Bacterial meningitis is once again in global headlines, with recent cases linked to the University of Otago in New Zealand and a fast-growing outbreak at the University of Kent in England.
Bacterial meningitis is well known as an acute, deadly illness. The World Health Organization estimates about one in six infected people will die – even with prompt medical care and antibiotic treatment.
While this frightening statistic makes headlines, less well understood is what happens to those who survive this highly contagious infectious disease.
Much of the existing research on bacterial meningitis tends to follow a similar pattern, focused on the acute phase when people are hospitalised and receiving treatment.
While this makes sense, it also bolsters the idea that bacterial meningitis is a short-term illness that is effectively dealt with by the time patients leave hospital.
This is not the case. Emerging international evidence suggests a majority of patients experience ongoing and life-altering physical, psychological and social impacts well beyond the acute treatment phase.
Our new research with people who survived bacterial meningitis is the first of its kind conducted in Aotearoa New Zealand.
With support from the Meningitis Foundation Aotearoa New Zealand, we collated exploratory survey responses from 16 adult participants, followed by in-depth interviews with ten of these people.
This allowed us to build a nuanced, personalised picture of what life after meningitis is actually like. Our findings show significant and long-lasting impacts of infection.
Ongoing impacts long after acute illness
Participants emphasised that bacterial meningitis was a long-term illness with far-reaching impacts.
Far from being “cured” at hospital discharge, participants described experiencing multiple chronic after-effects, including fatigue, difficulties with concentration, memory and emotional regulation, persistent headaches, and issues with mobility, vision and hearing.
These after-effects were permanent for some and persisted for years for others.
Ongoing symptoms had major implications for how participants were able to live their lives. They affected their ability to work and support themselves, to study and to maintain relationships with others.
In turn, this had serious downstream effects on mental health. Participants linked their experiences to anxiety, depression and suicidality. As one reflected:
I thought my life was absolutely done and dusted.
Lack of guidance and support
In the context of these life-changing impacts, participants described an absence of accurate and useful medical advice about after-effects and recovery trajectories.
This information vacuum made the adjustment to living with lasting impacts especially difficult to understand and cope with. Interviewees described feeling abandoned and did not know whether and where they could access help.
Those we interviewed were not offered mental health follow-up despite having faced a life-threatening medical diagnosis – a known risk factor for post-traumatic stress disorder.
Many described leaving hospital in shock, with no accident compensation cover and no ongoing primary care plan or specialist referral in place. One participant explained her experience like this:
When I was eventually discharged, there was no support. There was no brochure to tell me that I could go and talk to someone or a list of potential after-effects.
Reflecting the focus on acute care, participants were typically treated by healthcare providers as if they were recovered and would be ready to resume their normal activities soon.
Several participants were told by doctors to return to work or school within weeks.
This proved to be alarmingly inaccurate advice. Most of those we spoke to experienced after-effects that affected their ability to work, study and socialise for months or years.
Without access to formalised aftercare, close family and friends filled the gaps. Many participants described being discharged from hospital while unable to feed themselves, and unable to move unassisted. In these situations, support from loved ones was vital.
Our findings demonstrate that bacterial meningitis is much more than a life-threatening infection. It is an acute disease with serious, chronic after-effects which are poorly understood and often go unrecognised.
Alongside efforts to raise vaccination rates and improve symptom recognition, we need to do better by those living with the impacts of this cruel disease.
Our recommendations highlight that patients and families need realistic information and responsive support to help them adjust to life after bacterial meningitis.
Comments are closed.