Navigating responsible bio-political citizenship: Cross-country comparison of stigma in Covid-19 illness narratives in Germany, Japan, the UK and the USA.

This paper aims to further understanding of discourses of responsible bio-political citizenship during the first year of the Covid-19 pandemic. This was an interview-based qualitative study comparing experiences of 103 people who were ill with Covid for the first time across 2020 in Japan, Germany, the USA and the UK. Comparative thematic analysis explored discussion of responsibility in relation to Covid illness, experiences of social fracture and stigma, and the strategies employed to resist or mitigate stigma. This comparative analysis highlighted significant similarities across countries. We identified three mysteries of Covid illness experiences that impacted the work of navigating biopolitical citizenship. First, the mystery of how people caught Covid. There was an inherent paradox of following guidance yet nonetheless falling ill. Disclosure of Covid to minimise onward transmission was held in tension with accusations of irresponsibility. Second, the mystery of onward transmission. Uncertainty about transmission placed participants in a liminal space of potentially having caused harm to others. Third, the mystery of how long illness should last. Uncertainty about ongoing infectiousness made social re-entry difficult, particularly in instances of persistent symptoms. We demonstrate the instability of certainty in the context of new and emerging forms of biopolitical citizenship. Guidance and emerging scientific evidence sought to demystify Covid through providing certainty that could guide responsible actions, but where citizens experienced paradoxes this had the potential to exacerbate stigma.

The meaning of life prognosis disclosure for Japanese cancer patients: a qualitative study of patients' narratives.

OBJECTIVE: Recently, disclosure of cancer diagnosis is common in Japan, but significant variability in patient preference of prognostic disclosure poses difficult questions for doctors. The aim of this study was to understand the reasons for wanting or not wanting to know life prognosis and how the information was interpreted and utilized by the patients. METHODS: The study was based on narrative interviews with 42 women with breast cancer and 49 men with prostate cancer, in varying stages. A qualitative and interpretive approach was taken, combining thematic analysis with constant comparison. RESULTS: While some of the participants voluntarily asked for prognosis to prepare themselves for the end of life, others were shocked by unexpected and unilateral disclosure. Some obtained prognostic information from books and websites. Some preferred to remain unaware of life prognosis, partly because they feared it would become a self-fulfilling prophecy. DISCUSSION: The major problem underlying the practice of prognostic disclosure is the absence of mutual understanding of how such information will be utilized. These findings affirm that it should be used to empower patients to participate in the decision-making process.