Our CEO Dr Ava Easton's research provides a unique insight into the experiences of those affected by encephalitis, sharing the rich, perceptive, and often powerful, narratives of survivors and family members. It shows how listening to patient and family narratives can help us to understand how they make sense of what has happened to them, and also help professionals better understand and engage with them in practice. 

The Role of Written Narratives in the Recovery of People Affected by Encephalitis
Dr Ava Easton, Encephalitis Society 2005-2012

This study explored the role of written narratives in the recovery of people affected by encephalitis, examining the motivations of readers and writers and the impact upon them. The aim of the study was to understand the purpose and meaning of post-encephalitis narratives for those who read and write them; to explore the impact of these stories upon both authors and readers; to establish in what way (if any) these stories contribute to people’s recovery, and their relationships with professionals.

The study was a mixed methods study incorporating a literature review, a quantitative element presenting the findings of a self-report postal questionnaire returned by 406 people, and semi-structured qualitative interviews with 21 respondents.

Participants in the study were those directly affected by encephalitis and family members of people affected. The study found that the experiences of people post-encephalitis are,in many cases, life-changing and complex.

Narrative use occurs at both personal and collective levels, helping people to better understand their condition, make sense of and compare their experiences with those of others; and reduce feelings of isolation and loneliness by embracing a sense of belonging. Narratives and people’s experiences of them were, however sensitive to context: temporality, memory and gender were key variables. Narratives, however, are not for everyone and for some people their use could cause anxiety and distress.

The study concluded that narratives are an important tool in the recovery of many, but not all people affected by encephalitis, including relatives of people affected. Narratives can also be used by professionals to better understand the experiences of their patients, reflect upon practice, and provide better patient-oriented services.

Watch this video to hear Dr Ava Easton chat about her book... 

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June is Encephalitis Research Month.

And to celebrate, The Big Give is offering to DOUBLE every donation we receive this month - so for every £1 that is donated, we will receive another £1 on top.

Any money raised will go towards our Encephalitis Research Month appeal and projects which support researchers around the world.

If you would like to double your donation to the Encephalitis Society, visit the Big Give website.

Double your Donation

How will my donation support encephalitis research?

Your donation during Encephalitis Research Month will go towards five research projects which will help health professionals learn more about the disease - benefitting patients through improved diagnosis and timely treatment.

The projects include:

Seed funding

Our seed funding project gives researchers – particularly those from resource-limited settings – the opportunity to launch pilot studies into different aspects of encephalitis. Since its launch in 2019, we have supported projects in Cameroon, Brazil, Senegal, Uganda, and India, among other countries.

Research exchange projects

We strongly believe in supporting the next generation of researchers. And given the global burden of encephalitis, we offer research exchanges between researchers from low-and-middle income countries and UK centres of excellence.

Academic clinical fellowship

Your donation will help us fund one Academic Clinical Fellowship every three years. These junior researchers will split their time working with patients (75%) and obtaining research experience (25%). This fellowship is a springboard towards a clinical academic career in encephalitis.

Medical Research Council (MRC) fellowship

In this brand new and exciting development, we are working with the MRC to offer a jointly-funded clinical research training fellowship. We will support one clinical research fellow to undertake UK-based research project that contributes to improving the diagnosis, treatment, or rehabilitation of patients.

American Brain Foundation (ABF)

We are contributing to the ABF’s $10m, multi-year funding initiative which is aiming to understand neuroinflammation as an underlying mechanism of brain disease. Neuroinflammation is a primary contributor to encephalitis and can affect people at all stages of life.