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Narrative complexity in the time of COVID-19

2021; Elsevier BV; Volume: 397; Issue: 10291 Linguagem: Inglês

10.1016/s0140-6736(21)01287-3

1474-547X

Aline Gubrium, Erika Gubrium,

Empathy and Medical Education

During the COVID-19 pandemic, medicine and public health have grappled with challenges related to individual behaviour and decision making, both in terms of infection and more recently concerning the uptake of COVID-19 vaccines. Social theory has long pointed to the role of narrative when trying to grasp the complexity of understanding and decision making in times of crisis. Such theory has underscored the importance of context to the ways that people understand specific experiences or phenomena, and, consequently, to the understandings that they relay to others. In 1955, the British philosopher J L Austin, in his seminal book, How to Do Things with Words, argued that one cannot evaluate the truths of language as unconnected and operating in isolation. Rather, to understand the meaning of words or extended accounts, one needed to understand how they were used in acts of speaking; how, in practice, speakers used words and accounts to actively produce assemblages of meaning, or narratives. Furthermore, he argued, narratives took on different meanings in varied contexts and were actively enacted in the complex flow of communication in time and place. Austin argued that studying words outside of the narrative contexts in which they were presented ignored the realities created by everyday speech situations. Austin's idea of narratives as active, changing, and contingent on context resonates during the COVID-19 pandemic. We see narrative action in the contemporary connections public health campaigns make between safety and the use of face masks or the decision to self-isolate. Campaign slogans tend to be framed in a medical discourse, where safety relates in a straightforward way to individual choice and public health behaviour. However, the connections that individuals or communities may make between safety, use of face masks, and self-isolation are also socially and contextually informed by lived experience. For instance, the concept of "safety" may change in relation to intersectional lived experiences, such as systemic racism, gendered division of labour within the home, and economic inequality. We draw from Austin and offer two points to substantiate how narrative action and complexity can illuminate such diverse experiences and implications for public health. The first point centres on the crucial need to acknowledge the relevance of broader narrative contexts when developing public health responses to illness and disease. COVID-19 has made it abundantly clear that responses based on biomedical knowledge alone are not enough. Responses must also recognise and adapt to ongoing social, institutional, and political contexts. The risk of catching the virus is not only about getting sick and healing or dying. The pandemic has viscerally revealed how identity and socioeconomic status intersect with place and movement in everyday life to constitute radically different consequences of infection across nations, regions, communities, and neighbour-to-neighbour. Multiple factors shape the experience of living with or through COVID-19, including: intersectional identities cutting across gender, ethnicity, age, and class, among others; the specific opportunity structures connected to place, such as national and local safety nets and labour rights; local services, support, and practices; local labour markets, employment possibilities, and job security; and everyday means of transport. In the USA, for instance, accounts of the risk of COVID-19 might relate to risking one's health to keep working or not going to the workplace and risking losing one's only means of economic support. In Norway, it might mean reducing risk by staying home for those who do not work on the front lines and for the many who have access to extensive state-paid sick leave and unemployment provisions. As in the USA, however, it also might mean a very real risk for people working in precarious and low-income labour sectors. Public health responses aimed at reducing risk need to consider how individual decision making might be shaped by these relational contexts. Our second point builds on the first. It turns to the expanded possibilities offered by using a narrative approach to better understand the relational processes involved when individuals make meaning of and respond to illness. Social science research has a long track record in this area. An early example is sociologist Julius Roth's 1963 documentation of patients' time-and-recovery reckoning in tuberculosis sanatoriums, while he himself was a tuberculosis patient. Roth described how patients relied not only on medical information to make sense of their recovery, but also on other patients by comparing recovery experiences with one another. For both Roth and the patients studied, narratives of similarity and difference were as important as medical knowledge when constructing meaning. Sociologist Jaber Gubrium's 1975 ethnography of nursing home care described the complex experience of death and dying in institutional settings. Everyday practices of caregiving and care receiving were anything but uniformly understood by residents. Narratives of the otherwise seemingly objective medical conditions were often contradictory because the lives of carers and residents that informed these understandings were varied. Such works underline the power of using a narrative ethnographic approach to explore understandings and responses to ill health. Since then, social scientists have used diverse narrative approaches to make explicit what wellbeing, ill health, or disease mean, challenging reductionist thinking. In a social policy study on perspectives and practices relating to poverty and social exclusion, we interviewed research participants from a small New England city in the USA and from the greater Oslo area in Norway about their everyday experiences of life and wellbeing on low or no incomes. Using a narrative social–psychological approach, we explored how research participants made sense of encounters with vastly different welfare and political systems. In the USA, participants spoke of feeling actively shamed by a harsh and precarious welfare system. In Norway, despite a more generous and stable system, participants' sense of marginalisation was heightened by the fact that their experiences did not align with the public narrative of a strong safety net "from cradle to grave". Despite differences in how they perceived and described experiences of and barriers to wellness, they shared the common experience of shame related to poverty's potentially stigmatised status. Most described using individual strategies to hide their difficult socioeconomic situations, strategies leading to withdrawal from personal networks, to a heightened sense of stigma, and to social alienation. Stigmatising public and institutional narratives about poverty and marginalisation further reinforced the decision to withdraw from social and civic life. These sorts of discussions and responses reduced the possibility of bringing significant personal experiences to light, much less the possibility of building a solidarity movement based on shared experiences of risk. Across the USA and Europe we have seen public narrative contexts in which active connection is made between already marginalised minority group identities and the spread of COVID-19—for example, through use of terms such as "import infection", "the Chinese virus", and "the Indian variant". Considering the connection between social exclusion, shame, and stigma, an analysis of individual and social responses to COVID-19 might acknowledge how personal coping strategies may change in the face of potentially stigmatising public COVID-19 narratives. Such a framework might be instructive for understanding the rather limited political mobilisation there has been in differing political and social contexts in response to the extensive socioeconomic health inequalities made hypervisible during the pandemic. One way of highlighting the ways people make meaning of and potentially act on experiences of illness, health, and inequality is through participatory research that documents personal narratives. Researchers have effectively used the participatory narrative approach of digital storytelling to alter the balance of power in health promotion, in terms of who gets to tell their stories. Digital storytelling is a group-based process in which participants receive training to write and produce short videos—digital stories—about important experiences in their lives. In an ongoing public health study titled MOCHA Moving Forward, one of us (AG) has been part of a research team that has included the Men of Color Health Awareness (MOCHA) movement, exploring the everyday experiences of men of colour living and surviving systemic racism, embodied stress, and chronic disease in a small New England city. Through digital storytelling, the men narratively transform themselves from the objectified—and often stigmatised—figures portrayed in the news media and scientific literature to agentic storytellers narrating the scope of their lives on their own terms. The stories that are told are the ones that the men, themselves, wish to share, thus extending the notion of research ethics and consent to afford study participants greater control over articulating what living with inequality and disease means. The digital stories are both personal and political. The men relate experience of dealing with chronic disease to stories of migration from rural southern US states, experiences with job insecurity, home foreclosure, police brutality, and white supremacy, while also speaking of sacrifice, love, hope, yearning, and deep spirituality. By relating experience with chronic disease to narratives of emotionality, digital storytelling methods create the potential for a more nuanced understanding about the dynamics of ill health and a more attuned path for moving forward. The methods could also provide necessary information for crafting responses to COVID-19 that are adjusted to varied life experiences, and are thus more effective. The weight of narrative evidence adds complexity to an often oversimplified picture of medical and public health issues. COVID-19 has revealed a blurred conceptual divide between illness and wellness; between medical and social risks; between safety and harm. Narrative contexts such as the workplace, the home, schools, the community, and health-care settings have shifted in meaning in this pandemic. These changes continue to shape the way we think about and respond to COVID-19. In the short-term, public health campaigns might consider how narrative contexts and personal meaning-making shape how people understand and respond to calls to "stay safe" in the face of the pandemic. In the longer term, accounting for narrative complexity with reference to wellness, illness, and disease is crucial if we are to develop effective and socially just public responses to health crises.