University of Hertfordshire leads study to empower people with learning disabilities to give COVID-19 vaccine consent

11 March 2021

The University of Hertfordshire is leading a Royal College of Nursing (RCN) Foundation funded study to create and evaluate a visual resource to help people with intellectual and/or learning disabilities give their consent to having the COVID-19 vaccine.

While there are numerous written materials giving the public information on the COVID-19 vaccine, there are no resources available specifically for people with learning disabilities to help them decide to have the injection. So far, over £30,000 has been awarded for the study, which will evaluate co-created digital resources in the form of wordless picture stories about the Coronavirus vaccination.

With Public Health England reporting [1] that individuals with learning disabilities are up to six times more likely to die from COVID-19, empowering this group of people to get a vaccine is as important as ever. As of last week, everyone on the GP learning disability register will be invited for a vaccination as part of priority group six, regardless of how severe their disability is.

The University of Hertfordshire researchers will co-create materials working with Beyond Words and in partnership with people who find pictures easier to understand than words, as well as nurses and carers, to ensure they resonate and are understandable. The final materials will be freely available from August 2021 and distributed widely to people with learning disabilities and people who care for them, including family and friends, paid carers, nurses, GPs, social workers and other health and care professionals.

Results of an evaluative national questionnaire and of mapping vaccine uptake among the target group in the county of Hertfordshire will be published later this year. These results will be produced in accessible formats for different audiences.

Natalie Pattison, Professor of Nursing at the University of Hertfordshire and the co-lead investigator, said: “People with learning disabilities are significantly impacted by health inequalities and recent data regarding the impact of COVID-19 has highlighted the increased vulnerabilities of these people. We are, therefore, thrilled to work with Beyond Words and the RCN Foundation to evaluate resources for people with intellectual disabilities to support them to access vaccines. We know this group of people have a low uptake of routine vaccines and are much more susceptible to severe COVID-19 symptoms, so it is really important that we think of novel ways to provide support.”

Deepa Korea, Director of the RCN Foundation, added: “We are delighted to be funding this important project which, we hope, will have a sustained impact during the COVID-19 pandemic and beyond. Given the disproportionate impact of the virus on people with intellectual disabilities, this project will play an important role in addressing existing health inequalities. We remain committed to supporting people with intellectual disabilities and their families during these challenging times, and this important project provides an innovative way of doing so.”

Nick Wright, Chief Executive of Beyond Words commented: “To ensure maximum uptake of the COVID-19 vaccine, not only must we provide information in an accessible way, but we must also acknowledge people’s feelings and anxieties. In our experience, wordless stories open up conversations that improve understanding and generate deeper engagement: “What will the vaccine mean for me? How will I feel? How will it improve my life?” We are delighted that the RCN Foundation are supporting both the co-production of this story and, through the University of Hertfordshire and Hertfordshire Partnership NHS Foundation Trust, the research to verify the power of these pictures in supporting more people to give truly informed consent”.

Find out more information about the RCN Foundation here

Find out more about Beyond Words charity here

[1] Read the Public Health England report


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