

Coexisting conditions

Evidence also exists of comorbidity with blindness and other conditions.  

Approximately 6% of children with learning difficulties are estimated to have a vision impairment (Emerson and Robertson, 2011), and around 20% of young people with vision impairments have additional special educational needs and disabilities (Keil, 2012). An estimated 31 in every 100,000 (0.031%) children and young people up to the age of 19 in the UK have co-occurring vision and hearing impairments (Emerson and Robertson, 2011).

The Royal National Insitute of Blind People (RNIB) points out that children considered to be mildly visually impaired may have other types of vision difficulties which, particularly when combined with other disabilities or special educational needs, can have implications for their learning and development (RNIB, 2015).

These children are not counted in official statistics as visually impaired, but children with visual acuity of less than 3/60 (blind), between 6/60 and 3/60 (severely visually impaired), and between 6/18 and 6/60 (moderately visually impaired) are included (WHO, 2007).

According to the latest available figures, two in every 1000 (0.2%) children and young people up to the age of 25 in the UK have either moderate or severe visual impairment or blindness, and five in every 10,000 (0.05%) are severely sight-impaired or blind (RNIB, 2015).

‘Assumptions should not be made that children with a greater degree of sight loss have greater need’


Sight loss in babies

Babies may have sight loss if they:  

  • Have an opaque or white reflection in the pupil
  • Have a change in the iris’s colour
  • Have the ‘red eye’ reflection missing or altered in a photograph
  • Don’t follow objects with their eyes
  • Don’t look at parents/carers when they move their head from side to side
  • Have a ‘turn’ or ‘lazy eye’
  • Have difficulty seeing small objects or recognising familiar people.

Importance of diagnosis

Some groups of children are at higher risk of vision impairment than others. In particular, very premature and very low birthweight babies, children from the most economically deprived social backgrounds, children from some south Asian ethnic groups and those with learning difficulties have a higher chance of some form of sight loss (RNIB, 2015).

However, the single biggest cause of vision impairment in children is cerebral vision impairment (CVI) – when sight is affected by the structure or function of the brain – which accounts for between 32% and 45% of all cases of vision impairment in children (RNIB, 2015).

CVI may have no obvious cause, or it may be associated with a lack of blood supply or oxygen to the brain, head injury, meningitis and encephalitis, hydrocephalus, low blood sugar at birth, or cerebral palsy (CVI Society, 2018).

Sarah Holton, assistant UK specialist lead for children, young people and families at the RNIB, says that more than 70% of cases of severe vision impairment in the UK have an early onset in infancy.

‘But delay in diagnosis can occur, particularly if the eyes appear to look “normal”, or where poor visual responses are overshadowed by other concerns,’ she says.  

‘It’s imperative that community practitioners are aware of children with sensory impairments as they may play a key part in the identification of a vision impairment and a referral to an ophthalmologist, as well as in ensuring families have access to the right level of support from statutory and voluntary services.’

Awareness is also crucial because losing vision later on in life requires different understanding and support from that required when a child is born with an eye condition or loses vision at a very young age, says Sarah.

‘Children will experience their own level of vision as “normal”, as many will not know or initially understand anything as different, or that other people see differently. As a result, some parents say their children come to terms with living with a vision impairment more quickly than they do,’ she says.

Symptoms of vision impairment in children can range widely from only being able to perceive light and needing to use touch to access information, to having sight loss but a significant amount of useful vision.

However, the impact of a child’s sight loss on their development depends on how much support they get and their individual circumstances, such as disabilities, Sarah says: ‘Assumptions should not be made that children with a greater degree of sight loss have greater need.’

Dr Tom Pey, chief executive at the RSBC, says that children with visual impairments can face ‘profound’ challenges if their emotional wellbeing is not prioritised. ‘Post-diagnosis support can make the world of difference to a blind or visually impaired child’s future resilience and fulfilment,’ he adds.

Considerations for CPs

Support for the families of children is paramount. ‘Some families find it very difficult to cope with the news that their child has a vision impairment, and can go through a grieving process in trying to come to terms with the diagnosis,’ Sarah says.

‘Some parents are fearful about their child’s prospects and the effect that their vision impairment will have on their life chances, while others are more positive and optimistic – it varies hugely. Siblings and other family members can also be affected in both positive and negative ways.’

She also says that many parents with sight loss themselves report negative experiences in the support they receive from healthcare professionals, and may be reluctant to ask for help for fear of appearing unable to manage.

‘We would encourage community practitioners to take a positive approach, sharing in the excitement of a new baby with a blind or partially sighted parent and engaging in a solutions-based approach to overcome any issues, in the same way that they would with a sighted parent,’ Sarah says.



Clear communication


Sarah Holton of the RNIB recommends that CPs follow these tips:  

  • Use a child’s name first, so the child knows they are being spoken to, especially if they are in a group.  
  • Provide a description of what they are doing: for example, if they are performing an examination or procedure on the child.  
  • Offer any written information in a format accessible to the person: for example, via email, large print or Braille.


Identifying CVI in children

Children may have eyes that ‘look healthy’, but function as if they have visual impairment. Behaviour to look out for includes:  

  • Difficulty finding the beginning of a line or the next word when reading, or missing pictures or words on one side of a page 
  • Reaching beyond or around the object when picking it up, missing it or knocking it over  
  • Getting lost, anxious or distressed in visually complex places such as supermarkets, swimming pools or cinemas  
  • Regularly bumping into things when walking while talking  
  • Sitting closer than 30cm to the television  
  • Having difficulty selecting a toy from a full box, or clothing from a pile or a full drawer  
  • Eye movements not made independently of head movements, or not very ‘smooth’  
  • Lack of response to faces or facial expressions.

Finding solutions

As well as the eye tests for children that occur throughout the first year of life, children can be tested whenever concerns about eyesight arise (see Identifying CVI in children and Sight loss in babies, above).

At the time of diagnosis, a referral should be made at the earliest opportunity to local authority vision impairment teaching services, which can support a child from birth.

Children can also receive specialist help from a habilitation specialist with early learning through toys and play, life and independence skills such as toileting, dressing, eating and drinking, and getting around the house.

‘As a child gets older, it is natural and important for them to want and need more independence and this can be more difficult for those requiring support, for example in school by a teaching assistant, or sighted guide for mobility,’ Sarah says.

‘Striking the right balance between giving a young person an appropriate level of support to meet their needs, but also developing their own skills to be independent, is important.’

Communication is critical, and Sarah suggests some important tips for sharing information with children with sight loss (see Clear communication on opposite page). Ultimately, however, community practitioners should interact with clients with sight loss in exactly the same way they would interact with all clients, by being professional, polite and supportive of the presenting need. 


Resources  

The Sightline directory lists services for blind or partially sighted people across the UK at sightlinedirectory.org.uk
The RNIB has information on special educational needs and sight loss in all four nations at rnib.org.uk/sensupport
Practical advice and inspiration for parents can be found at rnib.org.uk/parentsguide
Run by mums, for mums, Blind Mums Connect shares information and support at blindmumsconnect.org.uk
The RSBC can help build a child’s confidence and independence at home. Go to bit.ly/RSBC_confidence

 

Image Credit | Getty 


 

References

CVI Society. (2018) What medical events are often associated with CV1? See: cvisociety.org.uk/faqs/214-what-medical-events-are-often-associated-with-cvi (accessed 1 October 2018).

Emerson E, Robertson J. (2011) The estimated prevalence of visual impairment among people with learning disabilities in the UK. See: rnib.org.uk/sites/default/files/Emerson%20report.pdf (accessed 1 October 2018).

Keil S. (2012) RNIB survery of VI services in England and Wales 2012: report for England. See: rnib.org.uk/knowledge-and-research-hub/research-reports/education-research/vi-services-england (accessed 1 October 2018).

NHS. (2018) My personal child health record. See: healthforallchildren.com/wp-downloads/79534v3.02-PCHR.pdf (accessed 10 October 2018).

Royal National Institute of Blind People. (2015). Key facts about vision impairment in children and young people. See: rnib.org.uk/key-facts-about-vision-impairment-children-and-young-people (accessed 1 October 2018).

Royal National Institute of Blind People. (2018). Cerebral visual impairment. See: rnib.org.uk/insight-online/cerebral-visual-impairment (accessed 1 October 2018).

Royal Society for Blind Children. (2018). Visually impaired children face increased risk of developing mental health problems says new research revealed at international conference. See: rsbc.org.uk/about/visually-impaired-children-face-increased-risk-of-developing-mental-health-problems-says-new (accessed 1 October 2018).

WHO. (2007) Vision 2020: the right to sight. See: who.int/blindness/Vision2020_report.pdf (accessed 1 October 2018). www.rsbc.org.uk/about/visually-impaired-children-face-increased-risk-of-developing-mental-health-problems-says-new (accessed 2 October 2018).

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