"Families are calling upon health professionals to assist them in finding information about visual impairment on the internet"

 

Marta Lupón Bas, PhD at the UOC and a member of the Faculty of Optics and Optometry at the Universitat Politècnica de Catalunya, has recently presented her 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 increasing awareness" at the UOC. In the interview that follows, Lupón discusses the main conclusions arising from her analysis of the quality of information on visually impairment on the internet. In her thesis, supervised by the eHealth Center researcher Dr Manuel Armayones Ruiz and Dr Genís Cardona Torradeflot within the UOC's doctoral programme on the Information and Knowledge Society, Lupón sustains that the current situation represents a cause for concern and that families are appealing for more support to obtain information that is useful, up-to-date and reliable, and that health professionals should take a leading role in this matter.

 

Marta Lupón Bas, PhD at the UOC and a member of the Faculty of Optics and Optometry at the Universitat Politècnica de Catalunya, has recently presented her 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 increasing awareness" at the UOC. In the interview that follows, Lupón discusses the main conclusions arising from her analysis of the quality of information on visually impairment on the internet. In her thesis, supervised by the eHealth Center researcher Dr Manuel Armayones Ruiz and Dr Genís Cardona Torradeflot within the UOC's doctoral programme on the Information and Knowledge Society, Lupón sustains that the current situation represents a cause for concern and that families are appealing for more support to obtain information that is useful, up-to-date and reliable, and that health professionals should take a leading role in this matter.

First of all, it should be noted that we are talking about moderate to severe visual impairment and blindness. Worldwide, the average rate of prevalence is between 6 and 7 cases per 10,000, i.e. it is low. In the case of Catalonia, according to the data we have, and this is not easy to obtain, it is a similar figure: this means that it affects around 800-900 children and adolescents.

Yes, in terms of prevalence.

The causes can vary greatly: often it results from a genetic alteration, but it can also have a neurological or structural origin (in cases where there has been some kind of impediment during the formation of the foetus), or it can result from infection, trauma, etc. In socio-economic terms, Western countries have more sophisticated detection techniques at their disposal, which allows for a higher diagnosis of hereditary or neurological diseases than in less developed countries, where more causes are reported because they simply don't have the resources to implement primary prevention (avoidance) and/or secondary prevention (early detection or treatment) strategies.

Based on my work, the conclusion is that it has a major impact, especially both prior to diagnosis and for the first few years that follow. Often, the medical cause is a minority disease, which means entering unknown territory. The families may never have heard of it, but often even the healthcare professionals themselves, who originally made the diagnosis, are at a loss as to how to proceed. 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. There is very little awareness on the issue. There are generally two standpoints: either a person can see or they can't. And so there is a lack of understanding in terms of all the nuances and implications of visual impairment, for example, a child may see relatively well at a short distance but have difficulties seeing obstacles in the school playground. The emotional impact derives not only from what could be called a failure to meet expectations (no one expects their child to deviate from what we label as "normal") but also, in addition to the child's pain and suffering, families find themselves having to constantly explain and clarify what their child is experiencing. Such is the case at school and during extracurricular activities, where families have to constantly explain to teachers, monitors and everyone else who interacts with their child in some way what it is and what it means, year after year. They also have to make adjustments to their family dynamic, work and other aspects of everyday life. I have called the main theme of my qualitative analysis "the burden they have to shoulder" to reflect the permanent responsibility that they express feeling, which goes beyond the normal responsibilities of parenthood.

These would include moderate to severe visual impairments, or blindness, which basically means that there is no treatment, and that despite the use of assistive devices (glasses or other systems), the improvement in the level of visual acuity and/or the visual field achieved is very low, which places limitations on both the activity and the participation of people with this type of impairment. This is what we mean by visual impairment. Whereas myopia, for example, can be compensated for by wearing glasses... That's not what we're talking about!

At present, there are no real solutions for visual impairments. Yes, research is being carried out, as well as gene therapy and medical advances, but apart from that, the fact of the matter is that chronic conditions are irreversible. So, from a medical point of view, the answer is that "nothing can be done". And although families are aware of this, they feel that they are not provided with enough help, information, support or empathy in the process. They are basically saying: "We need more support because our situation is different to that of other families. We appreciate that nothing can be done, but that doesn't mean we don't need guidance and understanding along the way, so we're not left to suddenly deal with it all on our own," and this is where the public administration needs to come into play as well.

I have analysed the quality of websites featuring information related to visual impairment in children and young people, and have proposed an indicator to quantify it objectively. The finding is that the quality is currently low, insufficient, as is also the case for other health issues. Quality in terms of reliability and readability can be greatly improved. Some of the criteria I have evaluated are essential, such as: Who is the author of the information? What sources is it based on? Is the information up to date and does it have adequate readability characteristics for the target audience? Often websites with information related to the subject do not take these criteria into account. So, when statements are made, on what basis are they made? From the outset, anything we read must be put into question if we cannot determine the source of the information. The risks for families who seek to obtain information through this channel are that they will come across information that is not up to date or accurate, or that is biased, self-serving or difficult to understand, leading to them making the wrong decisions, having false beliefs or creating false expectations.

In my opinion, the people who should be involved are eye care professionals: ophthalmologists, opticians and optometrists. 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. The parents I have interviewed seek further information on the internet, but are met with an unwillingness on the part of the professionals to provide it. Families feel a lack in this respect: they would like visual healthcare professionals to guide them and accompany them in navigating the web. For families, this is a must.

Yes, only websites in Spanish, but not only from Spain. While the majority of the sites are from Spain, in terms of percentages, the second most abundant come from the USA and are aimed at the Latin American population.

From what parents have reported in interviews, I don't think so, but I should say that I haven't interviewed the professionals in question, so I can't give a definitive answer.

I had already completed a master's degree at the UOC and it was a good experience. The online format allowed me to regulate my own time. For me, my work and family mean that following an in-person programme would be impossible: I have a full time job, which I love, as well as a large family. The way the UOC allows me to manage my own time plays greatly in my favour and having to set my own goals does not worry me in the slightest. Plus, nowadays, thanks to technology, it is incredibly easy to stay in contact with my thesis supervisors. And, what's more, by its very nature the doctoral programme entails another way of working, which is a lot more autonomous.

As an eye care professional I believe that my evaluation should not be restricted to a person's eyes, I also have to get to know their behaviour in relation to visual health, their needs, identify their knowledge, beliefs and expectations regarding, for example, their refractive status or the treatment I propose, and, in short, to try to ensure that what I do as a professional improves their everyday quality of life. The underlying aim of my thesis is to develop a humanistic approach to people who care for the visually impaired based on the areas of knowledge in which I have the greatest expertise.

 

UOC R&I

The UOC's research and innovation (R&I) is helping overcome pressing challenges faced by global societies in the 21st century, by studying interactions between technology and human & social sciences with a specific focus on the network society, e-learning and e-health.

The UOC's research is conducted by over 500 researchers and 51 research groups distributed between the university's seven faculties, the E-learning Research programme, and two research centres: the Internet Interdisciplinary Institute (IN3) and the eHealth Center (eHC).

The University also cultivates online learning innovations at its eLearning Innovation Center (eLinC), as well as UOC community entrepreneurship and knowledge transfer via the Hubbik platform.

The United Nations' 2030 Agenda for Sustainable Development and open knowledge serve as strategic pillars for the UOC's teaching, research and innovation. More information: research.uoc.edu #UOC25years