Volunteer peer educators raise awareness of organ donation within South Asian communities
Since 2014, Kidney Research UK has used volunteer peer educators of different faiths to raise awareness of kidney health and the importance of organ donation within South Asian communities in Edinburgh and Glasgow.
There is an imbalance between the need for organ transplants in South Asian communities in Scotland and the availability of matching organs. This results in healthcare inequalities. Kidney disease is intrinsically linked to health inequalities. High blood pressure and diabetes are the 2 most common causes of kidney failure and there is evidence of a higher prevalence of these conditions, as well as more severe chronic kidney disease in South Asian populations (Hull S et al, 2011, The relationship of ethnicity to the prevalence and management of hypertension and associated chronic kidney disease, BMC Nephrol, 12:41).
As kidney disease progresses, people from South Asian communities are 3 to 5 times more likely to start dialysis than people from Caucasian backgrounds. (Roderick PJ et al, 1996, The need and demand for renal replacement therapy in ethnic minorities in England, J Epidemiol Community Health, 50(3): 334-9)
We estimate that over 250,000 people in Scotland suffer from chronic kidney disease and some patients go into kidney failure with no prior diagnosis of kidney problems, hence it is known as a silent killer. Therefore it is even more important to improve awareness among those who are at greater risk.
The peer educator programme was initially funded by the Scottish Government for 2 years and started in Glasgow. It has since spread across the Central Belt. Volunteers from Sikh, Hindu and Muslim backgrounds are trained to deliver information about kidney health and kidney disease, and about deceased and living organ donation.
Throughout the past 9 years peer educators visited schools, hospitals, community centres, meena bazars, Glasgow and Edinburgh Melas and faith institutions. They gave presentations at public events and parliamentary sessions.
In March 2021, Scotland changed to an "opt-out" system for organ donation, making it even more important that people were aware that their faith and beliefs and choice about donation can be recorded on the organ donor register. The pandemic presented new challenges over how to spread awareness at this time. The peer educator team used technology to overcome lockdown restrictions and share information about the needs of local communities with healthcare workers. We held 13 webinars for Muslim, Hindu and Sikh communities to discuss organ donation and how to maintain good kidney health, with invited speakers from Scottish Government, NHS Blood and Transplant, community members, transplant kidney patients and faith leaders.
The peer educators worked with NHS Blood and Transplant and Living Donation Scotland to hold webinars with the families of people who had donated and received kidneys. The families explained the procedures and described the benefits and ease of the living donor process. Recordings of the webinars were shared on the Kidney Research UK website and YouTube channel and shared with community groups.
The peer educators took part in focus groups with community members, clinicians, doctors, faith leaders and members of the Scottish Government implementation team to update the NHS Blood and Transplant (Healthier Scotland) faith guides, leaflets and resources on organ and tissue donation. These were translated into different languages and placed on the Scottish Government Organ Donation website.
The peer educators have also taken up many opportunities to discuss and have open conversations with the community members on the health disparities and organ donation over the years. Media coverage through local community radio stations (Awaz FM and Radio Ramadan) and websites including Interfaith Scotland and Asian Voices has helped to raise awareness. The peer educators have taken part in talk shows in English, Urdu, Hindi and Punjabi highlighting the need for organ donors within their communities.
Findings and learning
More culturally appropriate information helps people in South Asian communities recognise the signs of kidney disease and make informed choices about donation.
Through the work of the volunteers, we aimed to prevent further decline of people's ill health, and to improve understanding about the importance of organ donation to save lives within these communities. Post pandemic working with the communities and building trust and friendships has resulted in positive outcomes. Hosting stalls and having conversations with members of the public has helped people make positive decisions about organ donation. Building and maintaining trust and good relationships with faith and community leaders has been key to the impact of the peer educators' work.
We captured data on age, ethnicity, what information communities received, including free resources such as DVDs, leaflets and organ donation register sign-up forms. This was used to collate the number of people who were spoken to at events. The number of people who registered as a donor at community events was also recorded.
The peer educators have championed the cause of equality of access to information for all faith, cultural and community groups to understand organ donation. Over the past 10 years, peer educator volunteers have participated in more than 200 events in Glasgow, Edinburgh and surrounding areas. By hosting stalls and speaking at local schools, community centres, council events and hospitals, they have engaged with 10,341 people. In total they have encouraged more than 1,185 people to record their decision on the NHS organ donor register. In the event of their death, organs from a deceased donor can save up to 9 lives, so the potential is huge.
The 13 webinars hosted during the pandemic for the South Asian communities on kidney health and organ donation reached 1,393 community members online.
The participants were pleased with the outcomes of the webinars and the discussions that were held. We catered for their needs when we hosted multilingual webinars in Hindi, Urdu and Punjabi.
Community members could have benefitted from training on how to use Zoom and MS Teams: how to log on, use the chat function, ask questions and so on. The online platforms were quite technical for first generation ethnic minority community members who don't have basic IT skills. This meant we had to speak to the community members via phone calls and video calls, so they understood the set up and how to log on. We shared information through WhatsApp, Facebook and social media groups within the ethnic minority group forums. During the pandemic social media helped push the message through but we felt we could have greater outreach if we had support from larger organisations who have larger outreach and followers.
It would have been easier to use social media tools if there was a public training tool to use Teams or Zoom for any questions that couldn't be found online. It was a lot of trial and error and, with many staff on furlough or made redundant, it was difficult to discuss any troubleshooting questions as most of these platform hosts are international and based in the USA and China.
Actions and impact
The volume and frequency of the peer educators' media activity, with features and interviews in different languages in broadcast, online and print media, has meant that their work and messages have reached many more thousands of people from the South Asian community.
After each webinar we asked attendees for ways to improve the information people receive about organ donation. Many attendees recorded their decision following the webinar. Opt-ins from South Asian communities have increased by 10% following Scottish Government awareness raising campaigns. More people are aware about the choices they have around organ and tissue donation, and have the information they need to make an informed decision.
We are continuing with the awareness events and outreach work within the South Asian ethnic minority communities on the change of law and highlighting the importance of informing close family and friends of the choice on organ donation. Our peer educators continue to raise awareness of living donation and dispel myths and misconceptions around donation.
Meanwhile, we are calling for more awareness programmes on kidney disease and national screening and identification programmes within primary care to prevent the progression of chronic kidney disease.
Policy Lead (Scotland), Kidney Research UK
Image credit: Bushra Riaz / Kidney Research UK