Ethical Issues in Participatory Action Research on Covid-appropriate Behaviour and Vaccine Hesitancy in India: A Case with Commentaries

This article starts with a case outlining ethical challenges encountered in participatory action research (PAR) on vaccine hesitancy in rural India during Covid-19. Community researchers were recruited by a not-for-profit organisation, with the aim of both discovering the reasons for vaccine hesitancy and encouraging take-up. This raised issues about the roles and responsibilities of local researchers in their own communities, where they might be blamed for adverse reactions to vaccination. They and their mentor struggled with balancing societal protection against individual rights to make choices. These themes are explored in two commentaries discussing the difficulties in balancing ethics in public health (prioritising societal benefits), social research (protecting participants from harm and respecting their rights not to be involved) and participatory research practices (maximising democratic participation and decision-making). As discussed in the first commentary, often these cohere, but tensions can arise. The second commentary also raises the issue of epistemic justice, questioning the extent to which the villagers could have a say in the design, implementation and interpretation of the research, and the dangers of not hearing the voices and arguments of people who reject vaccination. The case and commentaries highlight the complexities of PAR and additional challenges in a public health context.

Researching with Care - Participatory Health Research with Afghan Women Refugees in Germany During the Covid-19 Pandemic: A Case with Commentaries

This article comprises a short case exemplifying ethical challenges arising for a participatory researcher working with Afghan women refugees during the Covid-19 pandemic in Germany. The researcher is an Iranian-German woman, qualified as a midwife, undertaking doctoral research on refugees' access to reproductive health care. Disclosures about some women's experience of domestic violence are made, which raise ethical issues for the researcher relating to personal-professional boundaries, roles and responsibilities. Two commentaries are given on this case from participatory researchers based in Germany, UK and Austria. Both commentaries highlight the relevance of the ethics of care for participatory research and for this research in particular, which entails very close relationships between the doctoral researcher and the refugee women with whom she is researching. The first commentary analyses the research process in terms of Tronto's five phases of care, while the second illustrates the importance of caring institutions in supporting researchers working on sensitive topics.

Pandemic ethics: Rethinking rights, responsibilities and roles in social work

This article explores responses of 41 UK social workers to ethical challenges during the COVID-19 pandemic, utilising UK data from an international qualitative survey and follow-up interviews in 2020. Challenges ranged from weighing individual rights/needs against public health risks, to deciding whether to follow government/agency rules and guidance. Drawing on a narrative methodology to explore ethical agency, four broad types of response are identified: ethical confusion;ethical distress;ethical creativity and ethical learning. The article considers conditions that promote ethical creativity and learning: time and slow ethics;teamwork and co-creating the future and professional judgement and ethics work. It examines cognitive and emotional efforts required to make professional judgements in new conditions, when existing practices and procedures are unavailable, showing how the concept of 'ethics work' assists in identifying the invisible labour behind judgements and decisions in challenging circumstances. Whilst some practitioners sought clearer guidance from above, others made tailored professional ethical judgements about what would be right under particular circumstances for particular people. This capacity underpins good professional practice, and has been highlighted during the pandemic. It is important that social work post-pandemic reclaims the role of professional ethical judgement, which has been undermined by decades of managerialism and procedure-driven practice. This article looks at UK social workers' responses to the ethical challenges they faced during the COVID-19 pandemic in 2020. Ethical challenges arise when social workers find it difficult to decide what is right or wrong. This occurs in situations where the people social workers work with, and the general public, may be harmed or benefitted by their actions. Results of a survey show that some social workers were confused and distressed by the situations they faced;others managed to find creative solutions and learnt from the experience. The article discusses how social workers decided whether to do home visits when the risks of infection were high, and how they argued for some people to have more freedom to move around, for example. Working out what was right was hard work, involving a lot of thinking and emotions. This article shows it is important for social workers to be able to make decisions based on the needs of particular people in particular circumstances, and to question rules that do not fit people's needs or are unfair.

Inhalant use is associated with sleep quality and mental health during the COVID-19 pandemic

RATIONALE: Cigarette smoking and sleep quality are known to impact mental health considerably. As nicotine is a primary component of both cigarettes and electronic (e)-cigarettes, we launched a survey-based study in order to study the effects of e-cigarettes, conventional tobacco, and dual usage on mental health as well as sleep quality. We sent out this survey in the time of COVID-19 in order to assess the impact of nicotine-based inhalant use on sleep quality and mental health. We hypothesized that e-cigarette use impacts mental illnesses and sleep quality, which is exacerbated by the presence of additional stress such as a global pandemic. METHODS: We combined our established UCSD Inhalant Questionnaire with the Pittsburgh Sleep Quality Index (PSQI), Hospital Anxiety and Depression Scale (HADS), and Patient Health Questionnaire (PHQ-9). Participants were recruited through online advertisements posted to social media sites including Facebook, Craigslist, Reddit, and Twitter. Participants (n=554) were recruited in April 2020, and a subset (n=217) retook the survey in June 2020. The survey was broken up into four sections - past and current type of inhalant use (UCSD Inhalant Questionnaire), PSQI, HADS, and PHQ-9. All participants were incentivized via a weekly lottery for a gift card. RESULTS: Inhalant users reported worse sleep quality (PSQI, 6.74) when compared to non-smokers/non-vapers (PSQI, 5.72, p=0.02). Higher anxiety scores were associated with worse sleep quality (linear regression, r2=0.28, p<0.001). E-cigarette users and dual users of both e-cigarettes and conventional tobacco had higher anxiety scores (HADS anxiety;12.08 and 11.37, respectively) than non-smokers/non-vapers (7.94, p=0.028). Dual users were found to have higher depression scores relative to controls as well (HADS depression;7.42 versus 4.68, p=0.017). Sleep quality improved during the COVID pandemic from April 2020 (PSQI, 7.92) to June 2020 (PSQI, 6.10, p<0.0001). Interestingly, anxiety scores increased over the same period of time (HADS anxiety, 7.51 to 8.76, p<0.01). CONCLUSION: Our finding of diminished sleep quality in inhalant users is novel. Based on these data, we speculate that inhalant users may be more susceptible to sleep disturbances in the setting of a stressor, such as a global pandemic. Higher anxiety scores in e-cigarette and dual users, and higher depression scores in dual users, imply a direct relationship between inhalant use and mental disorders. Higher anxiety scores as the pandemic progressed may in theory reflect the lack of having an end in sight, or having loved ones affected by COVID-19.

Ageism and risk during the coronavirus pandemic

The coronavirus pandemic has laid bare societal discourses regarding age differences and stereotypes. Using sociological approaches to risk and drawing on some examples from the Australian online news media, we illustrate how risk management approaches and risk uncertainties in response to the coronavirus, have homogenised younger and older peoples, and widely positioned them in a binary generational conflict of ‘risky’ and ‘at risk’. Younger people are frequently framed as healthy, active agents: they are engaging in risky behaviours that endanger their health and that of others. In contrast, older people have been typically cast as passive and at risk: ‘the elderly’ and ‘the vulnerable elderly’. In extreme cases, older people have also been framed as burdensome and worthless. In this chapter, we examine how age was framed or ‘staged’ during COVID-19 to illustrate how ageist language and dichotomous pandemic framings - grounded on blame and shame - add to social divisions and ‘othering’, shape risk management strategies, and cloud public health messaging on risk, viral spread, and physical distancing measures. © 2021 selection and editorial matter, Deborah Lupton and Karen Willis.