(PDF) Narratives about distributed health literacy during the COVID-19 pandemic

(PDF) Narratives about distributed health literacy during the COVID-19 pandemic
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Narratives about distributed health literacy during the COVID-19 pandemic
Helena Machado
Ilaria Galasso
2023, Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine
November 30, 2024
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Abstract
The promotion of health literacy was a key public health strategy during the COVID-19 pandemic. However, the role of social networks and relationships for support with health literacy-related tasks in the context of the COVID-19 pandemic is scarcely understood. Moving beyond traditional notions of health literacy, which focus on individual skills and knowledge, this study uses the concept of distributed health literacy to explore how individuals make meaning of and respond to health literacy and make their literacy skills available to others through their relational and socially situated and lived experiences of the COVID-19 pandemic. Drawing on 89 semi-structured interviews conducted in three European countries (Italy, Portugal, and Switzerland) between October and December 2021, we found narratives of stabilization, hybridization, and disruption that show how health literacy concerning COVID-19 is a complex social construct intertwined with emotional, cognitive, and behavioral responses distributed among individuals, communities, and institutions within socioeconomic and political contexts that affect their existence. This paper opens new empirical directions to understand the critical engagement of individuals and communities toward health information aimed at making sense of a complex and prolonged situation of uncertainty in a pandemic.
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1215715
research-article2023
HEA0010.1177/13634593231215715HealthSilva et al.

Article

Health

Narratives about distributed 1­–18
© The Author(s) 2023

health literacy during the Article reuse guidelines:
COVID-19 pandemic sagepub.com/journals-permissions
DOI: 10.1177/13634593231215715
journals.sagepub.com/home/hea

Susana Silva*
Institute for Social Sciences, University of Minho, Portugal
Centre for Research in Anthropology (CRIA-UMinho/IN2PAST), Portugal

Helena Machado*
Institute for Social Sciences, University of Minho, Portugal

Ilaria Galasso
University College Dublin, Ireland
Institute of History and Ethics in Medicine, Department of Clinical Medicine,
TUM School of Medicine and Health, Technical University of Munich, Germany

Bettina M Zimmermann
Institute for Biomedical Ethics, University of Basel, Switzerland
Institute of History and Ethics in Medicine, Department of Clinical Medicine,
TUM School of Medicine and Health, Technical University of Munich, Germany
Institute of Philosophy & Multidisciplinary Center for Infectious Diseases,
University of Bern, Switzerland

Carlo Botrugno
Research Unit on Everyday Bioethics and Ethics of Science, Department of Legal Sciences,
University of Florence, Italy

Abstract
The promotion of health literacy was a key public health strategy during the COVID-19
pandemic. However, the role of social networks and relationships for support with health
literacy-related tasks in the context of the COVID-19 pandemic is scarcely understood.
Moving beyond traditional notions of health literacy, which focus on individual skills and

*Susana Silva and Helena Machado are equally contributing authors

Corresponding author:
Susana Silva, Department of Sociology, Institute for Social Sciences, University of Minho, Campus de
Gualtar, Braga 4710-057, Portugal.
Email:
[email protected]
2 Health 00(0)

knowledge, this study uses the concept of distributed health literacy to explore how
individuals make meaning of and respond to health literacy and make their literacy skills
available to others through their relational and socially situated and lived experiences
of the COVID-19 pandemic. Drawing on 89 semi-structured interviews conducted
in three European countries (Italy, Portugal, and Switzerland) between October and
December 2021, we found narratives of stabilization, hybridization, and disruption
that show how health literacy concerning COVID-19 is a complex social construct
intertwined with emotional, cognitive, and behavioral responses distributed among
individuals, communities, and institutions within socioeconomic and political contexts
that affect their existence. This paper opens new empirical directions to understand the
critical engagement of individuals and communities toward health information aimed at
making sense of a complex and prolonged situation of uncertainty in a pandemic.

Keywords
COVID-19, critical health literacy, distributed health literacy, literacy mediators

Introduction
During the coronavirus disease 2019 (COVID-19) pandemic, diverse stakeholders
framed health literacy, in particular digital and media health literacy, as a key public
health strategy demanding people to acquire and apply health information to adapt their
behaviors at a fast pace (Araújo et al., 2023; Okan et al., 2023; Paakkari and Okan, 2020;
Sentell et al., 2020). The traditional approaches to health literacy usually focus on the
individual capacities of reading, writing, comprehension, and numeracy skills to make
critical informed health-related decisions; communication with physicians; and active
participation within modern healthcare systems (Berkman et al., 2010; Samerski, 2019;
Sørensen et al., 2012). A variety of empirical quantitative studies have assessed the influ-
ence of health literacy on COVID-19 awareness and informational needs, as well as on
compliance with preventive behaviors and protective measures, using a traditional
approach to health literacy that focuses on individual skills and knowledge (Almusawi
et al., 2021; Chen et al., 2022; De Gani et al., 2022; Hermans et al., 2021; McCaffery
et al., 2020; Okan et al., 2020; Silva and Santos, 2021). Common topics were the impact
of health literacy on mental health (e.g. depression, anxiety, sleeping disorder) (Hermans
et al., 2021; Luong et al., 2021; Nguyen et al., 2020, 2021), quality of life and well-being
(Ishikawa et al., 2021; Nguyen et al., 2020, 2021); accessibility to health services
(Almusawi et al., 2021; McCaffery et al., 2020) and health information (Chen et al.,
2022); and trust in the healthcare systems and media information (De Gani et al., 2022;
Okan et al., 2020), while others assessed the relationship between health literacy and
trust in a range of information sources (Chen et al., 2023).
In the context of the COVID-19 pandemic, health literacy is frequently described as a
“weapon” (Araújo et al., 2023), a key to “flattening the curve” (Košir and Sørensen,
2022), and a promising “social vaccine” that can be similarly useful to prevent infection
from SARS-CoV-2 as biomedical vaccines (Okan et al., 2023), if applied as a health

Silva et al. 3

promotion strategy. Thus, public crisis communication, as well as mass media and public
health campaigns, are called upon to educate, persuade and guide people to be “good
COVID citizens,” that is, an informed, reflexive and caring person who engages in indi-
vidual actions on behalf of a unified community (Spoel et al., 2021); to prevent the
spreading of “false,” unverified, misleading and contradictory information (Israeli et al.,
2022); and to limit the side effects of the COVID-19 “infodemic” (Araújo et al., 2023;
De Gani et al., 2022; Naeem and Boulos, 2021; Porat et al., 2020; Sentell et al., 2020).
However, the role of social networks and relationships for support with health literacy-
related tasks such as information-seeking or decision-making in the context of the
COVID-19 pandemic is scarcely understood. In contrast to traditional notions of health
literacy, which focus on individual skills and knowledge, we use the concept of distrib-
uted health literacy—that is, “the health literacy abilities, skills and practices of others
that contribute to an individual’s level of health literacy” (Edwards et al., 2015)—to
explore how access and use of health information are shaped by social networks and
relationships (Oliffe et al., 2011).
Through the analysis of 89 qualitative interviews with residents from three European
countries (Italy, Portugal, and Switzerland) held between October and December 2021,
this article moves beyond the traditional approaches to health literacy to explore its
social embeddedness (Bauer, 2019; Johnson et al., 2022). Rather than taking health lit-
eracy as something that individuals should know and do in a pandemic, we explore how
individuals personally perceive the complexity and diversity of skills and resources iden-
tified as necessary for people to be considered literate about COVID-19 in their particu-
lar socioeconomic and political context, through their relational and lived experiences of
the COVID-19 pandemic, and within given structural peculiarities and constraints (Abel
and McQueen, 2021; Fox, 2022; Paul et al., 2022; Spahl et al., 2022). In particular, we
focus on the role of literacy mediators, that is, “a person who makes his or her literacy
skills available to others, on a formal or informal basis, for them to accomplish specific
literacy purposes” (Baynham, 1995).
To gain an in-depth understanding of the context and relational processes in the ways
people understand specific experiences or phenomena, and, consequently, how they
relate their lived experiences to others and social, institutional, and political contexts, we
use a narrative-practice approach (Boéri and Giustini, 2023; see also Gubrium and
Gubrium, 2021) that aims to overcome the dualism between “action” and “discourse” in
traditional social science theory. As proposed by Boéri and Giustini, the narrative-prac-
tice approach frames “narrative [as] enacted stories, and practice as storied actions,” and
through this strategy interviews in the context of the COVID-19 pandemic function as
the practical and narrative site of knowledge construction and contestation that reveals
participants’ subjective stories and behaviors against wider meta-discourses (Boéri and
Giustini, 2023: 17). Concretely, we explored the dynamic and fluid intersections between
“doing” and “saying” distributed health literacy and the complexity of making sense of
being “health literate” in people’s lives and worlds. This approach is particularly relevant
in the context of a public health crisis such as the COVID-19 pandemic, where behavioral,
cognitive, and emotional responses to uncertainty, and the perception of putting oneself
and others at risk rely on distributed and situated positionings that are composed of lived
experiences in times of crisis (Abel and McQueen, 2021; Fox, 2022; Missel et al., 2021;

4 Health 00(0)

Spoel et al., 2021). To gain analytical granularity on the participants’ narratives-practices
of distributed health literacy in the context of the COVID-19 pandemic, we employed
abductive reasoning by critically examining and testing each thematic category devel-
oped during the analysis through an iterative cycle of immersion in the data, engagement
with relevant theories, interpretation, and formulation of tentative theoretical explana-
tions reviewing the original data in the light of concrete experience (Timmermans and
Tavory, 2012; Wagenaar et al., 2022: 9).

Methods
A total of 89 semi-structured interviews were conducted with members of the general
public in Italy (n = 24), Portugal (n = 38), and the German-speaking part of Switzerland
(n = 27) between October and December 2021 as part of a qualitative and multinational
research study in collaboration with the “Solidarity in times of pandemics” (SolPan)
research commons (Wagenaar et al., 2022; Zimmermann et al., 2022b). Due to the ad-
hoc setup of the SolPan project, our research design, including the selection of countries,
can be best described as pragmatic and opportunistic (Wagenaar et al., 2022). We adopted
a flexible strategy in which interpretive analysis was a hermeneutic way of understand-
ing the meaning of similarities and differences of people’s experiences with the COVID-
19 pandemic in the three countries by situating them within their relevant context aiming
to create the conditions for theoretical innovation, as well as for the possibility to gener-
alize and contextualize findings and explanations (Wagenaar et al., 2022).
Participants were recruited through public advertisements on the university websites,
the research groups participating in SolPan, snowballing, and convenience sampling.
Most of the interviewees have a high level of education, and medium or high income
(Table 1). The inclusion of data from three separate countries afforded greater sensitivity
and theoretical saturation regarding the complexity and diversity of skills and resources
identified as necessary for people to be considered literate in relation to COVID-19.
Data was collected based on the SolPan interview guide, where the order and length
of the different topics that were covered varied according to the flow of the conversation.
The interviews did not focus on health literacy specifically but asked about interviewees’
sources of formal and informal support during the pandemic, as well as the types of skills
and resources provided by networks of individuals and communities to deal with
COVID-19.
Interviews were held on the phone, online, or in person. Before the interview, partici-
pants received in-depth information about the study, and any questions they had were
answered. Consent was obtained orally directly before the interview. The consent pro-
cess and the subsequent interview were recorded on a digital recorder. Audio recordings
were stored for transcription. Transcripts were given pseudonyms and not returned to
participants.
Throughout the data analysis process, relevant text passages concerning distributed
health literacy were selected and analyzed abductively. We searched for distinct narra-
tives that generated a fluid epistemological dialog with practice approaches (Boéri and
Giustini, 2023) and aimed to improve theoretical saturation. The coding of each inter-
view was checked by a second researcher for consistency. Through this iterative process

Silva et al. 5

Table 1. Interviewees’ characteristics.

Total Italy Portugal Switzerland

(n = 89) (n = 24) (n = 38) (n = 27)
Gender
Female 50 17 19 14
Male 39 7 19 13
Age
18–30 16 1 10 5
31–45 24 10 8 6
46–60 23 6 10 7
60+ 26 7 10 9
Educational level
Less than 10 years 11 2 0 9
10–14 years (e.g. high school diploma) 26 12 11 3
Higher education 52 10 27 15
Employment status
Employed (long-term contract) 28 7 10 11
Self-employed 16 7 6 3
Employed (short-term/precarious contract) 12 1 5 6
Unemployed 6 2 4 0
Retired 19 3 9 7
Other 8 4 4 0
Household composition
Single 15 5 3 7
Couple 25 7 9 9
Living with child/children under 12 16 5 8 3
Living with child/children 12+ 12 3 4 5
Other 21 4 14 3
Urbanity level
Big town 26 10 11 5
Medium/small town 35 10 16 9
Rural (e.g., village) 28 4 11 13
Household net income
Up to 1400€ (4000CHF)/month 16 3 8 5
1401€−3000€ (4001–7000CHF)/month 43 15 19 9
More than 3000€ (7000CHF)/month 30 6 11 13

characterized by a continual comparison of interviews, we condensed the findings into
the three narratives presented in the next section. Following a pragmatic approach (Low,
2019), we addressed data saturation by including data from three European countries,
and by aiming to maximize the diversity of perspectives. Quoted participants are anony-
mous, but each participant is pseudonymized with a country code and a number that are
provided after each direct quotation (e.g. “IT10” for Italian participant number 10; “PT12”
for Portuguese participant number 12; “CH09” for Swiss participant number 9).

6 Health 00(0)

This study received ethics clearance from the University of Vienna (the leading insti-
tution of the SolPan research commons, no. 00544), the University of Minho, Portugal
(ID: CEICSH 061/2021), and the University of Basel, Switzerland (no. 101).

Results
According to the narrative-practice approach proposed by Boéri and Giustini, narra-
tives have joint ontological and epistemological mechanisms of construction and
appropriation (“patterns of narrativity”) which are the following: temporality (the
sequencing of events in time and space), the selective appropriation (selecting or
weighting particular events at the expense of others), relationality (the meaning-­
making connections between the elements of the narrative and between these elements
and aspects of the overall context) and causal employment (gearing the plot toward a
particular moral outcome) (Boéri and Giustini, 2023: 7). According to the authors,
these patterns of narrativity allow people to make sense of who they are (narrative
identity), of their relational settings, and how and why the behave as they do in this
world (narrative action) (idem, ibidem).
The following patterns of narrativity have emerged in data analysis: identity
(how interviewees make sense of themselves and others as health literate concerning
COVID-19); action (how and why interviewees behave as they do in relation to
COVID-19); and relational settings (how and why interviewees engage with or reject
literacy mediators for dealing with COVID-19) (Boéri and Giustini, 2023). The follow-
ing themes unfolded: (1) meanings given to being health literate concerning
COVID-19; (2) skills and resources perceived as necessary for people to be considered
health literate about COVID-19 (emotional, pragmatic, and informational); and (3) net-
work of literacy mediators for dealing with COVID-19.
Three distinct types of narratives emerged from the data: (1) a narrative of stabiliza-
tion, when reductionism, similarity, and emotional stabilization are the elements that
stand out; (2) a narrative of hybridization, when institutional trust intersects with per-
sonal involvement and participation in compliance and education; (3) a narrative of dis-
ruption, when humanity and pluralism are perceived as important as medical knowledge
and politics to deal with COVID-19.

Narrative of stabilization
The interviewees that we categorized as enacting a narrative of stabilization were those
who mentioned the usual network of health literacy mediators that surrounded them
before COVID-19, mainly family members and traditional media (internet, television,
and local newspapers). They expressed no particular need to inform themselves pro­
actively about everything.

I still access information in an old-fashioned way via the newspaper and news on TV. And I
don’t use any other channels. Because some of it is too lurid for me. I need some information,
but I also have to block out certain things. (CH03)

Silva et al. 7

My strongest feeling about this pandemic is that I’ve narrowed [to shape like a funnel], OK?
(. . .) I’m less available (. . .) to think about some issues. (. . .) Even today, I choose not to
search for information about certain topics. (PT28)

Some participants used to be more proactive in seeking information but stopped at
some point because they felt overloaded by the amount of information available, wanted
to avoid complexity, inconsistency, and “bad news,” or were just fed up with COVID-19
altogether.

I tried to shield that [media] for myself a little bit. Because (. . .) you hear the left parties, you
hear the right parties, and you hear the middle parties. And in the end, you no longer knew what
was true and what was not true. (CH18)

The whole [discussion about] “it is best as we do it” and “then we do it that way anyway” and
just such things, “we ease [restrictions] there and then we don’t.” At some point I thought,
“oh, guys, this [topic] is just getting on my nerves.” And I switched off a bit. (CH22)

As a consequence, several participants stated that they relied on their acquaintances—
partners, children, siblings, employers, or friends—to become aware of relevant changes
and as information mediators. This was often enough for them to deal with their own
health literacy needs, but some interviewees also added “trusted” primary healthcare
providers and info hotlines as helpful for managing information related to testing, vac-
cination, or treatments.

[After I had COVID-19] I started taking vitamins. Only I did it. In my lay opinion, I felt that it
would be ideal (. . .) Otherwise, I got advice, especially from my brother, who is a doctor,
rather than from the family doctor. Sometimes it’s inconvenient for me to go to the doctor. But
I consult with her by phone or by message. As I talk to my brother every day, so I prefer. . . I
talk to him. (PT10)

So, at first, I was afraid because (. . .) I thought “If it [the vaccine] has been made so fast there
isn’t enough testing and maybe it’s not safe.” Then what convinced me [to get vaccinated] was
to ask for medical advice from people. . . from medical doctors whom I trust and whom I have
always trusted. (IT01)

The interviewees embracing the narrative that we defined as stabilization frequently
mentioned the need to communicate with or receive mediated information from family and
friends, with whom they often kept in touch through social media. Participants also referred
to the need to be able to select the people they talked to, avoiding discussions with those
who disagreed with the handling of the pandemic. Others mentioned that their preferred
strategy was adapting information sourcing to the perceived current urgency of the pan-
demic and obtaining only the minimum relevant information for mental protection.

I have friends (. . .) who on social networks expose theories [on COVID-19] that I do not share.
With them, I decided not to discuss this thing. (IT11)

8 Health 00(0)

I took myself out of it a bit. I just read our local newspaper (. . .) And from that point of view,
I probably don’t know a lot of things that have happened. I never watched any discussion on TV
or anything. I don’t need that. (. . .) [It is] a demarcation mechanism and also in the sense of
keeping anger away from me when I would get upset. (CH01)

Some interviewees also made their literacy skills available to their loved ones to
provide emotional support, while other participants got help registering online for the
COVID-19 vaccine. For example, one participant working in the Pharma sector, and
another participant working as a family doctor, focused on the provision of emotional
support regarding the decision to get vaccinated:

So with people who are really that unsure, who come to me or approach me and ask, “hey, is
the vaccination safe or not?” And I tell them “yes” and then they get vaccinated. (CH20)

I am the person they look for to ask for advice [about vaccination]. In general, they trust me.
(IT13)

Interviewees undertaking narratives of stabilization commented upon vaccination
hesitancy or the belief in conspiracy theories as troubled health literacy skills and
practices, sometimes associated with “ignorant” people, as exemplified in the quotes
below.

I just find it difficult, this vehemence, when you have the feeling that you’re absolutely on the
right side now and everyone else is doing everything wrong. I have a lot of trouble with that.
(CH01)

There is a very high percentage of people who are against vaccines in general even before this
story. Now to allow these people to spread their ignorance. . .they put people in danger. (IT17)

According to the narratives of these interviewees, being health literate in relation to
COVID-19 is not only about self-compliance with rules and recommendations set out by
authorities but also about the suppression of self-questioning for the common good.

It was not difficult for me to comply; it was difficult to accept. I always comply, because of this
idea that we live in society and that we are citizens and we have to comply with a series of rules,
I am OK with that, but I always questioned it. However, I knew that it was for the greater good
and I complied. (PT25)

In summary, narratives of reductionism, similarity, and emotional stabilization are
important when constructing meaning about how health literacy is distributed through-
out a group.

Narrative of hybridization
For other interviewees, which we categorized as conveying narratives of hybridization,
health literacy mediators consisted of a combination of family, friends, and institutional

Silva et al. 9

actors linked to the formal settings of science, government, and health authorities. These
participants had a very proactive way of seeking health information from a variety of
sources, including diverse media formats beyond the daily news (e.g. background reports
in the newspaper, talk shows, etc.), and direct information from health authorities and
experts. Many also actively engaged in discussions with their social network to exchange
information or inform others.

I tried to look at more serious newspapers. Let’s say, more something where I thought they
would bring me further in knowledge. Because I think I can only judge or feel one way or the
other or talk to other people if I have good, clever arguments. And that’s why I tried to look at
the media in a much more targeted way. So maybe not only look at the Blick headlines [Swiss
tabloid] but also NZZ or Tagesanzeiger [Swiss quality newspapers]. To read more background
reports or to watch talk shows on television. (CH17)

These interviewees often knew how to source and find relevant and trustworthy
information, and frequently expressed positive emotions and trust toward scientific and
political institutions. Participants valued guidance from politicians and scientists and
relied on their recommendations to advise others.

We should try as much as possible to convince that person to be vaccinated, not in a rude way,
but by showing facts and research studies so that he/she understands that he/she needs to get the
vaccine if he/she wants to help Portugal. (PT07)

To me, it is important to use reputable information sources. That means I am not on Facebook
or whatever. (. . .) And also, I trust the Federal Office of Public Health. (CH03)

The role of acquaintances in the provision of emotional support was highlighted as a
pillar to deal with anxiety and thus improve mental health, but it is often described as a
“private” and “intimate” issue. Some interviewees reported the wish for expertise in their
social environment, considered more trustworthy:

It would have been great for me if I knew someone in my circle of acquaintances who, let’s say,
had a clue. But I didn’t have that. So the only thing left was the Internet. (CH10)

Besides the provision of informational support to those deemed “uninformed” to
allow compliance with action toward the government, the interviewees also provided
pragmatic support to the family, friends, and other people to facilitate engagement in
protective practices, sometimes upon request or in conjunction with civic and political
associations like scouts and parish councils.

Surely information has always been a very difficult issue, in the sense that we have been
bombarded with often inconsistent information and therefore it was not easy to identify the
official institutional communications and pass them on to the citizens. (. . .) I had activated a
whole series of communication channels for the citizens [at the workplace in the public
administration], including telephone calls at home. (IT14)

10 Health 00(0)

But I’ve also talked to someone who said, “I don’t see why restaurants aren’t open, but the
school is open” and so on. And then I try to explain what the difference is between a restaurant
and a school and why the conditions are a bit different. (CH05)

I helped my friends to do COVID-19 self-tests because they were afraid to obtain a sample by
nasal swab. (PT26)

Initially, when there was a shortage of masks, we, the scouts, distributed food in coordination
with the parish council. (PT08)

Health literacy practices situated outside the institutional framework were seen as
“irrational.” A few participants perceived highly educated COVID deniers or anti-vaxx-
ers as “ shocking” (CH02) and “surprising” (IT02) as they were expected to be on the
side of “truth” because of their educational backgrounds.

The best would not be to force people but to convince them of the goodness of what they are
going to do, so . . . I know that sometimes it is not possible because unfortunately there are
people who reason by following other logic, not rational ones, and then they think of nonexistent
conspiracies. (IT14)

Several participants stressed as crucial elements of health literacy the importance of
active information sourcing, the ability to contextualize information, critically assess the
trustworthiness of the source, and getting a variety of perspectives.

Even at the beginning of a crisis, you have to have the courage and do the puzzle. Doing the
puzzle means using different information channels, and looking at how they communicate this.
What is being shown, and what is being talked about? What is the intensity? And to say
afterward, based on this puzzle, to form your picture. (CH07)

In summary, according to the interviewees enacting a narrative of hybridization, being
health literate in relation to COVID-19 meant complying with rules, following recom-
mendations set out by authorities, and educating other people on how and why to adopt
the same path. From the perspective of these participants, institutional trust intersected
with personal involvement and participation when constructing meanings about how
health literacy was distributed throughout a group.

Narrative of disruption
The interviewees who searched for information outside the standard network of health
literacy mediators did so mainly due to a general distrust of politicians and traditional
information sources, particularly the media. We grouped them in what we have named the
narrative of disruption. These interviewees criticized the media, including social media, to
be tendentious, having conflicts of interest, and reporting overly pessimistically: “they
destroy everything” (CH09) and “make terrorism” (IT03). Others accused the media of
deliberately ignoring certain aspects of the debate out of economic interests.

Silva et al. 11

The State forces me to get vaccinated, otherwise, I am not allowed to do anything. I became a
second-class citizen. (. . .) This is a violation of privacy and most importantly, of democracy.
This is very serious. So I am fighting my personal war. Luckily I am not alone. We are many
and I hope that consciences will be awakened sooner or later. (IT03)

I wouldn’t know whom I could trust 100% in that sense. I find that it has become such a jungle.
You hear one thing and you think, “oh yes, he’s totally right.” And then you hear the opposite
somewhere else and find, “oh yes, that’s true.” And then you don’t know anymore, what are the
facts now? Yes, because you hear so much about who is sponsored by whom. (CH27)

The following quotation reveals a critical positioning and looking for alternative
“humanist” and “scientific” approaches to deal with COVID-19, mainly based on infor-
mation disseminated by specialists detached from the official mainstream:

I question the ways to control this [COVID-19], there are several, there may be several, and at
the moment they [government and media] only impose on us one that is vaccination, and this
[imposition] created a great dualism at the social level. (. . .) There were (. . .) people from the
health sciences, people who knew what they were saying, who were highly criticized for having
a different way of approaching the issue [how to manage COVID-19]. (. . .) In my opinion, the
media only adopts this type of narrative, leaving no room for other issues, which are labeled as
denialism. (PT16)

Interviewees’ worries about the lack of consistency and the silencing of critical voices
in traditional media triggered supporting practices via their social networks. For instance,
they provided and received information about complementary or alternative approaches
to deal with the diagnosis and treatment of COVID-19. In addition, some of these partici-
pants disseminated alternative information they deemed credible, for instance about
healthy lifestyles, supported by their examples of resistance, resilience, and happiness. In
the words of one interviewee:

I will continue, on my personal page (. . .) and in my personal contacts, (. . .) disclosing
information that I find credible. I will try within my workspace to continue to enhance human
relationships. (. . .) I show that I am happy, show that I am well, that I am healthy, and that I
do not live in fear and do not live subject to measures with which I do not identify. (. . .) This
excessive time dedicated to COVID (. . .) contrasts with the lack of information and time
dedicated to healthy eating, physical exercise, and human relationships, to demystify fear.
(PT14)

Some interviewees also provided pragmatic and emotional support to others by making
their health literacy skills available to those they perceived as being vulnerable, namely
those who experienced health and economic hardships as a result of the COVID-19
pandemic.

I knew four or five families who needed it [help to eat]. (. . .) I came home to cook, to make the
lunch and the dinner to take to them. (. . .) Another lady (. . .) made soup. . . and I made the
rest. (PT12)

12 Health 00(0)

In summary, for this group of interviewees being health literate concerning
COVID-19 means complying with compulsory rules set out by authorities but with
critical thought, and being aware of multiple strategies to deal with a pandemic.
Values of humanity and pluralism are perceived as important as medical knowledge
and politics when constructing meaning about how health literacy is distributed
throughout a group.

Discussion
In line with the theoretical framework of distributed health literacy (Edwards et al., 2015;
Muscat et al., 2022), this study conducted in three European countries shows how health
literacy in relation to COVID-19 is a complex social construct intertwined with emo-
tional, cognitive, and behavioral responses distributed among individuals, communities,
and institutions within situated positionings (Fox, 2022; Spoel et al., 2021). Offering a
nuanced picture of the social embeddedness of health literacy (Bauer, 2019), our findings
indicate how distinct networks of literacy mediators relate to complex and diverse emo-
tional, pragmatic, and informational literacy skills, as well as to family and social net-
works identified as necessary for people to be considered literate concerning COVID-19.
This study reinforces the importance of context and relational processes to how people
understand specific and lived experiences or phenomena in the context of the COVID-19
pandemic (Bröer et al., 2021; Fiske et al., 2022; Galasso and Watts, 2022; Hangel et al.,
2022; Johnson et al., 2022; Paul et al., 2022; Spahl et al., 2022), and, consequently, how
they rely on others and on social, institutional and political contexts (Gubrium and
Gubrium, 2021) to interpret health literacy and their literacy skills available to others in
the COVID-19 pandemic.
Our three major distinct narratives show how the participants in this study reproduce,
negotiate and contest mainstream rationalizing neo-communitarian governmentalities,
discourses and actions on health literacy of “good COVID citizens” (Spoel et al., 2021)
through their heterogeneous experiences of the COVID-19 pandemic (Boéri and Giustini,
2023). All the narratives are related to the interviewees’ lives and vital worlds, that is,
socioeconomic and political contexts that affect their existence.
The narrative of stabilization is in line with previous studies that indicate that the
most common sources of information related to COVID-19 were the internet and tradi-
tional media (Ho et al., 2020), with no particular need to proactively inform themselves
about everything (Soroya et al., 2021), a strong orientation toward self-compliance with
rules and recommendations set out by authorities (Spahl et al., 2022), and subjugation
of self-questioning to the common good (Hangel et al., 2022; Zimmermann et al.,
2022a). The narrative of hybridization is aligned with previous studies that highlight the
role of institutional trust (Badman et al., 2022; Paul et al., 2022) and the personal
involvement and participation in compliance with health-related rules set up by official
authorities (Spahl et al., 2022). This kind of narrative shows the importance of the use
of a hybrid combination of health literacy mediators (family, friends, and institutional
actors linked with formal settings from science, government, and health authorities)
(Lupton and Lewis, 2021), with a very proactive way of seeking health information

Silva et al. 13

from a variety of sources (Ali et al., 2020), and willingness to educating other people
(Porat et al., 2020). Finally, the narrative of disruption highlights the importance of
humanity and pluralism as important as medical knowledge and politics (Lohse and
Bschir, 2020). This latter type of narrative translates into practices of a search for health
information outside the standard network of literacy mediators (DiRusso and Stansberry,
2022), mainly due to a general institutional distrust in politicians and traditional infor-
mation sources (Jennings et al., 2021; van Meurs et al., 2022) and to information gaps
related to missing (hidden or silenced) information, manipulated information and dis-
crepant information (Israeli et al., 2022). The group of participants conveying a narra-
tive of disruption referred to engaging in compliance with compulsory rules stipulated
by authorities but with criticism, and showing awareness of multiple strategies to deal
with a pandemic (Crabu et al., 2023).
In contrast with participants enacting the narrative of stabilization, the participants
conveying narratives of hybridization and disruption stated how they were actively
contributing to the debate in their social networks and online communities (Lawless
et al., 2022). As such, the narratives of hybridization and disruption are related also to
“critical health literacy” as a social asset that helps individuals and communities
toward a critical engagement with health information (Abel and McQueen, 2021;
Chinn, 2011; Oliffe et al., 2011).
To conclude, our findings enrich theoretical and analytical perspectives oriented
toward the mapping of the diversity of literacy mediators, showing, for example, how
people “protected” themselves by refraining from being exposed to some information
either by excluding or avoiding some literacy mediators or selecting others as strate-
gies to deal with information overload and uncertainty and confusion created by
divergent opinions and beliefs conveyed by traditional health literacy mediators, like
health officials and health communicators (Hodson et al., 2023; Israeli et al., 2022;
Soroya et al., 2021). As previous studies about health literacy in the COVID-19 con-
text show, trust shapes the filtering of information sources (De Gani et al., 2022).
Our study corroborates the importance of trust but also highlights the relevance of
the articulation of trust (and distrust) with emotional, pragmatic, and dynamic infor-
mational work aimed at making sense of a complex and prolonged situation of
uncertainty.
The findings of this study can offer valuable insights to health communication pro-
fessionals. Our data emphasize the diversity of sources people turn to for health infor-
mation during the pandemic. Health communication professionals can use this insight
to tailor their messaging and content to align with the various channels and the diverse
mediators that individuals utilize. By understanding how people cope with overwhelm-
ing information, professionals can design communication materials that help individu-
als navigate the flood of complex information. Our research also highlights the role of
trust in filtering information sources (Chen et al., 2023), and how trust articulates with
emotional and pragmatic aspects. Health communication professionals can leverage
this insight by focusing on building and maintaining trustworthiness, addressing emo-
tional concerns, acknowledging practical challenges, and providing context for pro-
longed uncertain situations.

14 Health 00(0)

Limitations of the research
Owing to language and affordability constraints, and because we were covering an
array of topics, each author accessed and analyzed only parts of the original data
(Wagenaar et al., 2022). However, we have sought to balance this constraint by report-
ing relevant findings in the English language and jointly discussing the interpretation
of the data. Moreover, even though we aimed to enable a maximum variation of views
and experiences by controlling key participants’ demographics, our sample is biased
toward people with higher levels of education and income. We addressed this issue by
following a pragmatic approach of theoretical saturation that applies greater sensitivity
to the interpretative process of data analysis derived from three separate countries
(Low, 2019).

Acknowledgements
The authors would like to thank all the participants of the SolPan and SolPan+ studies. This study
draws on the SolPan research commons and we are grateful to all the researchers who contributed
to the design of the interview guides and data preparation.

Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship,
and/or publication of this article.

Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/
or publication of this article: Ilaria Galasso is funded by Cariplo Foundation, Science and
Technology Studies Grant (Bando Ricerca Sociale 2020, grant number 2020-1314) and the
European Research Council (ERC) under the European Union’s Horizon 2020 research and inno-
vation program (grant agreement No 771217); Bettina M. Zimmermann is funded by the University
of Basel Forschungsfonds for Junior Researchers (no BE1003); Carlo Botrugno is funded by
“SolPan” project, Cariplo Foundation, Social Science Research Grant (Bando Ricerca Sociale,
grant number 2020-1314).

ORCID iD
Susana Silva https://orcid.org/0000-0002-1335-8648

Data availability statement
The data are not publicly available due to privacy or ethical restrictions.

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Author biographies
Susana Silva is an assistant professor of Sociology at the Institute of Social Sciences, University
of Minho, Portugal. Her research focuses on the societal and ethical challenges emerging from
the uses of reproductive and genetic technologies. Based on interdisciplinary multi- and mixed-­
methods research, she explores people-centered policies and integrated care, and discusses con-
temporary modes of governance of research, health regulation and clinical practices.
Helena Machado is a full professor of Sociology at the Institute for Social Sciences, University of
Minho, Portugal, and chair of the Scientific Council for the Arts, Humanities and Social Sciences
of the Foundation for Science and Technology in Portugal. She is curious about the interplay
between science, technology and society, with a particular interest in genetic biobanks and cutting-
edge technologies for human identification. She values interdisciplinary research, being inspired
by the intersection of social studies of science and technology, surveillance studies, critical algo-
rithm studies, and pragmatic ethics.
Ilaria Galasso has a background in ethical and political philosophy and philosophy of science, and
holds a PhD in Science and Technology Studies from the European School of Molecular Medicine
based in Milan, Italy. Her research analyzes medical innovation from an ethical and political
perspective, by considering the possibly deriving benefits and their distributions and accessibility,
in relation to justice, social inequalities and the social determinants of health.
Bettina M. Zimmermann holds a PhD in Bioethics from the University of Basel, Switzerland. She
specializes in public health ethics, particularly in the fields of genetics and infectious diseases.
Carlo Botrugno is an assistant professor in Philosophy of Law and Bioethics at the Department of
Legal Sciences, University of Florence, Italy, where he founds and coordinates the Research Unit
on Everyday Bioethics and Ethics of Science (RUEBES). He is consultant at the European Institute
of Oncology (IEO), in Milan, Italy.
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Helena Machado
Universidade do Minho, Faculty Member
Ilaria Galasso
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