What should HCPs know to support wellbeing after encephalitis?

What should health care professionals know to support wellbeing after encephalitis?

By Dr Andrea Kusec, Nuffield Department of Clinical Neurosciences, University of Oxford

Researchers at the University of Oxford, led by Dr Andrea Kusec, have developed a new training programme for healthcare professionals to better understand and support psychological effects of brain injury, including those who had their brain injury from encephalitis.

After brain injury, there are a range of psychological effects like changes to attention, memory and planning abilities, fatigue, and speech and communication. The emotional impact of brain injury also leads to increases in depression and anxiety. In talking therapy, changes to thinking abilities, fatigue, and communication can all impact on how therapy is delivered, and therapists may not have worked with those with brain injury before, making it harder for those with encephalitis-induced brain injury to benefit from this type of care.

The Neuro-Wellbeing project, which is funded by the John Fell Fund and the Public & Community Engagement in Research grant, aims to address this gap. The Neuro-Wellbeing project aimed to co-design a training programme for health care professionals to learn how to adapt talking therapies for those with a range of brain injuries including from encephalitis.

Involvement from those with encephalitis

For this study, the researchers completed a series of one-to-one interviews and a series of in-person and online co-design workshops from May 2025 – January 2026. In the interviews, participants were asked to share their experience of receiving mental health and wellbeing support, including experience with talking therapy, after brain injury. In co-design workshops, participants were presented with a set of potential topics to train health care professionals on, based on data from interviews. Participants were asked to rank which topics were the most important to train health care professionals on and make suggestions on how to train them.

Of the 42 participants who took part in the Neuro-Wellbeing co-design project, 13 (30.9%) had encephalitis-induced brain injury. Of the eight family members who took part, four were family members who were providing care for those with encephalitis-induced brain injury.

Neuro-Wellbeing received over 70 expressions of interest from those living with the effects of encephalitis and family members, indicating the huge interest in psychology-focused research after encephalitis-induced brain injury.

What do those with encephalitis-induced brain injury have to say?

In the co-design workshops, those living with encephalitis agreed that ‘Empathy and Warmth’ was the most important topic to train health care professionals on when providing psychological care. This was closely followed by giving people with encephalitis ‘Time and Patience’ in appointments and scheduling, and in communicating their needs and discussing the emotional impact of encephalitis.

Other important topics to train healthcare professionals on was understanding that brain injury from encephalitis can be a ‘Long-term Condition’ that leads to potentially lifelong adjustment that can cause an ‘Identity Change’. It was viewed important for therapists to know how to adapt talking therapies for any changes in thinking skills, fatigue, and communication, and provide routes for peer support from others who have had a brain injury and facilitate empowerment in daily lives of those with brain injury.

Those with encephalitis-induced brain injury also wanted to emphasise in the training programme how rare their condition was and how easy it was to misdiagnose due to healthcare professionals being unfamiliar with encephalitis.

Future of the Training Programme

The team piloted the training programme in March 2026 with a range of healthcare professionals both with and without experience of brain injury.

The Neuro-Wellbeing training programme is now being finalised based on this feedback. The team aims to have the Neuro-Wellbeing training programme publicly available by the end of this year.

Any questions can be directed to Dr Andrea Kusec at andrea.kusec@ndcn.ox.ac.uk