Study finds that explaining blindness is a struggle

Published: 12 January 2016 at 11:27

Eye test

Research looks at emotional problems faced by people with Retinitis Pigmentosa

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A new study shows that explaining their blindness to others is the biggest difficulty faced by people with Retinitis Pigmentosa (RP), which results in tunnel vision.

The research, carried out by academics at Anglia Ruskin University and published in the journal PLOS ONE, involved 166 people living with the inherited condition, which is the most common form of blindness amongst people of working age in the UK.

RP usually involves the loss of peripheral vision, so the ability to see fine detail with central vision is often unimpaired, but being able to move around safely can be difficult.

The researchers asked the participants about how they deal with misunderstandings because of their visual impairment and how easily they are able to explain to others what they can and cannot see.  These tasks were rated as ‘impossible’ or ‘very difficult’ by 39% of respondents, with a further 27% rating them as ‘moderately difficult’.

Dr Keziah Latham, Reader in the Department of Vision and Hearing Sciences at Anglia Ruskin University, said:

“We know a great deal about how visual impairment affects people carrying out everyday tasks, but less research has been carried out into the emotional impact.

“And until this study we knew even less about RP, which affects a much younger group of people than other forms of blindness.  We found that the biggest emotional problem faced by people with RP is communicating their vision loss to others.

“This is partly because explaining blindness is very difficult, but it is also made more difficult if other people do not have a good understanding of vision loss – perhaps thinking that ‘blind’ means unable to see anything at all, or that only central vision is affected.”

The research was supported by the charity RP Fighting Blindness, which helped with the recruitment of volunteers.

Tina Houlihan, Chief Executive at RP Fighting Blindness, said:

“We welcome these findings as the emotional aspects of living with a condition such as RP are often overlooked. 

“We are aware that many members of the public have misconceptions about visual impairment and do not realise RP does not necessarily equate to full blindness.

“We have heard about the frustration felt by some members of our patient group due to the lack of knowledge the general public has about such matters.”

The full research, which was carried out by academics from Anglia Ruskin’s Vision and Eye Research Unit, is available to read here.