New research on emotional adjustment after encephalitis

Key points:

• A team of UK researchers, including Encephalitis International’s CEO Dr Ava Easton, explored how to accurately capture experiences of emotional adjustment after encephalitis.
• Transdiagnostic cognitive behavioural therapy (T-CBT), previously tested for anxiety, can capture experiences of emotional adjustment after encephalitis.
• Future clinical trials and psychological therapy may be informed by this work.

Introduction

A study by a team of researchers from the UK, including CEO of Encephalitis International Dr Ava Easton, explored whether a novel behaviour therapy model accurately captures real-life experiences of emotional adjustment after encephalitis [1]. Emotional adjustment is crucial for ensuring positive, long-term outcomes from encephalitis.

The cognitive behaviour model

Cognitive behavioural therapy (CBT) is a type of talking therapy which is used to treat a range of mental health problems.

A different therapy model known as transdiagnostic cognitive behavioural therapy (T-CBT) seeks to understand a broader range of factors, such as the adjustment process.

The T-CBT model identifies a range of factors which collectively capture emotional adjustment post-encephalitis. These factors include:

• Experiences of threats to self-identity. This ranges from invisibility of symptoms to changing social roles as a consequence of encephalitis.
• Cognitive and behavioural responses.
• Emotional responses. This includes fear, frustration, shame, and humour.
• Post-injury contextual factors. This includes the broader social networks and support systems.

While tested for disorders such as anxiety and depression [2], T-CBT has not been tested for encephalitis. However, there has been a reported case of a person with anti-NMDAR encephalitis whose experiences of sensory overload (associated with experiences of panic), cognitive deficits, and coping, improved with T-CBT [3].

What did the researchers do?

15 survivors of encephalitis shared their experiences through public podcasts. This included six with infectious encephalitis, six with autoimmune encephalitis, and three with unknown cause for their illness; with recovery periods ranging from 3-19 years.

A direct approach to content analysis was used to assess the recovery stories. Data were collected from online podcast platforms, transcribed, and analysed using a coding framework generated from the T-CBT model.

Powerful testimonials

Throughout the podcasts, survivors highlighted the emotional journey and profound impact of encephalitis on identity, daily functioning, and relationships. Here are some of particularly striking quotes from survivors that were referenced in the paper:

• On identity: “I felt like a different person, I felt like it wasn’t me and my own body.”
• On loss of abilities: “I just couldn’t do the job. I used to do it without even thinking about it.”
• On isolation: “It was just feeling like the world was against me.”
• On the importance of family support: “They [my children] are very good at pointing out, like, mom, you sound tired. If I start to stutter or slow my speech or slur, they’re like, oh, you should have a rest now.”

Conclusions

The team found that the T-CBT model was able to broadly capture the experiences of emotional adjustment after encephalitis. As illustrated in the testimonials above, one of the most important factors was threat to self-identity.

While there was no discernible pattern between survivors of infectious vs. autoimmune encephalitis, the team did discover a major category not covered in the current T-CBT model: the impact of recovery on close others. This significant research finding can help expand the model in future applications.

Overall, this work emphasises the importance of psychological therapy as a treatment during the recovery phase of encephalitis.

To view the full paper, click here (external link).

References

1. O’Connor E, Kasinopoulou A, O’Donoghue D, Sekibo J, Morey E, Versace J, Cummins N, Pollak T, Easton A, Simblett S. “There’s a lot that’s different, but it’s still me”: exploring podcast narratives of emotional adjustment after encephalitis. Brain Inj. 2025 Apr 9:1-14. doi: 10.1080/02699052.2025.2487612. Epub ahead of print. PMID: 40202826.
2. Andersen, Philip et al. “Effectiveness of Transdiagnostic Cognitive Behaviour Therapy for Anxiety and Depression in Adults: A Systematic Review and Meta-analysis.” Behavioural and cognitive psychotherapy vol. 44,6 (2016): 673-690. doi:10.1017/S1352465816000229.
3. Meixensberger S, Tebartz van Elst L, Schweizer T, Maier SJ, Prüss H, Feige B, Denzel D, Runge K, Nickel K, Matysik M, Venhoff N, Domschke K, Urbach H, Perlov E, Endres D. Anti-N-Methyl-D-Aspartate-Receptor Encephalitis: A 10-Year Follow-Up. Front Psychiatry. 2020 May 15;11:245. doi: 10.3389/fpsyt.2020.00245. PMID: 32477169; PMCID: PMC7242611.