ANÁLISIS E INTERPRETACIÓN DE RESULTADOS DE ENCUESTAS

All people with diabetes perceived that their diabetes has or would have some sort of effect on their sight. For example, some people with diabetes believed that their diabetes may lead to vision loss while others were not sure what would be the implications of diabetes on their sight:

“I think if the diabetes keeps high that could affect the eye could like go blind, blindness or something like that. So, I’ve got to keep my diet keep controlling my diet, and for myself probably try to do exercise and take the medicine on time.” (Yazan, 40, South Asian, R0)

“I went for a routine blood test. Just really at normal testing with the doctor. It must be 5 years plus now. The doctor said you have the type 2 version. He prescribed tablets and advised me to look after what I am eating otherwise it could cause blindness and other parts of your body can get into trouble with it such as gangrene and things like this. So far it is controlled with tablets.” (George, 70, White British, R1)

Others, such as Samina, believed that diabetes could lead to different complications other than in relation to their eyes, such as stroke, hypertension, and heart problems, which she believes may result in vision loss:

“Yes he (Doctor) said to keep controlling blood sugar, you got to look after yourself. He mentioned things like you just got to make sure that you got to look after yourself right, otherwise you could have problems with things like if people don't look after themselves they could have high blood pressure, could have stroke, could have heart trouble, there could be other

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complications. It could make you go blind and stuff like that. The blood pressure could make you blind so can your diabetes can make you blind so it’s like important that you look after yourself.” (Samina, 58, South Asian, R1)

Some people with diabetes were unclear about diabetes complications. They believed that diabetes could lead to glaucoma and blindness:

“Probably diabetes can affect my sight I would've thought, gives you glaucoma, isn’t it, can send people blind. I know you have to look at your feet very well.” (Ronald, 57, White British, R2)

In comparison, Health Care Professionals seemed divided regarding patient’s knowledge of diabetes complications. General Practitioners believed that patients are aware of diabetes complications and that individuals were aware that diabetes causes blindness when they present with complications:

“Everyone with diabetes knows that it causes blindness, all of them know.” (Fawzi, GP, South Asian)

However, the ophthalmologists argued that symptomless patients may not be aware of the full impact of diabetes, particularly those who have good visual acuity:

“I think the majority understand, particularly those that have had some early changes and some visual changes. They then fully understand what the implications are. But for those that have perfectly normal vision I am not sure some of them understands the impact of the changes are likely to permanent once they get them.” (Andy, Ophthalmologist, White British)

Although it was clear that many people with diabetes were aware that diabetes can lead to changes in their eyes, some of them were unaware that these changes could lead to permanent vision loss. Furthermore, they tended to

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believe that their doctor or ophthalmologist would treat any potential eye problems and effectively cure them of the problem:

“Well, I don’t have problems so far. Should things changed, the doctors would sort it out for me.” (Younis, 55, South Asian, R2)

“Perhaps because everything was normal to me even when I had changes it was improved after some time. So, there is always a way to get thing right for us. You guys are doing a great job in the hospital.” (Joyce, 64, White British, R1)

Despite the varied understanding apparent in the people with diabetes who took part in this study, among the Health Care Professionals there was consensus that all people with diabetic retinopathy would be informed that this may lead to non-reversible damage in the retinae due to high levels of blood glucose. Thus, the Health Care Professionals in this study were eager to point out that all people with diabetes were told how they may avoid the progression to sight- threatening diabetic retinopathy by adhering to good diabetes self- management:

“I normally say that the diabetes has damaged their retinae with high sugars and that this is non-reversible damage, but then we can stop further progression with good control. I think they understand that there is something going on related to their diabetes I think most of them understand that quite clearly, but I am not sure what they understand or that they understand what we mean by retinopathy. I think the majority of them don’t understand the meaning of it.” (Kate, Screener, White British)

However, it was also clear that health professionals generally perceived “educated people” and those who had regular attendance at their appointments at Hospital Eye Services to have better understanding of their own condition. As a result, these patients were far more likely to be aware that diabetes affects the eye:

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“I think the more educated people or people that have been coming to clinic more often have an understanding that diabetes affects the eyes. I think that a lot of them would appreciate that it is kind of at the back of the eye rather than at the front of the eye, particularly if they get the hang of what dilating diabetic retinopathy drops are for and you know what we do when we examined them but I think they have very limited knowledge about what actually goes on at the back of the eye.” (Andy, Ophthalmologist, White British)

However, an individual’s level of education was not necessarily linked to good knowledge or understanding of diabetes among the people with diabetes in this study. For example, people with diabetes who had a higher degree (masters or PhD), or further education (Diploma), provided a range of understanding which could be perceived as less knowledgeable that those with compulsory education (O Level/GCSE) or no qualifications (see participants characteristics in Table 6.2). For example, as mentioned in a previous quote, type 2 diabetes was described by Bara, who is a senior lecturer at a university, as the “simplest

type, safe side one, and normal average one”. Rather than their educational

background, it appeared that individuals who had existing symptoms or eye complications provided explanations that were closer to those provided by a range of Health Care Professionals than those who did not have symptoms or eye complications:

“He mentioned complications especially when I had the bleed. I mean that was a bit of a shock and with the diabetes that is what usually happens if you’re under control. It is the diabetes out of control, too many high blood sugars, what happened I was told the blood vessel behind the eye starts swelling up and suddenly pops.” (Keith, 59, White British, R3)

Health Care Professionals also perceived people with diabetes who have visible eye complications or changes in their vision as having better understanding of their own eye health status and the risks of disease progression, which was in contrast to symptomless patients:

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“I think the majority understand, particularly those that have had some early changes and some visual changes they then fully understand what the implications are.” (Andy, Ophthalmologist, White British)

It was also the case that people with diabetes who had existing eye complications or advanced levels of retinopathy believed that everyone with diabetes to be at risk. Therefore, perhaps unsurprisingly, they believed that the diabetic eye screening programme is beneficial for all people with diabetes regardless of their level of risk. This view was inevitably influenced by their past experience:

“I think anyone with diabetes should have eye screening definitely every year. I think they are at risk if they have got diabetes anyway, aren’t they, everyone with diabetes should be screened.” (Claire, 45, White British, R3)

In contrast, symptomless individuals perceived diabetic eye screening to be more effective to those who are high risk because they would be more closely monitored:

“I think the most benefits will be for patients who are at high risk as they would be monitored more closely, it would prevent any problem with the eye.” (Abdulla, 47, South Asian, R0)