A study reveals the low quality of online information regarding visual impairment in children and adolescents

The information available online on Spanish-language websites about visual impairment in children and adolescents is seriously lacking in quality, and this poses a risk to families in terms of their expectations in relation to a health condition that is so far irreversible. A thesis on digital literacy from the Universitat Oberta de Catalunya (UOC)'s doctoral programme by Marta Lupón Bas – a member of the Faculty of Optics and Optometry at the Universitat Politècnica de Catalunya (UPC) – shows that families who use the internet to find out about visual impairment run the risk of accessing information "that is not current or accurate, or that is biased, self-serving or difficult to understand". The expert warned that this situation can lead people to "make the wrong decisions, have false beliefs or create false expectations" in relation to their children.

Lupón has explored the information on Spanish-language websites, both in Spain and in Latin America and the United States. "The quality of the information is currently low and insufficient, as is also the case for other health topics; the quality in terms of reliability and readability leaves a lot of room for improvement", warns the author of the thesis Informal care of children and adolescents with visual impairment: effects on the quality of life of their parents and analysis of websites as resources for literacy. The thesis was supervised by UOC eHealth Center researcher Manuel Armayones Ruiz and Genís Cardona Torradeflot, associate professor at the UPC.

Lupón analysed the quality of websites and proposed an index to objectively quantify this. She explained that some of the criteria she has assessed are "essential", such as knowing who the author of the information is, what sources it is based on, whether the information is up to date and whether it is suitable for the intended audience in terms of readability. "Often websites with information related to this topic do not take these criteria into account," said the author, who questioned "on what basis" some of the statements on these websites are made. "From the outset, anything we read must be called into question if we cannot determine the source of the information", she recommended.

Possible actions that could improve the situation

The author also pointed out some possible actions that could help to tackle the problem. According to her, eye care professionals, both ophthalmologists and opticians-optometrists, should be involved. "Their professional associations could raise awareness and provide information for the general public, while also focusing on creating web-based content specifically for the families affected and, perhaps, even at visually impaired children and adolescents themselves, always taking into account the criteria of reliability and readability," explained Lupón.

The parents who were interviewed for the study look for information on the internet, "but they encounter strong reticence in this regard on the part of professionals," she said. And she added that "families feel a lack in this respect: they would like eye care professionals to guide them in navigating the web." Visual impairment – moderate to severe, and blindness – has a global average prevalence of 6-7 cases per 10,000 people. According to the data available, this is also the case in Catalonia: this means that it affects around 800-900 children and adolescents.

A big impact on families, who are in unfamiliar territory

The conclusion of Lupón's study is that visual impairment has a very big impact on families, "especially prior to diagnosis and for the first few years that follow. Often, the medical cause is a rare disease, which means entering unknown territory." The families themselves have no knowledge of the condition and "they often find that the health professionals who make the diagnosis lack understanding in this area." On top of this, there is often very little that can be done to reverse the situation, there is no treatment, and most people don't know what visual impairment is or what it entails for the overall development of the child," explained the author of the thesis.

This UOC research supports Sustainable Development Goal (SDG) 3, Good Health and Well-being.

Reference document:

Marta Lupón (July, 2022), Informal care of children and adolescents with visual impairment: effects on the quality of life of their parents and analysis of websites as resources for literacy.

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