Could survivor’s guilt be a lasting impact for patients recovering from COVID-19?

Research nurses say some patients experience anxiety and guilt after discharge

Research nurses describe how some patients report anxiety and feelings of guilt after discharge from hospital

Feelings of anxiety can affect discharged COVID-19 patients Picture: iStock

Since the early days of the COVID-19 pandemic, the UK government has prioritised research into effective treatments.

Studies were under way in record time. And as two research nurses – one normally working in oncology and the second a senior nurse manager with cardiology research experience – we have responded to the crisis by contributing to the set up and delivery of COVID-19 studies within our trust, Leeds Teaching Hospitals NHS Trust.

As part of one trial, six patients were followed up after discharge by telephone to identify continuing symptoms. All patients reported an improvement in symptoms, during follow-ups, although some had ongoing respiratory problems.

And what was striking for us was the psychological impact of COVID-19 on these patients.

The patients also reported feelings of disbelief in their recovery, believing that being part of the clinical trial had saved their life. One patient told of her gratitude for being approached for the trial, strongly believing she would not have survived otherwise. Of the five patients followed up (one patient sadly subsequently died), four questioned why they had survived when so many had died. They also experienced levels of anxiety following discharge, with some reporting being too anxious to leave their house, meet other people or attend hospital.

Survivor guilt in the context of a pandemic

Though this is only a small number of patients, and doesn't describe a robust research methodology, it’s worth considering whether these patients are experiencing a form of anxiety, such as survivor guilt.

Survivor guilt is a well-documented phenomenon in trauma and natural disasters. First identified in the 1960s, it is a significant symptom of post-traumatic stress disorder (PTSD) and is defined as a mental health condition occurring when a person believes they have done something wrong by surviving a traumatic event when others did not.

According to the charity Mind, other symptoms of PTSD can include:

  • Reliving aspects of what happened, including flashbacks, intrusive thoughts or images.
  • Alertness (hypervigilance) or feeling on edge.
  • Avoiding feelings or memories.

Studies on disaster mental health have noted severe effects on the population’s mental status, such as high incidence rates of PTSD, major depression and generalised anxiety disorders. After the SARS pandemic of 2002, studies showed that stress, anxiety and stigmatisation were commonplace among people surviving the infection.

The significance of survivor’s guilt in the context of a pandemic is under-reported. However, within the context of COVID-19, with significant death rates worldwide, reports of survivor guilt are perhaps unsurprising.

Should COVID-19 survivors be routinely assessed for mental health problems?

Yet, as experienced research nurses working in cancer research and acute cardiology, where patients receive life-saving and life-extending experimental trial therapies and drugs, the belief of patients that being part of a clinical trial played a significant role in their survival is not something we have routinely encountered before.

For us, it raises the question of potential longer-term mental health consequences and whether patients who have recovered from COVID-19 should be routinely assessed for survivor guilt, PTSD and other mental health issues post-discharge.

We still know little about the short and longer-term psychological impact of COVID-19 on patients. It is known that nearly one quarter of intensive care unit survivors develop PTSD, with the amount of sedation received during ventilation being an identified risk factor.

Clinicians have been hesitant to intubate and ventilate patients with COVID-19 due to poorer outcomes, which poses another question: does sedation play a part in PTSD or survivor guilt in these patients?

Treating the psychological impact of COVID-19

Numerous studies are under way to investigate the psychological effects of COVID-19. However, we believe specific research is needed to understand the extent of possible survivor guilt in patients who have recovered from COVID-19, and how nurses can support patients effectively. Further research may help to identify populations at higher risk of developing mental health problems during a pandemic, which could help prepare a response in case of similar crises in future.

In the case of trials, most of our follow-up encounters with patients are brief and usually focus on any lingering problems from the trial medication or intervention. But as nurses, we know it is crucial to make every contact count and a trial follow-up could be a key opportunity to provide holistic care by assessing and delivering psychological support for patients who have recovered from COVID-19.

The nursing community as a whole aims to take a holistic approach when delivering care, ensuring that rather than only treating physical symptoms, we also attend to the psychological, spiritual and social needs of our patients.

In the forthcoming months, the wider nursing workforce is likely to come across instances of survivor guilt. Understanding the signs and symptoms is an important starting point to help nurses to support and signpost patients to gaining further help.

View our COVID-19 resource centre

Further information

Heather Iles-Smith is head of nursing research and innovation at Leeds Teaching Hospitals NHS Trust and honorary clinical associate professor at the University of Leeds

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