Lost in Translation?

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Lost in Translation?

How health literacy impacts refugees in Sweden

Elsa Bjursén May 2021

Supervisor: Nikolas Århem, Uppsala Universitet

This thesis is submitted for obtaining the Master’s Degree in International Humanitarian

Action and Conflict. By submitting the thesis, the author certifies that the text is from his/her hand, does not include the work of someone else

unless clearly indicated, and that the thesis has been produced in accordance with proper

academic practices.

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1 Abstract

The covid-19 pandemic has resulted in millions of lost lives, hundreds of millions ill, and an unwelcome interruption in our lives and in the world order. During the pandemic, we have been fed with massive amounts of information and regulations on how to act to reduce the spread of the virus. To properly make use of the information we receive, health literacy is needed. Health literacy is the basic reading and writing skills that enable us to obtain health-related information. However, the information we are given often requires advanced reading skills, contextual knowledge, and capabilities to process and adapt the information to personal situations. These are requirements that can prove challenging for individuals with little or no previous education.

This study seeks to answer how health literacy impacts the capability to access and process information, and how accessible information regarding the covid-19 pandemic is.

The study focuses on refugees, with little or no education studying at Swedish For Immigrants (SFI) track 1. Refugees are relevant to study as refugees are more socio- economically vulnerable, have been seen to be disproportionately affected by the covid- 19 pandemic, and can be argued to face greater challenges in accessing information. The study is done through a small number of interviews with individuals from the focus group.

The results indicate that the respondents have good knowledge of common symptoms and measures to avoid spreading the virus. However, the findings do show that the information material available on the Swedish authorities’ websites is too difficult to understand for someone with limited reading skills. This also applies to material that is claimed to be easy to read. Yet, the respondents do grasp the overall content due to pictures and illustrations. The findings are compared to a survey of information during the pandemic among non-fluent Swedish speakers conducted by MSB. The comparison shows support for certain findings from the interviews.

Keywords: Health literacy, refugees, education, covid-19, coronavirus, pandemic, communication, information campaigns, Sweden

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2

Writing a thesis is like going on a rollercoaster. You start the process with an idea that makes you excited and ready to go on an adventure and see where you end up. The writing challenges you, it brings you up and down. It can even cause you to question your choices in life. Towards the end, you might feel a little sick, ready to get off and move on to the next attraction. And hopefully, you have someone next to you through the entire process to cheer you on, push you to keep going and have the patience to deal with your doubts and questions.

I want to thank my family and friends for bearing with the endless discussions and reflections of this thesis for the past months, and for being there, in general, this past year.

And I especially want to thank my mother for giving me the idea for this thesis in November, even though I was hesitant at first.

I also want to thank my supervisor for responding to my questions and guiding me through the writing process.

Lastly, I want to thank the teachers, guidance counselors, and students at Säffle Lärcenter and SFI for their invaluable help with arranging interviews, translating, and answering my questions.

TACK SÅ MYCKET TILL

ALLA ELEVER PÅ SFI I SÄFFLE SOM PRATADE MED MIG.

JAG ÖNSKAR ER ALL LYCKA I FRAMTIDEN.

Elsa Bjursén

Uppsala, 27th of May 2021

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5 Chapter 1. Introduction

1.1 Background

The covid-19 pandemic. A small outbreak of a viral infection¹ presumably from a Chinese food market that quickly covered the world, leaving few unaffected. Suddenly, restrictions, lockdown, and “social” distancing ruled our world, and pandemic strategies were discussed around the dinner tables. Recent numbers from the World Health Organization (WHO, henceforth) show that over 150,000,000 people have been diagnosed with covid-19 and over 3.2 million lives have been lost to the virus (WHO, 2021). The pandemic is also believed to take additional millions of lives due to consequences such as delayed healthcare, mental health implications, and food insecurity because of closed borders (ILO et al, 2020). Additionally, the lockdowns will continue to impact future generations after forcing millions of children to prematurely end their education, leaving them vulnerable to negative coping strategies such as child labor, exploitation, marriage, pregnancies, and domestic violence (UNICEF, 2020). The pandemic’s economic and social development setbacks and consequences will take years to recover from.

One country that has been given much attention during the pandemic is Sweden.

Compared to neighboring Scandinavian countries, Sweden stands out with a high infection and death rate. Currently, more than 1 million people have caught the infection and 14,000 have died (Folkhälsomyndigheten, 2021 a). The Swedish pandemic strategy has both been praised and criticized. Choosing a more unique route to tackle the pandemic, aiming for a non-invasive approach. The strategy focuses on mitigation and

“flattening the curve”, slowing the spread of the virus to alleviate the impact on the healthcare system for it to function properly with enough resources (Ludvigsson, 2020:

2460). It also focused on implementing the right measures at the right time and minimal impact on the society as compared to other national strategies that focused on stopping the spread through lockdowns (Rambaree & Nässén, 2020: 235). The Swedish constitution does not allow enforced lockdown or restriction of individuals; therefore, the strategy has emphasized the actions and responsibility of the individual, enforcing

1Coronavirus is a group of 7 viruses that cause infections in humans (Katella, 2020). SARS-CoV-2 is the coronavirus causing the disease covid-19 with symptoms such as cough, fever, and difficulty breathing (ibid).

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6 recommendations rather than mandatory restrictions (Ludvigsson: 2464). Furthermore, the constitution also stipulates that the government can voice its opinion but cannot influence the actions of individual authorities, which is why authorities such as the Public Health Agency (henceforth referred to as FoHM, acronym derived from the Swedish name of the authority; Folkhälsomyndigheten), the National Board of Health and Welfare (Socialstyrelsen), the Civil Contingencies Agency (henceforth referred to as MSB, acronym derived from the Swedish name of the authority; Myndigheten för Samhällsskydd och Beredskap), regions and county councils have played a central role in the strategy (ibid).

In the middle of March 2020, covid-19 cases in Sweden increased quickly. It was soon indicated that an unproportionate number of confirmed cases were found in the marginalized suburbs of Stockholm, suburbs where most of the population are of immigrant descent (Rambaree & Nässén, 2020: 240). Structural factors such as overcrowding, culture, and socio-economic status were discussed as underlying reasons for the outbreak in the suburbs (Rambaree & Nässén, 2020: 240; Hansson et al, 2020: 1).

However, it was also found that the people living in these suburbs did not understand the information shared by Swedish authorities as the methods of communication were not adapted to these groups, and informational material was only available in either Swedish or English (ibid). It was not until September 2020 that information in 17 additional languages was posted on the PHA website (Ludvigsson, 2020: 2468).

1.2 Aim and research question

This thesis’ aims and objectives are to gain a deeper understanding of how individuals’

access and process health-related information during the pandemic, and how accessible the information distributed by Swedish governmental authorities is. The whole adult population of Sweden is too large to conduct a feasible and reliable study under the scope of this thesis. Additionally, the thesis must cover some aspects related to humanitarian aid and/or conflict. The population scrutinized in this study has therefore been narrowed down to refugees in Sweden with little or no education. This focus is relevant as it has been repeatedly stated that refugees are more vulnerable to be infected by the coronavirus due to language barriers, higher vulnerability to other health-related issues, cultural, and socioeconomic factors (Rambaree & Nässén, 2020: 240; Hansson et al, 2020: 1). The group of individuals with low education levels arguably face additional challenges in

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7 accessing information as they may have difficulties even in understanding information in their native language and even more so in Swedish. This will be further elaborated on in section 1.3 Research design, methodology, and data. The central concept of this thesis is health literacy, reading, and writing skills necessary to obtain and understand health- related information and can, thus, be impacted by education level (Nutbeam et al, 2019).

Health literacy will be further elaborated in section 2. Conceptual framework.

This thesis will therefore seek to answer the following question:

How does health literacy impact the capability to access and process information, and how accessible is information regarding the covid-19 pandemic?

1.3 Research design, methodology, and data

The following section will outline the methodology of the study, collected material, and the approach used to analyze data.

1.3.1 Research design and methodology

This study is a qualitative case study on health literacy among refugees with little to no education in Sweden during the covid-19 pandemic. I had to do some degree of primary data collection as the amount of research done on health literacy among refugees with little or no education is limited, and it is also a group that to my knowledge has not been mentioned in reports during the covid-19 pandemic. A limited number of interviews will, therefore, be conducted with individuals from the focus group. Surveys are often used for studies on health literacy; however, interviews are more appropriate for this study since surveys demand more complex skills in reading and writing.

I decided to divide the questions into three categories: background, knowledge about the pandemic, and information material. The questions for the interviews are influenced by the questions used in other studies (MSB, 2020 a). A complete list of the questions posed during the interviews can be found in the Appendix. The first category aims to give an informational background about the individual and their educational background, for example, where they are coming from, age, family, how long they lived in Sweden and studied at SFI, further explained in section 1.3.2 Population and selection. The first category also includes a question on how they live in order to understand if the person lives in overcrowded conditions, as such socio-economic factors also can affect the spread of covid-19. The second category aims to understand what the individual knows about

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8 the pandemic and how they have received information. There will also be questions regarding to which degree they can follow the recommendations based on their situation, to understand the possible influence of other socio-economic factors and the individual's critical health literacy (to be further explained in the conceptual framework). The last category will focus on what the individual understands from a sample of posters and texts that have been used to give information about the pandemic. Samples are gathered from the FoHM, MSB, Krisinformation.se, and Region Värmland, some have been on display in public and some can only be found online. The samples are either in Swedish or in their native language and have a varying difficulty level in order to understand how difficult a text can be before it is too complex. The interviews will be held in Swedish, in the presence of persons with knowledge of the respondent’s native language that can translate the questions if the need arises. At the selected SFI there are guidance counselors that can aid with translations and support to students speaking Somali and Arabic, therefore the interviews are limited to individuals speaking these languages.

The results from the interviews will later be compared to already existing studies made on health literacy among refugees in Sweden, and a study made by MSB on the media usage and adherence to covid recommendations among non-native Swedish speakers (Wångdahl et al, 2014; MSB, 2020 a). By comparing the results to other published studies, the reliability is improved, which is important especially in such a small study like this one (Esaiasson et al, 2012: 65).

1.3.2 Population and selection

As mentioned previously, the population for this thesis is refugees with little or no previous education. The 1951 Refugee Convention defines refugees as “someone who is unable or unwilling to return to their country of origin owing to a well-founded fear of being persecuted for reasons of race, religion, nationality, membership of a particular social group, or political opinion” (UN, 1951). Following these limitations of the population, this thesis will focus on individuals studying track 1 in Swedish For Immigrants (SFI, henceforth). SFI has three tracks (1, 2, 3), students are enrolled in the different tracks depending on educational background, where the level of difficulty gradually increases (Skolverket, 2004: 7). Students enrolled in SFI track 1 have no reading or writing skills and have generally not attended school, have studied between 0 to 5 years, or have a disrupted educational background (Skolverket, 2004: 8;

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9 Folkuniversitetet, no date). Since they have limited reading and writing skills one can argue that they also have limited health literacy (see Chapter 2). Hence why students in this track are the focus group of this study.

This is an example of a strategic selection with “most likely cases”. Strategic case selections are often made in small-N studies and studies such as this which is limited in time resources to enable generalization of the results (Esaiasson et al, 2012: 158). By using “most likely cases”, the theory is given the best circumstances to succeed (ibid: 161 f). If the results still do not support the theory, one can assume that the theory will not be supported in other conditions. For this study, this selection of cases means that if the respondents indicate that they understand and have received much information about the pandemic, other factors are likely to be the cause of the group’s vulnerability and not their health literacy level.

The precise selection of the respondents was not made by me. I indicated to the teachers in track 1 at SFI that I would like to interview 4-5 individuals. Given that aid with translation only was available in Somali and Arabic, the respondents had to speak either of these languages. And preferably there would be a balance in the number of respondents between the two languages. The teachers then introduced the idea to their students and asked if someone would like to meet with me and answer a couple of questions about the covid-19 pandemic. I ended up doing 6 interviews, 3 in Somali and 3 in Arabic.

1.3.3 Collected data

Since the covid-19 pandemic is a rather new phenomenon, most data used for this thesis will come from the period 2020 – 2021. Examples of data include communication strategies and information campaign material from Swedish governmental authorities, academic research as well as mass media articles. Statistics and data on the demographics of covid infections will also be included. Analysis of this kind of data will help to understand the accessibility of information, and to understand to which degree different groups in our society have been affected by the pandemic. The interviews are critical for this study as they will give insightful information on the experiences of individuals with little to no education. The combination of different materials related to the pandemic will aid in ensuring validity (Heale & Twycross, 2015: 66).

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10 Limited data is not an issue when studying the covid pandemic, it is rather the opposite. The pandemic has sometimes been called an “infodemic” due to the massive amount of information available (WHO et al, 2020). However, the spread of information also leads to the increased spread of false information and rumors which could cause more damage than good (Carrion-Alvarez & Tijerina-Salina, 2020).

1.4 Previous research

Health literacy is a well-researched topic. However, most research has been focused on quantitative studies and different models with which to analyze and estimate individuals’

health literacy levels. Wångdahl et al (2014: 2) express that there is a gap in health literacy research as qualitative studies are uncommon. Additionally, few studies on health literacy are done in Europe or the Scandinavian countries, and even fewer studies are conducted on refugees. Wångdahl et al (2014) conducted a study on refugees living in Sweden, however, their study included refugees of all educational backgrounds, whereas this study will focus on refugees with little or no educational background. Nevertheless, Wångdahl et al's study discovered that most refugees attending SFI (Swedish classes for immigrants) had limited health literacy (Wångdahl et al, 2014: 7).

Since the discovery of the new coronavirus in 2019, numerous studies have been made on the infection rate, risk groups, vaccines, restrictions, etc. To my knowledge, however, few studies have been made on the accessibility of information during the pandemic. One study has criticized information in the USA for being complicated and advanced, but none have been made from the perspective of education level and refugees or in the Swedish context (Szmuda et al, 2020: 22). Moreover, studies are indicating that refugees are more vulnerable to poor health and chronic diseases, factors that also increase refugees’ vulnerability to covid-19, which would increase the importance of information accessibility to these groups (Wångdahl et al, 2014: 1). It would therefore be interesting to combine these perceived research gaps and study how refugees with little or no education access and comprehend health-related information.

A study made by Hansson et al (2020: 1) on the mortality rates during the covid-19 pandemic showed that people born in Somalia, Syria, and Iraq were overrepresented in the statistics and indicate excess mortality among these groups. The study mentions poor integration as a probable cause. Furthermore, Wångdahl et al’ study (2014: 7) on the

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11 health literacy level among refugees in Sweden found that individuals with little or no education and individuals born in Somalia were more inclined to have low or inadequate health literacy levels. This study could reach similar results, meaning that education level and nationality, especially for individuals from Somalia, have a strong correlation to health literacy and thus the ability to obtain and understand information related to the pandemic.

1.5 Relevance to humanitarian action

According to Malloy, as cited in Rambaree and Nässén (2020: 241), is the right to information the core human right in fighting disasters such as a pandemic, and discrimination of this right can have fatal consequences. Moreover, health literacy is critical for public health. Lack of understandable, timely, and relevant information for all groups in our society is, therefore, a failure in protecting our society as a whole and vulnerable individuals, in this case, refugees with little or no educational background.

Understanding how these individuals obtain and process information during a pandemic, or other crises for that matter, is important in planning future emergency communication measures. It could also be helpful in other humanitarian contexts where it is necessary to reach people with limited reading and writing skills. Additionally, the Sustainable Development Goals and Agenda 2030 target 4, and especially 4.6 aims at ensuring “all youth and a substantial proportion of adults, both men and women, achieve literacy and numeracy”, a goal that is incredibly relevant for also improving health literacy (UNESCO, 2020). Currently, 86% of the adult population in the world is estimated to be literate, however in areas such as sub-Saharan Africa the literacy rate is only 66% (ibid).

1.6 Limitations

There are some limitations for this study to take into consideration. First, the study is conducted under the time limitations of a 15-credit master thesis, meaning that the study must be completed over approximately two months. The time limitation implies that the study must be a “small-N” study. This means that few individuals are interviewed, or a very limited number of cases are studied. However, this opens the opportunity for more extensive research in the future. Secondly, the current covid-19 recommendations complicate matters of for example conducting interviews. Possible interviews must be held with the appropriate distance between me and the respondents, or through digital

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12 devices, and I think we all are familiar with the pros and cons of digital meetings. Also, additional time for interviews must be prepared as respondents will not be allowed to attend the interview if showing any symptoms, instead, an alternative date will be set for make-ups. Third, the persons helping with translation during the interviews are not qualified interpreters which means that they are not obligated to convey an exact translation. This means that I will not be able to use any direct citations from the interviews in the study and that there is a risk that certain points are missed in the translation.

1.7 Ethical considerations

Seeing that interviews will be conducted as a part of this study there are a few ethical issues to consider (Sanjari et al, 2014). First, all participants will be anonymous, informed, and voluntary. Secondly, the participant's dignity will be respected in the phrasing of questions. Besides stated aspects, the author is not aware of conflicting interests or positions.

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13 Chapter 2. Conceptual framework and literature review

This chapter will define, describe and analyze critical concepts for this thesis.

2.1 Health literacy

Health literacy can be argued to be an umbrella term. This means that it is one central concept with sub-categories. The American Medical Association's Ad Hoc Committee on Health Literacy (1999) as cited in Baker (2006: 878) argues that health literacy is “the constellation of skills, including the ability to perform basic reading and numerical tasks required to function in the health care environment”. Other authors concur with this definition (Institute of Medicine, 2004; Nutbeam et al, 2019: 1). Health literacy can also be researched from a public health perspective in which the focus lies on how individuals and groups can make decisions based on obtained information that can benefit the community (Schillinger, Tran, Fine, 2018: 2). The consensus is that health literacy is the individual capacities used to understand and use information that is connected to their health and well-being. However, Baker (2006: 880) also argues that besides individual capacities, health literacy is determined by the health care system. Thus, health literacy level is the result of the individual and the system in which the individual functions. I assume, therefore, that an individual could have high health literacy in one context but inadequate in others. This point is supported by Baker (2006: 878) as he writes that health literacy is a dynamic state, capacities can alter depending on time, place, context et cetera.

For refugees, this is particularly relevant as the adaptation to a new society, culture, and language takes time but that does not mean that they will always struggle to obtain and understand information. Moreover, neither does it mean that they are completely health illiterate as their knowledge might be adapted to a different context. It could even be that a person’s health literacy level can vary within a country when in different settings and cities. It all depends on the amount and quality of information available, and the service provided to individuals who are more challenged to access the health care system, which can differ between regions as they have different resources.

Nutbeam et al (2019: 4) argue that health literacy can be divided into three categories that build on each other and gradually advances the concept as a kind of continuum;

functional, interactive, and critical health literacy. Functional health literacy is the standard conception of basic reading and writing skills to be able to read labels and leaflets and to fill out forms. Hence, to have basic functionality in the health care system.

Interactive health literacy takes it one step further. This concept includes more advanced

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14 cognitive and social skills to be able to actively participate and to understand and apply health care information to everyday life and changing situations. Critical health literacy encompasses all the underlying capacities but also includes the ability to critically evaluate information and understand how to adapt new information to one’s personal circumstances. I would also argue that critical health literacy more than any of the other categories can be connected to and affected by socio-economic factors.

Recommendations to, for example, not live under overcrowded conditions, or to eat more fruit, vegetables, or sustainably produced food, or to maintain a sustainable balance between work and personal life can be difficult to incorporate in one’s life if economically challenged. To be able to adapt information and recommendations for improved health to personal circumstances could therefore not always be possible. This is particularly relevant for migrants and refugees as “the link between socio-demographic conditions and health is stronger for migrants than for the native population” (Lebano et al, 2020:

5). Migrants are often more vulnerable to health-related issues, and conditions tend to deteriorate during the settlement period (Lebano et al, 2020: 3). This can be related to socio-economic factors, discrimination, employment conditions, and access to health care (ibid). And as stated above, health literacy is the result of both the individual and the system, hence, socio-economic factors can negatively impact health literacy and in particular critical health literacy.

There are two additional categories of health literacy that are relevant for this study, media health literacy, and eHealth literacy. These categories are narrower as they specifically address the information available through mass media or other online resources (Levin-Zamir & Bertschi, 2018: 2). Today, most of the information is searched and accessed through the internet. The increasing digital environment has also called for updated concepts of health literacy that can be applied to the new reality. Accessing information online can be complicated and demands a higher degree of critical assessment from the individual due to the prominence of “fake news”, which increases the need for both functional, interactive, and critical health literacy. Messages in mass media can contain both implicit and explicit meanings, which is more demanding on the reader as it requires them to have the capacity to read between and beyond the lines (ibid). Levin- Zamir and Bertschi (2018: 4) further argues that information online should be interactive and less dependent on formal literacy and fluency in the local language, using for example animations. Additionally, Szmuda et al (2020: 21) argue that as individuals often first

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15 consult the internet when looking for information, the accessibility and readability of the material is critical. Szmuda et al (2020: 22) also found that the readability of covid-19 related material online is far too difficult for the general population to understand and must therefore be even more difficult to access for individuals with low health literacy.

Levin-Zamir and Bertschi (2018: 5) also found that eHealth literacy is negatively affected by age, education level, and gender. Older individuals, men, and individuals with low education levels experience lower eHealth literacy.

2.2 Communications model

Another approach to understanding how information is obtained, processed, and applied is through communication theories and communication models. To find an all- encompassing definition of communication is easier said than done and finding theories for communication is even more so. The concept can aside from literary studies also be researched both from scientific, humanities, psychological, and medical fields. However, the most comprehensive definition, in my opinion, is the Cambridge Dictionary (n.d). The dictionary defines communication as “the process by which messages or information is sent from one place or person to another, or the message itself (…) the exchange of information and the expression of feeling that can result in understanding”. This definition indicates that communication is a process of conveying a message, it can also imply that communication and its message can be understood differently by the receiver compared to the sender. This is where the communication models come in.

One of the most famous communication models, see Illustration 1, was developed by Claude Shannon (1948). His communication model is focused on engineering. The model explains how an information source produces a message which is transmitted through channels to reach the

receiver, who in turn de- constructs the information to be able to understand the message. Shannon further argues that the message does

not necessarily mean the same to the receiver as it did to the source. This can be explained by “noise” that enters the process and alters the signal, thus also the final output of the process. In Shannon’s model, noise is meant as something technological. But one can also

Illustration 1

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16 assume that the noise could be a previous experience or a misunderstanding that can alter the way the receiver perceives the message, which could also include low health literacy.

Shannon’s model was later adapted by Weaver to become more comprehensive and explain human speech, and not just engineering. However, the model is criticized by Lars Elleström (2018: 274) as not being quite adaptive to humanities and qualitative data.

Another, less complex communication model, see Illustration 2, was developed by Wilbur Schramm (Elleström, 2018: 274 f). The model consists of three elements: the communicator, the receiver, and the

message. The communicator (A) codes the message in signs, it is then up to the

receiver (B) to decode the message. However, de-coding a message could require a certain set of skills or knowledge of the context, the culture, and the society in which the message is coded. This is precisely why Elleström criticizes Schramm's model, it is not complex enough and therefore misses vital aspects of the communication process.

To make up for the gap in previous models, Elleström (2018: 282) developed a new model, see Illustration 3, with

some inspiration from other models of communication. The model considers the meaning of information, and both explicit and implicit. Elleström’s model displays an act of perception parallel to the transfer of information. The model also indicates that there is a process within both the producer and the perceiver’s mind in which the message is processed, Elleström calls this the cognitive import (ibid: 279). As stated above, there could be a gap between how the producer and the perceiver perceive the message which can depend on numerous reasons including experience and cultural understanding. It could also be affected by a lack of understanding of how different individuals process information. Furthermore, the producer of the message might construct information based on what they would understand or think that the general public would understand, not the minorities. This can explain why it is more difficult for refugees to comprehend information from authorities during the pandemic.

Illustration 2

Illustration 3

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17 2.3 Hypothesis and expectations

Based on the above review of existing literature and concepts on health literacy and communication I expect that the respondents will have limited functional, interactive, and critical health literacy. I also expect that less education will mean more limited or inadequate health literacy. I also assume that individuals who have lived in Sweden for a longer amount of time will have a slightly better understanding of health-related information due to the contextual knowledge that comes with living in a society for a longer period. I also expect that explicit information combined with animations or pictures will be more accessible and understandable for the respondents, but different cognitive imports as argued by Elleström (2018) can result in different interpretations of material and pictures.

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18 Chapter 3. Results and analysis

In this chapter, the results of the interviews and the secondary data will be presented.

3.1 Interviews

A total of 6 anonymous interviews were conducted in Säffle on April 21^st and April 28^th, 2021. A list of the questions can be found in the Appendix. I want to underline that the interview was conducted with help from two people that spoke either Somali or Arabic.

These people are not qualified interpreters and are therefore not obliged to translate the respondents literally but rather gave a summary of what the respondents said. Therefore, I cannot use any quotes in the presentation of the results from the interviews. The interviews will be analyzed and presented through the three themes: background, knowledge about the pandemic, and information material.

3.1.1 Background Question/

Respondent

1 2 3 4 5 6

Age 45 30 34 50 33 42

From Somalia Syria Somalia Syria Somalia Syria Speaks Somali,

Swedish, little Arabic

Arabic, Swedish

Somali, Swedish

Arabic, Swedish

Somali, Swedish

Arabic, Swedish

Time in Sweden

7 years 5 years 7 years 5 years 6 years 3 years Family 2 kids 6 kids +

husband

6 kids + husband

10 kids (2 in Sweden)

4 kids + husband

7 kids (5 in Sweden) +

husband Rooms in

apartment

3 rooms 5 rooms 4 rooms 4 rooms 3 rooms 3 rooms Time at SFI 2 years 3 years

(time off for maternity leave)

2-3 years (time off for maternity leave)

3 years 1 year 3 years

Previous education

None To 2nd grade

None To 4th grade

3 years To 6th grade

Table 1

The initial questions of the interview aimed at creating a picture of the person’s private life and background. As can be seen from Table 1 above, there were 3 respondents from

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19 Somalia and 3 from Syria and their native language was either Somali or Arabic. The respondents were all females with an average age of 39 years old. Most respondents had more than 4 children, and Arabic-speaking respondents tended to have more children than the respondents from Somalia. However, not all respondents had their whole families with them in Sweden.

The Swedish standard defines overcrowding as a situation when not every person in the household “has their own bedroom, apart from adult couples who can share a bedroom” (Riksrevisionen, 2019). Although the Swedish standard has been criticized for missing extreme overcrowding and that the standard of one room per child is too generous and not relevant in today’s society (ibid). Based on the Swedish standard, one can argue that all but two respondents are living in overcrowded conditions, which is a risk factor for covid-19. However, following the UN Habitat definition of overcrowding as a situation that “occurs if there are more than three people per habitable room”, none of the respondents would be considered to live in overcrowded conditions (WHO, 2018).

Furthermore, most respondents have lived in Sweden for 5 to 7 years, one individual had stayed in Sweden for 3 years. They had studied at SFI for a maximum of 3 years, and some had had interruptions for maternity leave during their time at SFI. Some individuals claimed to have more education, so much so that they strictly would not be considered low educated. However, this education could be of varying nature for example Quran school, which does not equal education in traditional primary or secondary schools. And as they are enrolled in SFI track 1 I will consider them as individuals with little or no education. Lastly, the respondents from Somalia tended to have less previous education than the respondents from Syria.

3.1.2 Knowledge about the pandemic

For this subchapter, I will present the findings in different segments. First, the general knowledge of covid-19 is conveyed by the respondents. Second, how they access information about the pandemic and whether they trust or understand said information.

Third, the measures they have taken, if they have had or have been tested for covid-19, and if they know what to do if they get ill.

All respondents knew of the pandemic and most of them also knew about the general symptoms of covid-19, such as sore throat, headache, and loss of taste and smell. Some

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20 of the respondents were more elaborated in their answers saying that it is a very dangerous disease that forces schools to close and that visits are not allowed if you need to seek help at the hospital. One respondent also mentioned the difficulties of distance learning.

The respondents were then asked how they have accessed information about covid- 19. Watching the news on tv was the most frequent answer, and most often news in their native language. Some expressed that they talk a lot about covid-19 in school and among friends. Other sources of information mentioned were Google, YouTube, and Facebook.

All respondents expressed that they trust the information they receive about the pandemic.

One respondent says that they trust the information because they use several sources.

Another respondent says that she does not completely trust the Arabic sources, which Arabic sources she did not trust were not mentioned, but they were her main source of information. However, the Arabic news she follows does mention that covid-19 is very dangerous, and she believes them on that point. A third respondent express that she trusts the information because her neighbor had covid-19, so she knows it is a serious situation and that you can get very sick. All but one respondent profess that it is difficult to understand the information about covid-19. Some mention that it is easier to understand in their native language, but understanding the Swedish information is very hard. One respondent expressed that she cannot read, so it is very difficult. She, therefore, gets help from her children and husband to understand. Another respondent says that she only understands the phrase covid-19 in Swedish news, but she does not understand anything further than that.

Several respondents stated that their lives have changed tremendously since the beginning of the pandemic. They all stress that they wash their hands more frequently and use hand sanitizer. This is one point I personally noticed as most of the respondents applied hand sanitizer before and after the interview. They all expressed that they try to keep their distance and are not as physical with friends as they used to. One of the respondents mentions that it is very stressful because there is a lot to remember, and she has many kids that she needs to make sure are behaving according to the guidelines.

None of the respondents have had covid-19, and neither had anyone in their family.

I found this very interesting given that Säffle Kommun, where the respondents live, had one of the highest increases of confirmed cases in Region Värmland during February (Region Värmland, 2021). Only one had gotten a test for covid-19, but she received help

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21 from someone that spoke Arabic to book an appointment. They all knew that you must get a test done and stay at home if you suspect you might have the virus. However, some expressed that they have had colds or other symptoms that could be covid-19 without getting a test because they did not suspect that it was covid-19 and did not believe they could get it. Though I do not believe that this is a unique phenomenon and nothing that was affected by their education level. Moreover, some stated that they did not know how to book an appointment, but they assumed that it was done over a phone call. Some of the respondents’ children had taken a test for covid-19, this had been booked by the children themselves upon encouragement from their school.

A week after I had completed the interviews, I had to take a covid-19 test myself as I showed some symptoms. To book an appointment online included many steps and following instructions that were not entirely clear. In Region Värmland, where I was at the time and the same region the respondents belong to, only self-testing kits are available.

To be able to take a test you had to have access to a car, and for some testing facilities, you had to have company that could retrieve and return the test for you. These are criteria that could exclude many people from getting tested. Furthermore, the instructions for the test itself were in my opinion incredibly complicated, and I believe that taking a test would be even more complicated for someone with limited reading capabilities for example the respondents of this study.

To sum up this subchapter, the respondents did have good knowledge of common symptoms of covid-19 and what measures one should take to avoid spreading the virus.

However, some respondents had shown symptoms but not taken a test as they did not think it was covid-19. The respondents explained that they access information from many different sources and in both Swedish and their native language. Some information and making appointments for testing was according to them difficult to understand, and in that case, they received help from family members or other people that speak their language.

3.1.3 Information material

For the information material, I showed the respondent one poster at a time and asked them to read it and tell me if they understand what the poster means, I also took notes of how

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22 they read it and if they appeared to struggle with certain words. I will henceforth present the findings in the order that I showed the posters.

One initial observation I made was how complicated it was to find information material from the authorities’ websites. There are often

several steps to take from the start page to the information, and even further steps to reach information in other languages or easy to read Swedish, and there are no pictures or illustrations whatsoever besides in the downloadable material.

Now, I went on to the authorities’ websites multiple times and learned how to search for the material I needed, and I am fluent in Swedish. But if a person is searching for information for the first time or if that person has limited Swedish skills the process to reach the correct information would arguably be complicated.

I began by showing a poster (illustration 4) from

Swedish authorities and the website krisinformation.se (MSB, 2020 b). The poster and other similar posters from the same producer have been posted in newspapers, on billboards, and on social media. There is not much text on the poster, it simply states that the situation is serious and that you must stay at home if you show any symptoms of covid-19, and for further information, one should consult krisinformation.se. I assume that the meaning is meant to be straightforward and accessible for all. All respondents had great difficulty reading the poster, especially the first phrase that says “läget är allvarligt” (the situation is serious). Some respondents assume that the poster is either about testing or vaccination, and I guess they assumed so because they have frequently talked about those aspects in school. Another respondent is confused by covid-19 and assumes that it is in English when told that covid-19 and coronavirus are the same thing.

I had been informed by the teachers at the school that they talk of covid-19 as corona, which can explain why the respondent did not connect the two terms.

Illustration 4

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23 The second poster (illustration 5) was from Region

Värmland (2020 a). The poster is a common poster to remind individuals to keep a 2-meter distance. Like the first poster, this poster does not have much text and is arguably meant to be easy to understand by everyone.

All respondents struggled with the text on the poster, some more than others. However, they all seemed to understand the meaning of the poster, mainly due to the picture. Several of the respondents identified the first and second posters as the most difficult to read and understand.

The third poster (illustration 6) came from FoHM (2020 a). The poster is in Swedish and directed at the general public to take appropriate measures to not spread the virus. I also found this exact poster displayed around the school where the interviews were held and where the respondents attend SFI. The respondents expressed that the text was very difficult to read. I noticed that most of the respondents only read the titles on the poster and did not attempt to read the main text. However, the respondents said they understood the information on the poster because there were pictures that explained the text.

Therefore, even the respondents who

professed that they cannot read the text at all understood the gist of the information.

Illustration 5

Illustration 6

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24 Also, the fourth poster (illustration

7) came from FoHM (2020 b). The fourth poster is meant to be in easy Swedish, and therefore targets individuals with less knowledge of the language, for example, refugees and immigrants. One initial concern that I discovered was that the information on posters 3 and 4 is not the same. The easy Swedish poster does not mention the importance of keeping a distance from others. There is little difference in the results from the previous poster.

The text is still difficult, and it takes a long time for the respondents to read, however, they state that it is slightly easier, possibly because the font is

larger with more space between the lines. Once again is the importance of the pictures highlighted by the respondents and the person aiding with translations, especially as there are individuals who say they cannot read the text.

The fifth poster was accessed through krisinformation.se (illustration 8), however, it says that the poster comes from Specialpedagogiska skolmyndigheten (National Agency for Special Needs Education and Schools) (2020). The poster is a so-called pictogram, using graphic symbols to transmit the message in combination with a simple text. This poster was easier for the respondents to read and understand.

Like previous posters, the pictures and illustrations are very effective to convey the message. Some words are more difficult for the respondents to read and understand, for example, andas (breathing), and människor (humans/people). One respondent asks

Illustration 7

Illustration 8

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25 several times if the poster talks of testing, and she thinks the meaning of the pictures is not obvious.

The last poster (illustration 9) came from Region Värmland (2020 b). The information on this poster was in multiple languages, including the respondents’ native language. Since it is in multiple languages one can assume that the information is aiming to be accessible to everyone living in Sweden and speaking any of these languages. Two of the Arabic-speaking respondents with more educational background read the text in Arabic without difficulty, and express that this was the poster they preferred the most as it was in their native language. The other Arabic-speaking respondent struggled with reading the text. She also struggled with interpreting the pictures, especially the picture symbolizing that old people are more at risk of getting infected. The respondent thought the picture

meant that old people shall call to make an appointment, which is an understandable interpretation as the picture is of an elderly lady holding a phone. Interestingly, the Somali-speaking respondents struggled with reading this text even in their native language. Initially, it took a long time for them to find the sentences in Somali, and I had to show all of them where it was. One explanation behind the struggle to find the text in Somali is that the language uses the Latin alphabet, the same as Swedish and English.

Because the languages use the same alphabet it could be easier for someone who is not completely literate in either language to mix them up, especially when they are written close together. They did, once they found the text in Somali, read slowly but understood the content with help from the pictures. However, one of the respondents reacted to the text and said something was wrong with it. This was nothing the other respondents reacted to, and she could not say specifically what was wrong. Translation errors are not uncommon in covid-19 information, so it could be that there is something wrong with the

Illustration 9

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26 translation (Kazmierska, 2020). One consequence of this can be that people lose faith and trust in the authorities (ibid).

Based on the results from the interview on information material I found that pictures are incredibly helpful for individuals who struggle with reading. However, the respondents did often think the posters were about testing or vaccinations, probably because they have heard much about those topics in school or elsewhere. Furthermore, the respondents found the posters with less text and fewer illustrations more difficult to understand. These were posters that presumably are meant to be easy to understand but require an ability to read between the lines. Moreover, the Arabic-speaking respondents found it easier to read in their native language, whereas the Somali-speaking respondents had much more difficulty to read in their mother tongue. All respondents did struggle to read most of the texts, many had to sound out the words and took plenty of time to read a short sentence. They needed to concentrate completely and take their time to read, which probably would not be possible if they, for example, were passing a poster in town or in company with their children.

3.2 Secondary data

MSB has conducted three large surveys to understand the efficiency of the authorities’

information campaigns during the spring of 2020. One of the surveys aims to research individuals who do not write or speak fluent Swedish, as this group has been left out from other surveys (MSB, 2020 a). The survey mentions one aspect that can be criticized, namely that the survey was conducted on the streets or areas where a high percentage is expected to access information through alternative routes. This means that few elderly people were interviewed. Additionally, it does not say what time of the day the interviewing team was on location. If the survey was conducted during a limited time of the day, the risk is that even more people were left out due to other commitments. Another limitation that is not mentioned in the presentation is that the survey was conducted in 8 of the 10 largest cities in Sweden, and in a limited area of those cities. This means that the survey is even more restricted as it misses people living in smaller cities and people living in the northern part of Sweden, as the cities included in the survey all are in the southern half of the country.

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27 The survey concludes that the adherence to public recommendations among people that are not fluent in Swedish is following similar trends as the general public (MSB, 2020 a). It is indicated that women are more adherent to recommendations than men, and common preventive measures are carefully washing hands and maintaining distance from others. However, the results indicate that individuals not fluent in Swedish do not have equal opportunities to work from home compared to the general population or in other ways are more affected by socioeconomic factors. Furthermore, it is indicated that the group is more worried about the situation than the general public. It is important to note that the survey was conducted in May 2020, a time at which the situation was quite new and chaotic, and it was frequently reported that immigrants were more vulnerable to the virus and could result in higher levels of concern in the group.

Another aspect that separates the group from the public is the confidence in how to act (MSB, 2020 a). About 25% of the respondents did not feel confident in how to act to minimize the spread, compared to approximately 15% in the public. I assume that this could have resulted from the lack of information available in multiple languages, the many different messages, and recommendations. On the point of accessibility, it is stated that only a smaller portion, 20%, of the group finds information difficult to access. I would contend and say that 1/5 of individuals is not a small portion and is something that should be further investigated. It is found that individuals from Syria and Somalia with lesser knowledge of Swedish and English tend to have more difficulty finding information. It is also indicated that these individuals also have less trust in authorities and are more worried about the consequences of covid-19. Furthermore, it is indicated that the difficulty in accessing information does not lead to any consequences. I would argue that this statement is highly debatable, as difficulty in accessing information could lead to failure in taking adequate precautions to reduce the spread of the virus. This can in turn lead to long-lasting injuries and even death.

A third aspect that the MSB survey highlights are that non-fluent Swedish speakers tend to search for information in a larger number of sources than the general public. It is also indicated that the group tends to advise sources that they do not trust as much, for example, friends and family, foreign news sources, and groups on social media (MSB, 2020 a). The survey argues that since the adherence to recommendations is high information evaluation and source criticism is common and frequently practiced.

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28 Another finding of the survey is that there is a high recognition of the authorities’

information campaigns. The respondents were shown campaign material in their native language, and it is concluded that 34% had seen the poster, 24% the short video, and 33%

had seen the banners, and a total of 48% had seen anything from the campaign (MSB, 2020 a). In the general public, the recognition was 63% for the poster, 59% for the video and 56% for the banner, and a total of 85% for the campaign. However, I am highly critical of the conclusion that the campaign recognition was high. Less than half of the focus group had seen anything from the campaign, and even fewer had seen the specific material. When compared to the general public the numbers are even more startling and given the claimed proportion of the budget aimed at reaching this group, more individuals should have been reached by the campaign. And the results should have been approached more carefully and been critically evaluated. Additionally, few individuals had accessed krisinformation.se, which is the official website for information from Swedish authorities.

Given that the information campaign directs the reader to look up more information there, the results should be scrutinized more than just stating that it seems to be potential to spread further information about krisinformation.se to the group.

Additionally, in February the Swedish government declared a decree that MSB, FoHM, Socialstyrelsen, and the Medical Products Agency shall coordinate information to the public on the ongoing vaccination (Socialdepartmentet, 2021). However, recent data on vaccination rates from FoHM were presented at the Swedish news broadcast

“Aktuellt” on the 11^th of May. The data shows that the vaccination rate on immigrants and refugees is lower than the vaccination rate on native Swedes (Folkhälsomyndigheten, 2021 b). Statistics from Täby and Rinkeby/Kista, two Stockholm suburbs with great differences in socio-economic conditions, showed that the wealthier Täby’s vaccination rate was almost 20 percentage points higher (Aktuellt, 2021). The difference in vaccination rate was even larger when comparing people aged over 80 on a national level.

A representative from the Somali community expressed that people living in these areas often do not know how to book appointments and how to get information about the vaccine. He also stated that these immigrants are often grouped together and seen as one identical entity instead of seeing the variations that exist among them, and thus many are not reached by the authorities as they do not fit with the picture perceived by the authorities. One consequence of this is that they might rely on less reliable information and decline the opportunity to be vaccinated (ibid). The low vaccination rate in this group

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29 can also have serious consequences for the future as it increases the risk of continued covid-19 outbreaks.

To conclude and compare with the results from the interviews. Both the MSB survey and my interviews found that the knowledge of the recommendations and common symptoms was good. However, as my study only interviewed women, I cannot draw any conclusions whether women are more adherent to the recommendations or more worried than men. The people I interviewed did, however, appear to know about common measures to reduce the spread of the virus. Furthermore, the respondents of my study did express that it can be difficult to access and understand information, even though they did also access information from their home country. Additionally, the respondents of my interview struggled the most with a poster similar to the posters used in the MSB survey.

They also did not show any signs of recognition as opposed to the survey which concluded that the poster had a high recognition rate. Nonetheless, the statistics on vaccination rates clearly show that a large proportion of the more vulnerable population declines the vaccine, presumably due to a lack of appropriate and accessible information. The tendency that individuals in this group struggle to find information on how to get a vaccine and testing was supported in my interviews. Many of the respondents expressed that they did not know how to book appointments and had difficulties understanding basic information about the pandemic. Now is the time to change this and to put more time and effort into reach these individuals.

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30 Chapter 4. Discussion

In this chapter, I will discuss the findings in relation to the research question, the conceptual framework, and the hypotheses.

I expected based on the conceptual framework that the respondents would have limited functional, interactive, and critical health literacy. As all respondents struggled with reading and comprehending the informative posters, I argue that their functional health literacy is limited. Nevertheless, some respondents struggled more than others in reading the text, and for those respondents, I would claim that their functional health is inadequate. However, I did not find that the Somali participants had more inadequate health literacy than the Syrian group of respondents as was suggested in the study by Wångdahl et al (2014: 7). The Somali respondents did struggle with finding the information in their language when there were multiple languages on one poster, but I did not note a major difference on the other inquiries compared to the other respondents. I also did not find that the individuals with slightly more education had better health literacy than those with no education, which was another aspect that was expected from the study by Wångdahl et al (2014). Furthermore, the results from the interviews are not enough to draw any conclusions on the respondents’ interactive and critical health literacy. I can, however, state that the respondents had good knowledge of basic measures to avoid spreading covid-19, e.g., washing hands and keeping distance, which could indicate that they have some degree of interactive health literacy. The fact that many respondents expressed that they access information from several sources and show some source criticism could indicate that they also have some low degree of critical health literacy. I had also assumed that I would see that the individuals who had lived longer in Sweden would comprehend the information better than someone that has lived in Sweden for a shorter amount of time, as contextual knowledge increase over time and could improve the ability to apply the information to themselves. I did not find any indications that this assumption is supported. However, further studies would be needed to fully understand the level of health literacy.

Santos et al (2018: 12) have one explanation as to why the respondents struggled with reading the informative posters but still had good knowledge of the pandemic. They explain that individuals with limited or interrupted school background learn differently from individuals with reading skills in their native language. Their education could often be conducted in a variety of languages, and under difficult circumstances which means

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31 that they first need to learn how to do school, which takes time. Furthermore, their education could have been more focused on spoken skills which makes it more difficult to learn verbal skills, such as written information. Hence, why they might prefer to seek oral information rather than verbal and have better knowledge than their reading skills give them credit for. This might also explain why non-fluent Swedish speakers gain information through using multiple sources to find proper information they understand and rely on more sources that require less reading.

One expectation from the conceptual framework that was supported by the results was that information combined with pictures and animations was more comprehendible and accessible for the respondents. All but one picture was interpreted correctly, which also indicates that there was no gap of cognitive imports between the producer and perceiver. However, it was clear from the interviews that the posters that had more difficult words and required the reader to read between the lines and insinuated certain things were more difficult for the respondents to understand. Interestingly, the posters that were more complicated for the respondents were also posters that can be more frequently seen in newspapers and posted on billboards. I also did not see any signs of recognition of the poster that was used in the MSB survey and was concluded to have high recognition rates. This could indicate that the poster had only been distributed in larger cities or that it was a hasty conclusion.

I thought I would have greater benefit from the communication models and theory in the analysis than I did. Nevertheless, I could say that the combination of communication models and health literacy has helped me to better understand communication. I can now see that education level and health literacy could be an example of noise as explained by Shannon (1948), or affect the cognitive import as explained by Elleström (2018). The education level impacts how a person perceives information and can cause a gap between the producer and the perceiver of information. The information that probably was meant as easy to understand and quick reminders of the pandemic is easy for someone highly educated but was too difficult for someone with little or no education. Also, the statistical difference in vaccination rates between native Swedes and people of immigrant descent indicates that there is a gap and lack of understanding of the cognitive import between the producers of information and the perceivers. The communication does not reach large target groups, which causes them to obtain less reliable information. One suggestion is that the issue of the gap between producers and perceivers could be solved by consulting

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32 individuals from the target groups to get a better understanding of their culture, how they access information, and how to best approach these individuals with information.

Finally, to answer the research question – how does health literacy impact the capability to access and process health-related information, and how accessible is information regarding the covid-19 pandemic? As was shown in the interviews, and the survey by MSB, being a refugee with limited health literacy does not equal being oblivious to the current situation. Individuals with limited health literacy are still aware of common symptoms and measures to avoid spreading the virus. However, they might receive their information through alternative routes such as neighbors, social media, and school. They might also receive their information from more traditional sources such as tv news and radio, both from their home country and their new home. They might also rely more on oral information rather than written as it might be easier for them to understand through listening. Nevertheless, the information on the pandemic distributed by Swedish authorities is very advanced and not completely accessible by refugees with little or no education. Yet, text that is believed to be easy to understand is not always that easy. The posters used phrases and words that require a large vocabulary, further knowledge of the language, and an ability to read between the lines. What really made the information accessible were pictures that illustrated the text and reduced the necessity of reading skills.

Lost in Translation?

Lost in Translation?

How health literacy impacts refugees in Sweden

Table of Contents