Health literacy as a social practice: Social and empirical dimensions of knowledge on health and healthcare

Social Science & Medicine 226 (2019) 1–8

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Health literacy as a social practice: Social and empirical dimensions of knowledge on health and healthcare

T

Silja Samerski University of Applied Sciences Emden/Leer, Constantiaplatz 4, 26723, Emden, Germany

A R T I C LE I N FO

A B S T R A C T

Keywords: Germany Health literacy Social practice Health behaviour Healthcare Experiential knowledge Ethnography

Health literacy has become a hot topic in health research and public health promotion. Most definitions specify health literacy as an individual cognitive skill, and surveys such as the EU-HLS which ask people to self-rate their decision-making capacity in the health system, grade a majority of the population as having an inadequate health literacy. Inspired by a praxeological understanding of knowledge and based on an empirical study on welfare bricolage in superdiverse urban neighborhoods, this paper explores health literacy ethnographically and highlights people's knowledge, creative practices and experiences concerning health and healthcare. It draws on 42 semi-structured interviews conducted with a highly diverse sample of residents in Bremen, Germany, between September 2015 and April 2017. The interviews were analyzed with the help of collaborative systematic thematic analysis. The findings question the individualistic and rationalistic bias of conventional approaches to health literacy and suggest that health literacy as a social practice is situational, multidimensional – comprised of different sources and forms of knowledge – and co-produced in social relations. This reformulation of the concept suggests that future research on health literacy should adopt a resource-oriented approach and embrace the rich variety of health knowledge practices.

1. Introduction Over the last decade, health literacy has become a major topic in health research and politics. Surveys testing literacy skills in health care settings or asking participants to self-rate their competencies regularly diagnose alarming deficits. The European Health Literacy Project (2009–2012), for example, found that “nearly half of all adults in eight European countries tested have inadequate or problematic health literacy skills that adversely affect their health” (WHO, 2013). In particular elderly people, migrants and other vulnerable groups have been found to experience severe difficulties finding and assessing health information, and using it to make informed decisions on such issues as vaccination, cancer screening or getting a second opinion. The results of the EU-Health Literacy Survey (HLS) highlighting a “health literacy crisis in Europe and beyond” (WHO Europe, 2013, 1) has put health literacy on the political and scientific agenda, exemplified by some countries like Germany or Switzerland that have launched campaigns to increase the health literacy of their populations. In the definitions and conceptual frameworks underlying the surveys, health literacy is predominantly understood as an individual cognitive skill. The EU Health Literacy Project explains that “health literacy is linked to literacy and entails people's knowledge, motivation and confidence to access, understand, appraise and apply health

information to make judgments and take decisions in everyday life in terms of healthcare, disease prevention and health promotion to promote and maintain quality of life during the life course” (Sørensen et al., 2015). Accordingly, the EU-HLS, with its 47 questions, assesses the ease with which individuals find and understand information, mostly medical information, and make choices. Questions are phrased as: “On a scale from very difficult to very easy, how easy would you say it is to judge which health screenings you should have”. If respondents consider this judgment easy, they achieve a better health literacy. Yet, the benefits of many early detection screenings are scientifically contested. The more respondents know, the more difficulties they might have deciding to take, for example, a mammogram. For that reason the Max-Planck-Institute für Human Development (2018) has nominated the German survey results as the “mis-statistics” of the month (“Unstatistik”), arguing that the survey measures nothing but “felt health literacy”. The survey and the interpretation of its results were subject to debate (among others Steckelberg et al., 2017), but not its underlying premises. On a closer look, the corresponding conception of health literacy is based on information processing and individual choice as key elements and thus geared towards a rationalistic and individualistic understanding of human action. Furthermore, it measures people's knowledge against the demands of the health care system and thereby

E-mail address: [email protected]. https://doi.org/10.1016/j.socscimed.2019.02.024 Received 11 July 2018; Received in revised form 11 February 2019; Accepted 13 February 2019 Available online 16 February 2019 0277-9536/ © 2019 Elsevier Ltd. All rights reserved.

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health care system, patients are not primarily expected to “function” and be compliant, but rather to act as informed and self-responsible decision makers. The principle of “doctor knows best” has been substituted by “patient decides best” (Samerski, 2009). Definitions of health literacy in the 21st century reflect this transformation and correspondingly depict the health literate citizen as an informed decision maker. For example, many US institutions have adopted a definition that describes health literacy as the „degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions“ (U.S. Department of Health and Human Services, 2010, 1). This cognitive and individualistic approach to health is also incorporated in the imagery of the European Health Literacy Project, which uses as a symbol for health literacy, a head with three gear-wheels in its brain, that either work smoothly or not. Even when the interactive nature of health literacy is recognized, e.g. in the more recent concept of “health literate organizations”, it is almost exclusively conceptualized as „ … the interaction between individuals and information” (Chinn, 2011, 65). Hence, a health literate organization is one that actively facilitates the access and use of information. The emphasis on individual choice liberates health literacy from medical paternalism and the demand on patients to comply with doctors' orders. Nutbeam, who contributed to the 1998 WHO definition, states that “Health literacy means more than being able to read pamphlets and successfully make appointments. By improving people's access to health information and their capacity to use it effectively, health literacy is critical to empowerment” (Nutbeam, 1998, 357). Consequently, Nutbeam suggests that we understand health literacy as an “asset” which allows people gain greater control over the personal, social and environmental determinants of health and coined the concept of critical health literacy which dovetails with the premises and goals of health promotion (Nutbeam, 2008). This expanded notion of health literacy implies, as argued by Sørensen et al. (2012), that knowledge of public health (e.g. on prevention and social determinants of health) becomes a precondition for general wellbeing. The meaning of health literacy is continuously expanded to denote a vague but general precondition for personal and collective empowerment in all health-related issues (Vogt et al., 2016). Due to these broadened definitions of health literacy, people's imputed deficits not only relate to the demands of healthcare systems, but are seen as deficits of a general health competence. Earlier “functional” definitions, sometimes also referred to as “medical health literacy,” (Sørensen et al., 2012) limit the demand for health literacy by the need to effectively function in a scientifically and technologically advanced medical system. In contrast, the newer and broader definitions make “health literacy” a precondition for empowerment not only in the medical system, but also in everyday life. Thus, information that was once thought necessary only to make specific medical decisions is now thought necessary for responsible and effective care in all health-related matters, whether in the hospital or at home, as exemplified by Kickbusch's definition of health literacy as the “ability to make sound health decisions in the context of everyday life – at home, in the community, at the workplace, the health care system, the market place and the political arena” (Kickbusch et al., 2008, 206). This idea of a general health competence is linked to a survey that mainly measures people's felt skills to get along in the healthcare system. As Guzy et al. (2015) argue, the focus of mainstream research remains on the assessment of functional health literacy of individuals in clinical settings. Most empirical research measures the literacy or knowledge of the health system “through abstract tests” (Papen, 2009, 20) and thereby promotes a deficit-oriented perspective. Together with a broadened and vague understanding of health literacy, whole sections of the population tend to be classified as health incompetent and being in need of education.

promotes a patient “deficits” or “risk approach” (Nutbeam, 2008) – since those with low literacy scores are assumed to hazard adequate healthcare. However, recognizing the limitations of an individualistic and functional conception of health literacy, a “second wave” (Chinn, 2011) of health literacy research has moved towards a more social and contextualized view. Nutbeam (2000) has proposed the concept of “critical health literacy” which aims at collective empowerment and change by including public health knowledge on the social determinants of health. Yet, even „critical health literacy” emphasises “… the interaction between individuals and information” (Chinn, 2011, 65), depicting citizens as cognitive agents instead of as emotional, social and embodied beings. Furthermore, recognized tools for assessing critical health literacy on a population level do not yet exist (Guzys et al., 2015). Thus, as Fairbrother et al. (2016) complain, the vast majority of health literacy research still focuses “on promoting functional health literacy (…) and this narrow conceptualisation is ‘reinforced by a health education model that emphasises information giving’“(Fairbrother et al., 2016, 477). Empirical research on patients’ views of health care shows that health literacy activities are contextual, of a “collaborative nature” and shaped by “power issues involved in modern health care practice” (Papen, 2009, 29). Thus, Chinn (2011) recommends the New Literacy Studies that understand “literacy as a socially contextualized event“, as a model for further qualitative health literacy research aimed at uncovering how patients make sense of and negotiate the medical system (Chinn, 2011, 65). Inspired by this emerging stream of research in health literacy research (Fairbrother et al., 2016; Papen, 2009, 2012) this article examines health literacy as a social practice. Specifically, theoretically committed to a praxeological understanding of knowledge and human action (Bourdieu, 1977; Reckwitz, 2003; Schatzki, 1996, 2002) and based on ethnographic interviews conducted in a neighborhood of a Northern Germany city, this article reports on the health and illness narratives of socially and culturally diverse interviewees. The article uncovers the social and empirical dimensions of health knowledge that seem of high relevance to healthcare but have not yet received due attention in the discussions on health literacy. In the first section of this article I delineate the current notion of health literacy and its focus on information processing and decisionmaking competences. In the second section, drawing on ethnographic research, I recommend understanding health literacy as a social practice, namely as interrelated “doings and sayings” that are co-produced in social relations. In this view, health literacy depends on concrete situations, the resources at hand and, in many cases, is prompted and shaped by personal experience and somatic (bodily) knowledge. Finally, I conclude by drawing out the significance of these insights for the further research and discussion on health literacy. 2. The concept of health literacy – from functional skills to “health competence” Since the 1990s, health literacy has been a debated concept in the Anglo-American literature. Originally, it referred to the technical skills of reading and writing in order to ensure compliance within the health system. Alarmed by the findings that more than a fifth of all USAmericans could not sufficiently read, write or understand written or numerical information, scientists started to investigate and problematize the consequences of low literacy skills for the health system (a.o. Parker, 2000). This primary understanding of health literacy focused on patient compliance as its main goal and is therefore generally dubbed the “functional” conception. Yet, with medical paternalism fading in the late 20th century and “informed choice” advancing to being the main aim of professional services (Samerski 2009, 2015), promoters of health literacy changed their goals and underlying assumptions. In today's 2

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3. Health literacy as a social practice

4. Methodology

There is no doubt that cognitive skills and information are crucial for successfully navigating modern health systems. The more scientific and technical medicine becomes, the more that has to be learnt in order to grasp what is being offered or recommended. With the progression of science and technology, the literacies demanded from patients proliferate - literacies which are postulated either as constituents of health literacy or as additional ones: among others; genetic literacy, scientific literacy, risk literacy, technological literacy, and digital literacy. For all these literacies, politicians and professionals launch programs in order to make people fit for the techno-scientific system (among others Jennings, 2004; Dakers, 2014; Samerski, 2015, RiskLiteracy.org 2018). Most of those literacies depict people as rational and informed decision makers whose behaviour can be steered with exposure to appropriate information; they view “literacy as a ‘mental’ or ‘cognitive’ phenomenon” and define “literacy in terms of mental states and mental processing“ (Gee, 2015, 35). This ideal of humans as autonomous, rational agents dominates Western social order and subjectivities, and is especially powerful - and consequential - in the health care system. A notion of health literacy as the capacity to obtain and process information and make informed choices exactly reflects this ideal. Yet, as Mol and many others have argued, the “the logic of choice” (Mol, 2008) is neither as empowering as it promises, nor does it appropriately describe and analyze human action – especially for the case of illness and suffering. Scholars of various disciplines have already widely criticized the presumptions and scope of “rational choice”, be it in anthropology (Lock, 1993; Mol, 2008), history (Erikson et al., 2013), political sciences (Amadae, 2003) or even in the hotbed of the rational agent, namely in economics (Giocoli, 2003; Mirowski, 2002). Finally, the “practice turn” (KnorrCetina et al., 2001) has overcome this methodological individualism and has turned social practices to the focus of analytical attention (Schatzki, 2002; Reckwitz, 2003). According to practice theory, what people know, say and do are neither the result of individual choices nor of structural determinants, but are embedded in and governed by social practices, by the “temporally unfolding and spatially dispersed nexus of doings and sayings“ (Schatzki, 1996: 89, see also Bourdieu, 1977). Research and theory on literacy has already long taken up praxeological theories and insights on knowledge and skills. The so-called New Literacy Studies criticize the assumption of a single literacy which labels whole sections of the population as illiterate; pointing out that this hides both power relations and the rich diversity of knowledge practices as situated in specific social realities. Thus, understanding “literacy as always embedded in and defined by institutional circumstances and cultural practices“ (Collins, 1995, 80), scholars began to examine literacy practices ethnographically as early as in the 1980s (Street, 1984; Heath, 1983; Collins, 1995). In studying reading and writing “not as something people did inside their heads, but as something people did in the world and in society“ (Gee, 2015, 35), these studies revealed literacy as a polymorphic social practice and inspired a wave of qualitative empirical studies (Street, 2005, 2013; Barton et al., 2000) that can offer a blueprint for rethinking health literacy. Accordingly, rooted in such a praxeological understanding of literacy and adopting a resource oriented view on health, I highlight the rich and creative knowledge practices and experiences of patients concerning health and healthcare. In order to do so, I explore semistructured interviews on health with residents of superdiverse urban neighborhoods in Bremen, Germany, I look at health literacy (1) as a social practice that is shared and distributed in social networks, (2) as a form of agency that is situational and responsive to social context and (3) as being interwoven with and inspired by a form of knowledge that is widely ignored in Western health systems, namely somatic knowledge.

The ethnographic interviews were conducted as part of an interdisciplinary project “UPWEB – Understanding the Practice and Developing the Concept of Welfare Bricolage” conducted in Uppsala/ Sweden, Lisbon/Portugal, Birmingham/UK and Bremen/Germany. Its aim was to investigate health care bricolage, that is the ways in which residents of neighborhoods with superdiverse populations and sometimes difficult or restricted access to statutory health services “piece” or “cobble together” their healthcare, including self-treatment, help from relatives or friends, information in the internet (Phillimore, 2018). “Superdiversity” (Vertovec, 2007) is a demographic descriptor of the increasing population complexity in neighbourhoods that function as arrival zones for new migrants, house well-established minority groups, and is also home to an often impoverished majority group. Thus, superdiverse neighborhoods are an ideal field for the study of health care in times of globalization and epitomize the tension between diverse forms of knowledge and a standardized health literacy. The project was approved by the respective local ethics committees in each country (for project details see Phillimore, 2018). For this article, I mainly draw on 42 resident interviews conducted between September 2015 and April 2017 in two superdiverse neighborhoods in Bremen. Moreover, we visited health related community centers, interviewed 20 healthcare providers in the neighborhood and did participant observation in the local A&E (Samerski, 2016). During the recruitment of the interviewees, we aimed at a maximal possible diverse sample regarding migration experience, residence permit status, income, sex, education, age etc. To increase the chance for informative interviews, we conducted preliminary conversations with possible candidates and prioritized interviewees with actual or recent health concerns, including two refugee families with disabled children. We collaborated with trained community researchers who recruited almost half of the interviewees, served as interpreters during nine of the interviews and also translated the ensuing interview scripts. Half of the interviews took place at our interviewee's homes, the other half at local community centers with which they were familiar. The guided interviews were narrative and open ended and lasted between an hour and 2.5 h. The interview guide starts with opening questions on health in general, e.g. on practices of health maintenance. Its main sections ask about recent health concerns and for details of people's actions, support, knowledge, information seeking, health care usage, experiences etc. During most of the interviews, we drew timelines visualizing the process of seeking help or self-help. Our youngest interviewee was 27 years old and the oldest 87. Twenty-two of the interviewees were female and 27 were first or second-generation migrants. The migrants' length of residence in the study neighborhoods varied from a few months to up to 30 years. Two of the interviewees did not have a residence permit. All interviews were recorded and transcribed in full. For our analysis, we used a shared codebook devised between teams in the four countries and MAXQDA software. We identified codes on the basis of the overall research issue, namely health care bricolage (Phillimore, 2018), as well as through the systematic thematic analysis with a focus on personal experiences, narrated actions and motivation. Thematic analysis involves categorizing qualitative material according to its content and sense, to discern patterns of meaning recurring across interviews (Braun and Clarke, 2006, 2014). All names used in the following sections are pseudonyms. 5. Creating meaning: health knowledge in social networks As has been shown in some studies, people who search for health information on the internet are not only interested in “facts”, but also look for comfort, orientation and social support (Doyle, 2013; Mol, 2008). Similarly, most of our interviewees did not regard their health concern primarily as a problem to be solved with the help of 3

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but also gives advice that fits Bonny's orientation and circumstances. This kind of fittingness is central for Bonny when she looks for help. When she had constant and restraining pain in her hip, she did not go to see an MD, but asked another friend for a good local osteopath. Firstly, because she trusted her friend's advice, and secondly because she considered an osteopath's approach to be more appropriate for herself and for her concern than an MD's: “There I thought, that fits better. Fits better to me, fits better to my complaints.”

information, but rather as a reason to turn to friends and relatives. As long as their health concern was not too urgent or they did not consider it life-threatening, many of our interviewees primarily talked to someone from their immediate social network to seek advice. Leonora, for example, who at the time of the project was studying Public Health and was well versed in how to navigate the medical system and how to search for health information, reported that she first talks to her family: Leonora: As I'm studying public health and am well-informed about certain things (laughs), where one can go … Well, first I of course ask my mother (laughs) when there's something wrong with me or my husband's dad or so, he's a doctor. Firstly, within the family circle.

7. “Being in good hands”: mediating expertise and needs Another term that pops up as a crucial aspect of trust, help and advice seeking is “being in good hands”, in German “aufgehoben sein”. When Leonora complains about a doctor who did not treat her well, she says: „I didn't feel that I was in good hands at all, because I felt more like a number.” What this means becomes clearer when she explains why she now travels to the doctor in her former hometown: “Because he knows me well, he knows my history”. He knows, for example, that she had a serious knee problem many years ago. Leonora explains that the doctor who treated her as a number did not diagnose her well. Her hometown doctor carefully examined her painful knee. “Being in good hands” has both a social as well as a medical dimension. “Being treated as a number” or “not being taken seriously” is a common complaint in our interview material. Other studies have shown how disembodying and alien medical jargon leaves patients discontented and powerless (Chapple et al., 1997); that patients experience depersonalized treatment as a threat to their personal identity and highly value physicians' listening skills (Boudreau et al., 2008). Many of our interviewees made great efforts to find a doctor with whom they felt to be in good hands, a doctor who – to use Bonny's expression - fits. However, people with language barriers and low “cultural health capital”– which are “social, interactional, cognitive and dispositional resources,” that enable patients to successfully negotiate with providers” (Shim, 2010, 11) - have less resources and opportunities to seek and generate this fittingness. For them, having personal support from friends and relatives to make things fit is a key issue. Kerstin, a TurkishGerman woman in her thirties, is regularly asked to accompany Turkish acquaintances and neighbours to doctors and clinics. She is not a health professional herself, but knows from experience how to navigate the system, how to inform herself, and how to communicate with doctors. People turn to her because with her they feel they are in good hands:

Her father-in-law lives in Cameroon and his ideas on health and healthcare differ markedly from her mother's. When she had stomach flu he recommended okra while her mother suggested dry food such as salt sticks and rusks. As she did not have okra at home, Leonora followed her mother's advice. When asked about her mother's source of knowledge, Leonora does not refer to “information”, but to experience: Leonora: Life experience. She got it from my grandma and then … Whether salt sticks and coke are really good for … well, that's also a myth (laughs), but one just does it because one thinks, Then I'll feel better.” As the quotation indicates, Leonora has incorporated two forms of knowledge: firstly, medical information that she has learned as a health sciences student, and secondly what has been handed down in her family. Despite her doubts – she describes and observes her health practices with some distance and seen from her public health perspective calls them a “myth” - she follows her mother's advice believing that it will help her. Leonora's explanations offer two insights. First, meaningful knowledge is passed on and realized in social relations. Leonora expects dry food to be helpful not because it is evidence based – seen in that light she expresses some doubts – but because it is her mother's advice. It is her mother who gives meaning and relevance to salt sticks and rusks. The same holds true for her father-in-law. She would also follow his advice, even when it is foreign to her, again because the social relation makes it relevant and meaningful. Second, knowledge on health has heterogeneous sources and therefore is multidimensional. Leonora would presumably be characterized as being very health literate according to conventional definitions, but scientific health information is not her only source of knowledge or of action. She also trusts health knowledge that is rooted in communal experience and transmitted through personal ties. In this sense, her health literacy is a bricolage of different forms of knowledge.

Kerstin: I‘ve heard from those who call me that with me they had the feeling they were in good hands. (…) Kerstin stresses that she is appreciated because she listens to her acquaintances and takes their needs seriously. But she also indicates another reason: she displays expertise and assumes agency on behalf of her supplicants. She is not a passive translator, but actively mediates between the demands of the medical system and patients in their concrete circumstances, a practice Raymond (2014) calls “epistemic brokering”. As Kerstin explains, she mediates in both directions; she gives advice to patients but also influences doctors. This is of particular importance for patients who do not easily “fit” to the medical system, such as elderly Turkish migrants who are not proficient in German. They literally have no voice when faced with a German doctor and oftentimes behave in a manner they think the doctor expects from them: Once Kerstin's father underwent an incorrect procedure in hospital because doctors did not check his referral letter. The old man apparently simply obeyed instructions: “of course he does it, he functions, because he thinks he has to,” as Kerstin explains. Kerstin however is used to arguing with doctors and finally interrupted the procedure. This anecdote shows that “fittingness” and “being in good hands” emerge from social relations that take effort and agency to be realized. Through Kerstin and with her, patients gain knowledge and agency just as Kerstin performs as a skilled healthcare mediator both through her relation to her neighbours and their concrete situations.

6. Making sense of information: the importance of “fittingness” The majority of our interviewees indicated that in health matters their primary source of advice is a trusted person. They do not expect objective information, but rather orientation, support and actionable advice. As studies on advice seeking in the health context have shown, what people consider most useful is a mixture of opinions, concrete information and experiential knowledge (among others Nettleton et al., 2005; Suzuki and Calzo, 2004). In contrast to information, experiential knowledge - as Borkman defines it in the context of self-help groups - is “truth learned from personal experience with a phenomenon” (Borkman, 1976, 446). In contrast to objective information, advice or knowledge based on experience and given within a trusted relationship is personalized, it is appropriate or “fitting”, as one of our interviewees explains. Bonny, a mother of two adult daughters in her fifties and an academic researcher on health issues, is lucky to have a health professional in her circle of friends: Her best friend is a GP. When she needs help, she simply calls her: “And when I then notice, I can't deal with it, it's getting worse, or it's not going away, then I call my friend”. Both Bonny and her friend believe in alternative or holistic approaches to health. Her friend is not simply a source for information, 4

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8. Co-producing situated expertise

daughter's life, she explains, and reports how her older daughter once discovered the drug of another patient at her sister's bedside. For Layla this mistake was not an exception but symptomatic for the state of things in the hospitals: “It's not only that, it's many things! It's little things“, she comments, and explains:

Advisors and interpreters like Kerstin are important for health literacy and cannot be reduced to information brokers. Rather, they are facilitators or co-producers of knowledge (see also Penn and Watermeyer, 2012; Raymond, 2014). They do not necessarily have to assume agency on behalf of patients or to be present in the hospital or doctor's office. The example of Layla shows impressive gain in situated knowledge and agency through a variety of facilitators and resources. Layla was born and raised in Tunisia and is not proficient in German. Layla's daughter had suffered from sudden seizures resulting in a coma eight times over a period of three years and has since needed care. During the interview, she mostly spoke Arabic. Yet, Layla managed to learn enough about her daughter's condition and healthcare to be able to challenge doctors and treatment plans. Her daughter was in a bad state and Layla felt that she could not simply entrust her healthcare to the medical system. Furthermore, her Imam encouraged her to become an expert on her daughter's health. Meeting a young Tunisian medical student who supported and encouraged her to search for information on the internet was crucial for her empowerment:

Layla: ( …) They don't have time to control the medicine, to supervise everything. I had to be there from morning till night. I had to check the medicine times, if they didn't give it I had to fight with them Thus, she acquired health knowledge in a concrete situation and with a clear goal: her knowledge practices are prompted by her distrust of the hospital and oriented towards her daughter and her wellbeing. They enable her to gain agency for the sake of her daughter. This situational dimension of knowledge practices can also be seen in our other interviews: Musikus, to whom we will turn later, who studied medical texts on digestion after he found no help at doctors, or Veronika, who found out on the internet that sometimes signs of appendicitis do not show in blood tests and challenged the doctor's misdiagnosis.

Layla: A Tunisian. We got to know each other. And always each medication, I say to the nurse, please write down the name for me here. ( …) I go to this woman, this Tunisian. And she explains. After a few times I also spoke with my husband. And she also said to me, well, you can also look on the internet. And I also spoke with my daughter (her healthy older daughter) and they always looked for, that is, for side-effects and well, sometimes and to that I spoke a lot with the doctors. There was a doctor who asked me ‚did you study medicine?’ because also I changed many medications. I told them to increase that medicine or decrease that one because there was a big problem with the flatulence. The senior doctor said no it doesn't affect the liver. I convinced the ward doctor that it does so.

10. Health knowledge has heterogeneous sources and is multidimensional All of our interviewees relate to different sources of knowledge when they talk about health and healthcare; some being “information” in the basic sense, e.g. medical facts from the internet, educational material or doctor's explanations; others being experiential, traditional or religious. Yet, all information sources are embedded in the social context through which they gain meaning. Kerstin, for example, who mediates between her Turkish acquaintances and the medical system, also asks her mother to pray for her when she feels really bad. In her religion, she explains, “everything is not necessarily an illness, but rather there's quite a lot of what comes from other people, that's what we say. (…) We have this word Nasar. (…) The evil eye.” Layla too does not see medical information as the only source of knowledge on health. She also tries other ways to enhance her wellbeing. When asked about alternative or natural healing approaches, she concedes that she regularly informs herself from the internet about the impact of food and herbs:

As a practicing Muslim, Layla got to know the young student in a local mosque. Like Bonny and her friend, the two women have a common background. They share language, home country and religion. At the same time, as a medical student, the young woman has the expertise to support Layla when she works on treatment plans and clinical procedures. Thus, Layla is empowered by the woman's expertise as well as by the quality of their social relation, by their fittingness. The interview examples demonstrate that knowledge on health is not an individual property, but is local, shared and co-produced in social relations. Thus, health literacy could be thought of as a potentiality distributed in social networks and actualized in concrete situations. Consequently, it is not necessarily the lack of certain knowledge and skills that makes people “illiterate”, but rather a lack of cultural health capital in social networks – or a lack of social networks at all. According to a gynecologist who practices in a superdiverse neighborhood and volunteers treating patients without health insurance and legal documents, the biggest challenge are patients who are socially isolated:

Layla: The doctor - ah that's with food, that's difficult he said. But I look always on the internet and I search for … I have many vegetables which help the liver. And that's why my daughter lives up to now, because I always give something in addition. As her statements show, she is certain that her efforts have had an effect, that they have even saved her daughter's life. Furthermore, Layla also cares for her daughter's spiritual wellbeing. This spiritual dimension of “healthcare” is as important to her as the medical or “scientific” one: Layla: I read Quran to help my daughter spiritually (…) Science and Quran are how I deal with this. I also pray to God.

Rotenhan: this complete speechlessness is so to say something that, that now with this wave of asylum seekers and refugees from Syria or wherever is just emerging, because they come here without any (..) kind of network

Her narrations show she combines different sources of knowledge and different practices of care. Neither her care concerning food nor her religion are accepted in the medical system. Layla mentions nurses who insisted on liberating her from her headscarf – an attempt which she experienced as discriminating. Yet, through all these different sources, from the Imam and the Quran to the medical student and information from the internet, she gained the agency and multidimensional knowledge on health that she needed in order to fight for her daughter's survival.

9. The local and situational nature of health knowledge If Layla were to participate in the EU-HLS, she would perhaps be diagnosed as deficient in health literacy. Layla's skills and knowledge are specific and situational and have a clear objective – they are the consequence of practices related to her daughter and triggered by her experiences in the medical system. Layla realized that her daughter was not always “in good hands”; that she could not leave her daughter's healthcare fully to doctors and nurses. A small mistake might cost her

11. Health information and somatic knowledge In several of our interviews, the gulf between our interviewee's own 5

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read about appendicitis without inflammatory blood parameters and suggested this possibility to the doctors:

knowledge on their health and the diagnosis or treatment of doctors which they experienced as futile or inappropriate, instigated their active search for health information. Their own knowledge, however, was not primarily medical and cognitive, but rather embodied or somatic. Since practice theory analyzes the body as an important medium of social practices, forms of knowledge beyond the cognitive and discursive come into view. This approach finds resonances in recent developments in cognitive sciences and psychology, where a new field of study and discussion has been ignited — under the umbrella of “embodiment” — on the corporeal foundation of perception and the connections between body and psyche (Glenberg, 2010). This is especially important when it comes to health and illness because they are mostly experienced as physical pain and distress; hence in health matters, the body becomes an important object, medium and source of knowledge. Somatic knowledge is not the same as biomedical knowledge on the body as a scientific object. In the life sciences, the body has been reduced to an anatomical object, or rather, with molecular biology and big data, to a scientific construct based on laboratory results, high-tech pictures and data – way beyond somatic experience. In a parallel way, the rational and disembodied self tends to be the gold standard in health literacy research and action plans (Lock, 1993). Consequently, other forms of knowledge such as somatic experience and “gut feeling” (Gigerenzer, 2008) about health and healthcare are routinely excluded from healthcare and health literacy. Thus, patients have to adapt their knowledge to medical standards when they want to be heard. What is not compatible remains silent – sometimes with severe consequences. In our interviews, the conflict between disembodied medical expertise and patients’ embodied suffering and experiences emerges several times. Goldi, a young Turkish-German woman, suffered a stroke from an aneurysm. Since then, she is severely disabled and wheelchair dependent. A day before her stroke she presented at the local A&E department complaining of a very bad and hitherto unknown headache. The doctor at the A&E, however, sent her back home without conducting any detailed examination:

Veronika: Then they examined me, didn‘t find anything again. (…) And then I asked “Is it possible that I have appendicitis?” And the doctor said “No, it doesn't look like appendicitis.” Whereby I myself have already read on the internet. Everything that I had, nausea, vomiting, this pain … I had exactly that pain. And she said “No, it doesn't have to be appendicitis. Blood is normal. One can't see anything in the blood.” And then I myself read again on the internet that one doesn't always see it in the blood.” Veronika searched for information because she did not trust the doctor's diagnosis – she knew that something was wrong with her. Luckily, the information she had found helped her to communicate with the doctors and challenge them. As a consequence, the A&E doctors offered her a re-examination the next morning. When she was x-rayed, they saw that she indeed had appendicitis and she had an emergency appendectomy. In other cases, however, our interviewees had experiences which do not correspond to biomedical information. Musikus is a musician raised in Turkey and has lived in Germany for 40 years. He has an academic background and speaks excellent German. After having taken strong antibiotics against Helicobacter, he went through two health crises related to food and digestion. During the second crisis, he was unable to work for many months and felt close to death. Facing helpless doctors, Musikus decided that he had to help himself and started to study a medical textbook on digestion and to search for information on the internet. For him, this was an act of necessity: Musikus: It is a matter of life and death. I had to inform myself, of course. But well, I'm of course not a scientist. And I only selected the topics that were important for my survival (laughs). I now also know them as you've probably noticed a bit. About digestion and then also enzymes. He managed to improve his digestive problems during his first crisis through massaging, but during his second crisis some months later his headache remained bad; test results were negative and doctors had no clue what was wrong with him. Musikus started to investigate his life circumstances like a detective and scrutinized his food purchase after his usual supermarket had closed and he had to change. It struck him that many of the products he consumed contained additives marked with “E”. Finally he assumed that the E-additives must be the cause for his bad head and started to avoid them strictly – with success:

Goldi: The previous weekend, before it happened, I was taken to the (local hospital) by ambulance because I had a terrible headache. I also noticed that the headache was different, it was tingling. I even wrote to a friend, I think I'm having a stroke. Then I was at the hospital, they didn't even examine me properly there. And they probably thought, okay, still very young, what could possibly happen? Gave me painkillers and sent me home. Goldi, who worked as a social pedagogue in the health field, was not able to raise her voice and question the doctor's actions. The A&E's triage system asks patients to assess the severity of the pain quantitatively, but not qualitatively. Thus, experiential knowledge about the severity and threatening nature of her distress had been ignored as a matter of principle. Before Goldi suffered a stroke, she had had repeated headaches which her GP attributed to stress. Goldi says she always knew that stress was not the cause. In retrospect, her GP now concedes that Goldi is very knowledgeable:

Musikus: I felt miserably worse. For months. What's wrong with me? Then I said “Okay Musikus, it's the E's. Because you are very healthy, so to say, biologically. If you are so ill, well, then it's the pressure. And these additives lead to the increased pressure. (..) Exactly. And then gradually, after three months after I had stopped eating E‘s I was healthy. Musikus knows well that his experience was not professionally acknowledged: “But whom do you tell that? Because they are legally permitted. No one would believe you normally.” Nevertheless, Musikus kept trusting his experience. Many months after his recovery, he found a piece of information that vindicated his interpretation: In a Turkish article, a scientist warned that E-additives can affect the head. Finally, Musikus saw his view confirmed. Musikus expertise and ability to treat himself display many of the characteristics of health knowledge that in this article have so far been carved out of the interview material: his health literacy is situational, specific and multidimensional. After his experience, however, he stresses the importance of somatic knowledge:

Goldi: Now she says you are a phenomenon, you are very knowledgeable. I always told her that it wasn't stress. One knows oneself, isn't it? “One knows oneself” – with this utterance Goldi does not refer to biomedical information on headaches, but to her somatic knowledge. This crucial dimension of health knowledge is mostly ignored in medical practice (Duden, 1991; Duden and Noeres, 2002) and almost completely ignored in current health literacy definitions and surveys. Yet, as our interviews show, it informs people's knowledge and actions in health matters to a large extent. Another example is Veronika, a young woman who emigrated from Russia several years ago. She went to the A&E three times because of severe sickness and stomach pain but was always sent home without a proper diagnosis. On the internet she

Well, I'm now wide awake regarding issues concerning the body. If I discover anything then immediately correct it. It doesn't matter what, what the rest of the world says. I don't give a care. For me it's 6

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In order to take the resource approach of health promotion seriously and to improve the power balance between service providers and users as demanded by the WHO, the results of this paper suggest a direction for future health literacy discussion and research. Following the redefinition of literacy through the New Literacy Studies, the concept of health literacy could be expanded to include the multidimensional knowledge practices that enable people to care for themselves and for others. This expansion could not only strengthen patients’ knowledge of the health system but also inspire health professionals and health institutions to adapt their procedures to different health literacy states by giving patients a voice, acknowledging their social realities and collaborate with them as equals. As the concept of patient centeredness gains relevance in medical practice, providers do increasingly orient their services toward patients. Yet, if this patient centeredness is to be effective the heterogeneous and multidimensional knowledge of patients has to be taken seriously. This, in turn, implies the fuller inclusion of patient (or user) perspectives (Guzy et al., 2015) and for strongly participatory health research (Cacari-Stone et al., 2014). This article shows that the discussion of health literacy can benefit from ethnographic research on the ways in which patients seek help, experience advice and services, co-produce health knowledge, and gain agency in and through social relations. The ideal of patients as individual informed decision makers relies on an outdated model of human action that originates from the widely challenged rational choice theory. So-called rational models of thought and action may conform to the basic assumptions underpinning an economized healthcare market, but they do not capture the social reality of those who suffer from ill health and struggle with service options, medical information and institutionalized care. In order to increase the “fittingness” between the medical system and those needing help, it seems vital to not only inform patients, but to also enable the medical system to take patients seriously and be attuned to their experiences and knowledge.

very important what my body says. That's my only source. As the interview excerpts show, the body is a widely ignored but important source of knowledge. Many of our interviewees “listen” to their body and to some extent trust their senses. This kind of somatic knowledge is an important driver for health-related action, be it going to the doctor or searching for advice and information. Furthermore, as the examples show, somatic knowledge can also be crucial for finding the appropriate diagnosis and treatment. 12. Conclusions In questioning the concept of health literacy as set of decisionmaking competencies that can be upgraded by information and education, I have highlighted the rich variety of health and knowledge practices of people. I examined ethnographically the health literacy in a superdiverse urban neighborhood characterized by widely different social and cultural backgrounds. Health literacy emerges as a situational, dynamic and multidimensional social practice that is embedded in networks of “doings and sayings”. In accordance with other empirical studies analyzing health literacy as a social practice (Papen, 2009), I showed that even those persons who might be diagnosed as lacking health literacy, succeeded in accessing health information and making sense of it by mobilizing social relations and networking. Information seeking and health-related actions were strongly determined firstly by concrete situations and the perceived need to gain agency, and secondly by interpersonal relationships with informal or professional helpers. Another important dimension of health knowledge and a key driver for action proved to be embodied experience and somatic knowledge. Fairbrother et al. (2016) have shown that children when making sense of – sometimes competing – health information strongly relate to their embodied experience. Referring to Nutbeam, authors call this a “pertinent example of critical literacy“ (Fairbrother at al. 2016, 482), since children assess the meaningfulness of information by attuning it to their embodied experience. This kind of critical health literacy was also pertinent amongst our adult interviewees. More than half of our interviewees explicitly talked about listening to their bodies and taking their somatic knowledge seriously, e.g. the certainty that something is wrong with them. They struggled to find health information that fitted their experience and for recognition in the medical system. This crucial dimension of (critical) health literacy has not yet been adequately studied. My findings are based on a qualitative empirical study in two urban neighborhoods with a superdiverse population in Northern Germany and backed up by another 120 similar interviews of my close collaborators in Uppsala, Lisbon and Birmingham. Particulars such as the sources of trusted health information, the kind and quality of supportive social relations and the characteristics of somatic knowledge differed among our respondents and certainly depend on cultural and social backgrounds. Yet, the significance of social and situational context and of embodied experience for health related literacy and knowledge practices is obviously generic. This insight dovetails with other empirical research that analyses health related knowledge not as individual skills or assets possessed by an autonomous agents but as social practices embedded in social networks, in embodied experience, and in issues of power and recognition (Mol, 2008; Papen, 2009). As Napier et al., 2014 have argued, there is no single and universal conception of “health” applicable to everyone. Ideas about health “vary widely across societies and should not merely be defined by measures of clinical care and disease. Health can be defined in worldwide terms or quite local and familiar ones“ (Napier et al., 2014, 1). Accordingly, there cannot be a single normative standard of “health competence” and “health literacy” against which people can be measured. Health literacy, as the WHO declares, is as a relational concept which is supposed to enhance communication and the “power balance between service users and provider, laypeople and specialists” (WHO, 2013, 26).

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