In this blog, we interviewed Professor Shahina Pardhan, Director of the Vision and Eye Research Institute (VERI) at Anglia Ruskin University, who discusses the urgent need to address the high statistics of diabetic-related blindness in Peterborough, and the development of a video training programme (for patients who cannot read or write) to improve awareness of the risk of diabetic complications including diabetes-related blindness for the South Asian community.
Please introduce your work and research interests
My name is Shahina Pardhan and I am the Director of the Vision and Eye Research Institute (VERI) at Anglia Ruskin University.
One of my current areas of research is diabetic retinopathy¹.
¹Diabetic retinopathy is a complication of diabetes, caused by high blood sugar levels damaging the back of the eye (retina). It can cause blindness if left undiagnosed and untreated.
I have found that South Asian and Black communities tend to have, not only a higher risk of diabetes, but also a higher risk of diabetic retinopathy. Retinopathy blindness can result from uncontrolled diabetes, or if you haven't been attending retinal screening, which is something you should do every year.
When I was working at the University of Bradford, we found from our research that the risk of blindness was so much higher in South Asians. And when we modelled our data, we found that for the same level of sight-threatening retinopathy, Asians were 12 and a half years younger, or they had diabetes that was of 12 and a half years lower duration.
Why is there a higher risk of diabetic-related retinopathy within the South Asian community?
We picked up on a lot of barriers that prevented South Asian people from attending retinal appointments and making changes to their lifestyle. Part of our work in Peterborough, which had one of the highest prevalence of diabetic-related-blindness in the UK, was to try and find out what these barriers were. We interviewed a diverse range of people from different demographics, such as age, gender and levels of literacy. We found that those who were at the highest risk of blindness, were least aware of how to control diabetes. People were not aware that they needed to attend retinal screenings and nor were they sure about how much exercise they should do, what constitutes a good diet, and other changes they may need to make in their lifestyles.
There are national diabetic training programmes such as DESMOND (Diabetes Education and Self Management for Ongoing and Newly Diagnosed) and DAFNE (Dose-Adjustment for Normal Eating). However, we found that the uptake of these programmes is very low. We found that some South Asian people- especially those who have a very high risk of blindness- have lower awareness of good diabetic control and diabetic complications, and also of key issues such as how to deal with missed appointments. They also reported language barriers. Some people did not understand the distinction between diabetic retinal screening and general eye examination appointments at their high street optometrists, and others believed that if they attended they might need to buy spectacles. I am sure if they (or their family members) were aware that the timely detection of retinopathy reduces the risk of blindness by 60 to 90%, they would prioritise these appointments.
What did you do to improve awareness of diabetes within the South Asian community?
To improve awareness and ensure inclusion of people with low levels of literacy, we developed video-based interventions where we produced a series of training videos that centred around different themes: ‘What is diabetes?’, 'What does good control of diabetes look like?’, ‘What is a good diet?’ , ‘How much physical activity should you do?’, and also ‘What kind of complications are caused by diabetes?’ which includes blindness, and how to reduce the risk of diabetes-related blindness.
We have developed these video training programs in six different languages, including Hindi, Urdu, Arabic, Nepali, Bengali and English. We have taken these videos to grass-root levels, such as community centres, mosques and temples. So far, we have delivered these sessions to approximately 21 different centres in the UK - including Cambridge and Peterborough. The training programme has reached approximately 16,000 people. I have also been invited to discuss diabetes and the risk of diabetic-related blindness on numerous radio programmes, as part of an ITV programme, and salaam radio which is a community radio programme in Peterborough.
We have also developed various programmes in Nepal, India, Thailand, and in China. In doing so, we have reached over 110,000 individuals, not just in terms of improving awareness, but also developing new innovative ways of working with people. In Nepal and India, doctors now train patients when they are first diagnosed. This has made a huge difference. Another example of our work in India- where we found lower engagement by people who needed treatment- was by using text reminders for their appointments and using one-to-one counselling in order to address their anxiety levels and any concerns that they may have. These interventions have increased the uptake of healthcare and reduced the risk of blindness.
Our next step is to consider ways to make the training more universal. For instance, we need to find ways to reach the carers, family members involved, but more importantly, how do we actually get the children who are at risk involved in this as well?
It is really important, not just for the children to be more aware of the problems with diabetes that their parents may be suffering from, but also for them to avoid getting diabetes in the first place. By making these changes in diet and other aspects of lifestyle from an early age, we can prevent this. I also want to reduce the high statistics in diabetic-related blindness in the Peterborough area. We can only do this if we work together and use community champions to drive home the message.
As you can see, we have done a lot of work with the South Asian community, which has been developing ever since I was at University of Bradford. Recently, we have started to look at the black community in the UK and understand what barriers are causing a higher risk in retinopathy. By assessing these barriers, we want to understand where there are gaps in awareness. We are aware that there will be differences between African black communities and Caribbean black communities, such as differences in diet. We have now finished a project where we have been looking at what the different black communities are doing to control their diabetes, and what they know. Our next step is to produce culturally appropriate training resources to dispel certain myths about diabetes. We are also looking at expanding our international work overseas to Mexico, Bangladesh and parts of Africa.
For more information on Professor Shahina Pardhan’s work on diabetic retinopathy awareness and prevention, find more on the programme here.