Improving health literacy of newly arrived refugees: A qualitative assessment of the health-communication method Förstå Mig Rätt within the Swedish civic orientation

Improving health literacy of newly arrived refugees:

A qualitative assessment of the health-communication method Förstå Mig Rätt within the Swedish civic orientation

Helge Drebold

____________________________________________

Master Degree Project in Global Heath, 30 credits. Spring 2020 International Maternal and Child Health (IMCH)

Department of Women’s and Children’s Health

Supervisors: Sibylle Herzig van Wees, Josefin Wångdahl

Word Count: 13,967

ABSTRACT

Background: The growing number of migrants, and refugees in particular, can have complex impacts on healthcare systems as they face pressures of responding to new healthcare needs.

Refugees report lower levels of self-assessed health and psychological well-being compared to host populations, but paradoxically, many refrains from seeking care although they perceive the need to. Health promotion and improved health literacy has been identified to improve service utilization and health outcomes of refugees.

Aim: Investigating perceptions of health communicators in implementing a Swedish version of the teach-back method for improved health information recall – Förstå Mig Rätt (FMR) – in the Swedish civic orientation for newly arrived refugees.

Method: Semi-structured in-depth interviews were used to explore the utilization of FMR.

Content analysis was used to analyze the data, and an integrated model for health literacy by Sørensen et al. guided the discussion in examining how FMR contributed to improved health literacy.

Findings: Three themes emerged from the data: (i) Appreciating the impact of FMR; (ii) valuing the role of a communicator and; (iii) practical challenges of implementing FMR.

The findings demonstrated an overall appreciation for the method but implicated changes in the layout for further improvements.

Conclusion: FMR serves its purpose of ensuring recall and understanding of health information among newly arrived refugees attending the Swedish civic orientation. For optimal utilization, groups should be adjusted for participant educational level while further clarification on restating information, and extended time for dialogue, is recommended.

Keywords: Health literacy, health communication, health promotion, teach-back, integration,

civic orientation, refugees

List of abbreviations

AHRQ Agency for Healthcare Research and Quality

CHL Comprehensive health literacy

CO Civic orientation

COREQ Consolidated criteria for reporting qualitative research

FHL Functional health literacy

FMR Förstå Mig Rätt

HL Health literacy

IHI Institute for Healthcare Improvements

NCD Non-communicable disease

RCT Randomized control trail

SDH Social determinants of health

SFI Swedish for immigrants

UNHCR United Nations High Commissioner for Refugees

WHO World Health Organization

Acknowledgements

I would like to thank the respondents for participating in this study. Your experiences are of utmost importance for improving the civic orientation.

Thank you peers and supervisor Sibylle Herzig van Wees at Uppsala University for the constructive feedback and guidance during the thesis writing.

A special thanks to Josefin Wångdahl at the department of public health and caring sciences for introducing me to the topic and connecting me with the respondents. Your dissertation has

been an absolute inspiration throughout the process.

Finally, thank you Sebastian Aral and ‘The Dungeon’ for providing me with a safe haven to

write.

Table of content

1. Introduction ... 1

1.1 Migration and health in Sweden ... 1

1.2 Refugees and health in Sweden ... 2

1.3 Health promoting efforts for refugees in Sweden ... 3

1.4 The civic orientation ... 4

2. Theoretical framework ... 5

2.1 Consequences of limited health literacy ... 7

3. Rationale ... 8

4. A health promoting intervention for newly arrived refugees ... 9

4.1 Health Communicators ... 9

4.2 The ’teach-back’ method ...10

4.3 ‘Förstå Mig Rätt’ ...11

5. Purpose ...12

5.1 Research question ...12

6. Methodology ...13

6.1 Study design ...13

6.2 Sampling and recruitment ...13

6.3 Study setting and data collection ...14

6.4 Method of analysis ...14

6.5 Ethical Considerations ...16

6.5.1 Information letter ...16

6.5.2 Reflexivity ...17

7. Findings ...18

7.1 Appreciating the impact of FMR ...19

7.1.1 Confirmation of health information recall ...19

7.1.2 Universally applicable method ...22

7.2 Valuing the role of a communicator ...23

7.2.1 Feelings of being a bridgebuilder ...23

7.2.2 Communicator’s responsibility of participant learning ...24

7.3 Practical challenges of implementing FMR ...25

7.3.1 Struggling to harmonize approaches to FMR ...25

7.3.2 Uncertainty in prioritizing information ...28

7.3.3 Lack of time ...29

8. Discussion ...33

8.1 FMR’s contributions to improved health literacy of refugees ...33

8.2 The role of the communicator ...34

8.3 Considering health literacy to achieve health equity ...35

8.4 Adjustments for optimal use of FMR ...35

8.4.1 Extended health information in the CO ...36

8.4.2 Asking or insulting? ...37

8.5 Methodological considerations ...38

8.5.1 Trustworthiness ...39

8.5.2 Limitations ...39

9. Conclusion ...40

10. References ...41

11. Appendices ...49

Appendix 1 – Interview guide (Swedish) ...49

Appendix 2 – Interview guide (English) ...51

Appendix 3 – Coding tree ...53

Appendix 4 – Information letter (Swedish) ...54

Appendix 5 – COREQ Checklist ...55

1. Introduction

As for all people, refugees have the fundamental right to enjoy the highest attainable standard of health (1). However, health is not only influenced by biological factors, individual

behaviors, or access to health services, but by a wide range of intersecting social, political and economic factors known as the social determinants of health (SDH) (2). Housing, education and socio-economic status are examples of social determinants which affects health, but more importantly for this thesis, the process of migration is increasingly recognized as a SDH. This research project investigated how an intervention for health-communication can mitigate vulnerabilities which make refugees susceptible to poor health outcomes (3,4). The definition of a refugee is hereby shared with the United Nations High Commissioner for Refugees (UNHCR) which defined a refugee as “a person who have fled from and cannot return to their country for a well-founded fear of persecution, including wars or civil conflict” (5). In

contrast, UNHCR defined migrants as individuals “who choose to move not because of a direct threat of persecution or death, but mainly to improve their lives by finding work, or education, family reunion, or other reasons”. Unlike migrants who can return home safely, refugees face no such option (5). This study explored the perceptions of health

communicators working with newly arrived refugees attending a Swedish integration program – the civic orientation – to explore if a communication-method for improved information recall was suited as routine practice, and how it contributed to overall health literacy.

1.1 Migration and health in Sweden

Sweden was the third largest recipient country of individual asylum applications in 2015 (6).

In fact, one-fifth of the Swedish population were born abroad in 2017 (7). The growing number of migrants, and refugees in particular, can have a complex impact on host countries’

health care systems as they face pressures of responding fast to new health care needs.

However, migrants are not a homogenous group and determining the health status of these populations is difficult (8,9). Depending on the migrant’s country of origin, the view on what constitutes health and what causes ill-health contrasts. The healthcare system in the host country may also differ in terms of how it is being organized and how much it costs (10).

Several studies show that non-western migrants underutilize or inappropriately use the

healthcare system compared to others due to language barriers, insufficient healthcare

knowledge, cultural background, views on health and previous healthcare experiences (11-

14). These abovementioned factors can influence migrants will to seek care and hence also their overall health (10).

Despite several advantages of migrating, studies have shown that certain migrant groups have worse health compared to the Swedish host population (15,16). The so-called ‘healthy

migrant effect’

does not necessarily extend to all groups of migrants as refugees, asylum seekers, irregular migrants and unskilled labor migrants are generally at a higher risk for poor health outcomes (7,17,18,). Infectious diseases, musculoskeletal disorders and impaired mental well-being are more common amongst these groups compared to the host populations of high-income countries including Sweden (6,19,20). Previous research also indicated higher perinatal- and maternal mortality among certain migrant groups, as well as higher frequency of domestic violence resulting in fatal outcomes compared to the general population in

Sweden (21-23). Post-migration stress factors, which further could catalyze ill-health included discrimination, loss of family and friends, financial difficulties, acculturation stress and

threats (24).

1.2 Refugees and health in Sweden

This study, nonetheless, solely focuses on the health of newly arrived refugees in Sweden. For the sake of reading, the term ‘refugee’ is from now on used when talking about newly arrived refugees. Studies concerning the health of refugees reported lower levels of self-assessed health and psychological well-being compared to host populations in Sweden, which can predict the risk of calling in sick, morbidity and even premature death (25-28).

As refugees are a heterogenous group, health problems might vary greatly (29). However, much common ill-health among refugees are related to the SDH, such as non-communicable diseases (NCDs) or health issues related to the migration process (7,30,31). The prevalence of infectious diseases is also higher in certain sub-groups (32). In addition, refugee’s health often deteriorates over time and is often first identified when they start working (32-34).

Paradoxically, as health promoting efforts are needed to a greater extent among these groups, many refugees refrain from seeking care or participating in health promoting activities

(21,25,35,36). E.g., a survey from 2016 concerning the health of newly arrived refugees in the county of Scania showed that 73 percent abstained from seeking care although they perceived

1Observations showing that migrants have better health status at immigration than the population in their country of origin, and to some extent also better than the population in the host country, especially during the first 5-10

a need to (25). However, these conditions are dynamic and with the right efforts, the state of refugee’s health can be improved (37).

1.3 Health promoting efforts for refugees in Sweden

Existing literature has identified health promotion as an effective approach for increasing health service utilization by refugees (38). Several Swedish national policies are in place to promote a rights-based approach to health (37,39-42). The goal of the Swedish National Public Health Policy is to “create social conditions that will ensure good health, on equal terms, for the entire population” (42). This goal is also adopted in the Swedish Health and Medical Service Act, as it promotes “care on equal terms for the entire population”, and in the Swedish Patient Act, which stresses access to health information in order to assure well-being (39,40). Approach, treatment and care should hence be equal and offered to everyone

regardless of gender, age, education or ethnicity (1,39,40,42). As these policies grant refugees access to the same rights to health and healthcare as the general population, the first two years post-arrival are permeated by yet another policy – the Swedish Establishment Act (41).

The Establishment Act aspires to assist newly arrived refugees in finding jobs, housing, education and childcare, with the overall goal of making them self-sufficient (25,36,41).

People between 20-64 years of age, and people between 18-19 without parents in Sweden who have received a residence permit due to asylum reasons or because of family

immigration, are today covered by the act (36,41). As soon as a residence permit is granted by the migration authorities, the refugee is offered a meeting at the labor office where an

individual plan for establishment in Sweden is developed. According to the act, the process of establishing a newly arrived refugee into the Swedish society should not take longer than two years (41). The term ‘newly arrived’ was defined by the migration authorities as a person

“who has been received by a municipality and has been granted a residence permit due to fugitive- or protection reasons, including quota-refugees, mass-refugees or general court witnesses” (43). Relatives to these individuals are also considered newly arrived (43).

Although there are divided opinions about how long an individual is considered newly

arrived, this study defines ‘newly arrived’ as two years post-residence permit (25). Many

refugees have difficulties participating in the activities provided by the act, because many are

worried about what is going on in the country of origin, have health issues or unsatisfied

health needs (36,37). To combat ill-health among newly arrived refugees and accelerate the

establishment into the Swedish society, a number of specific health-promoting interventions

have been put in place. Two nationwide efforts are the health examination for asylum-seekers and the civic orientation (samhällsorientering) (10). This thesis is centered around the later – the civic orientation.

1.4 The civic orientation

The civic orientation (henceforth CO) are, together with Swedish language courses (SFI) and labor market introduction, mandatory activities for the refugees to partake and corresponds to 40 hours a week (44). The CO is offered as a low-intensity version (five weeks) and a high- intensive version (~one week) (37). The purpose is to facilitate for refugees to establish themselves in the Swedish society, and according to Swedish law, all newly arrived refugees with a residence permit newer than two years should be offered at least 60 hours of CO (6,25,45). The CO consists of information about the Swedish society, preferably taught in the refugee’s native language. In 2016, as many as 91 percent of the municipalities in Sweden offered CO in the mother tongue of the refugee (36,46).

Out of eight sections in the CO, health is included under the heading ‘Taking care of your health in Sweden’. Other sections are: ‘Arriving in Sweden’, ‘Living in Sweden’, ‘Support yourself and develop in Sweden’, ‘The individual rights and responsibilities’, ‘Starting a family and live with children in Sweden’, ‘Influencing in Sweden’ and ‘Aging in Sweden’

(47). The health package includes at least four hours of information about the migration process, self-care (diet, physical activity), common conditions like flu and fever, mental health, and how to navigate the Swedish healthcare system. However, many municipalities have extended the time for health information, and supplementary health-related topics can be included depending on the municipality and the group composition (37,48). E.g. Stockholm has a minimum of 12 hours while Scania has 20 hours of health information despite the 60 hours of CO (10,45,48). A recent E-mail conversation with the county government mentioned that the ambition is 100 hours of CO throughout Sweden, where the greatest extension is allocated for additional health information (E-mail K Steinvall 2020-04-30).

Previous research concerning the CO program suggests that the participants have very

different experiences about their introduction program depending on the person’s age, gender,

type of education, length of stay or other factors (28,49). General conclusions were that

participants are grateful for the opportunity of starting a new life in Sweden, however, they

appeared somewhat critical towards the tendency of authorities making decisions and policies without taking into considerations the perspectives and needs of the refugees themselves (28,49). Although the health information in the CO was believed to help refugees make rational and informed health choices and decisions, an evaluation study from 2016 revealed communication problems due to language barriers, different views on health and difficulties comprehending the given health information (10,28,37). Nearly 39 percent of 513 CO- participants perceived it as hard or very hard to know where to go if one needed healthcare, and 59 percent perceived it as hard or very hard to know where to turn if one suffered from mental illnesses (37). The challenges of communicating health to refugees for best possible health outcomes were hence explored in this study.

2. Theoretical framework

In order to make informed decisions about health, one requires access to – and the ability to –

understand, assess, and use information regarding one’s health (50,51). This ability is referred

to as health literacy (henceforth HL). Although there is little consensus on which combination

of individual skills and capabilities constituting HL, based on a systematic review of existing

definitions and conceptual frameworks, Sørensen et al. developed an integrated model of HL

presented in figure 1 below (51).

The model derives from a holistic view of health and incorporates factors that influence HL and pathways that link HL to health outcomes (51,52). It shows that HL consists of a wide range of capabilities that are influenced by various health determinants. The very center of the model represents the core of HL: “the knowledge, competencies and motivations to access, understand, appraise and apply health information in order to make judgements and take decisions in everyday life concerning healthcare, disease prevention and health promotion to maintain or improve quality of life” (51,53). The circulating arrow illustrates the process of applying HL skills to acquire, understand, process and apply health information. Each step in the process requires its own type of competences listed below.

Accessing: Requires the ability to seek, find and obtain health information, and depends on, e.g., timing and trustworthiness of information.

Understanding: Requires the ability to comprehend accessed health information and depends partly on its perceived utility and how well it is adapted to the individual.

Appraising: Requires the ability to interpret, filter and critically evaluate health information and depends on, e.g., its complexity and jargon.

Applying: Requires the ability to communicate and use information to maintain and improve health and depends on comprehension.

These competences enable people to navigate in three illustrated health domains: health promotion, disease prevention and healthcare. The ‘individual – population level’ continuum at the bottom explains the relationship between the individual and the population. It stresses that the relationship is integrated, because individuals as well as communities, organizations and societies can be considered health literate. The ‘life course’ scale at the top clarifies that the abovementioned competences develop over time and are affected by changes in

knowledge and experiences, by cognitive and psychosocial factors and changing contexts

(29). The boxes to the left are factors expected to have an impact on HL. They correspond to

the SDH presented in the rainbow model

by Dahlgren and Whitehead (54). The boxes to the right are outcomes of which improved HL skills have the potential to impact (29).

Since the model was published in 2012, additional definitions have emerged breaking down HL even further. Functional health literacy (FHL) is much related to literacy as it concerns an individual’s ability to read information and instructions related to health. Comprehensive health literacy (CHL), on the other hand, refers to an individual’s ability to find, understand, assess and use information regarding health (51,55). This study used the latter definition of CHL when talking about HL. The most common ways of measuring individuals HL levels are population-based proxy measures, direct testing of individual HL skills, and self-reporting of HL. The first is not frequently used because it centers around individuals FHL or even plain literacy. Direct testing is rather objective but is time consuming since it requires face-to-face interviews. The self-reporting measurements has increased rapidly as they are easier to

include in surveys. Nevertheless, they are also more subjective (29). As HL is not a fixed skill but rather something that develops in relation to the environment, a refugee might have sufficient HL skills to successfully navigate the healthcare system in the country of origin but might be challenged by the demands and complexity of the healthcare system in the new host country (29,55).

2.1 Consequences of limited health literacy

People with limited HL struggle to understand instructions from healthcare personnel and interpreting health information. They suffer poorer adherence to medicine and treatment regimens, and refrain examinations due to fear or stigma of somebody finding out about their challenges of comprehending information (56-62). These people often hide their

shortcomings as they are often linked to shame (62). Inadequate or limited HL can hence lead to unnecessary ill-health. Studies comparing different levels of HL have shown that

individuals with lower HL are more frequently hospitalized, more often use emergency and other medical care services, have higher health care expenditures and worse overall health (62,63).

2A framework showing the relationship between the individual, environment and health. Individuals are placed at the center of the model surrounded by various layers that influence health – such as, individual lifestyle factors, community influences, and structural factors like living conditions or access to health services (54).

Poor knowledge of how to use healthcare services, complications adapting to new healthcare systems and language barriers are well-known obstacles for accessing healthcare among all migrants, including refugees (6,37,65,67). However, these obstacles are also related to the HL competences displayed by Sørensen’s et al. model (51). Studies show that refugees, low educated, chronically ill, elders and people with low self-assessed health often have worse HL than others (29,36,51,58,66). According to a cross-sectional study from 2014 by Wångdahl et al., 80 percent of 450 newly arrived refugees in Sweden had limited functional HL and 62 per cent had limited comprehensive HL (65). Although comparisons of HL levels between

countries’ populations are difficult due to differences in definitions and how HL is measured, a population study from Germany also identified refugees as a high-risk group for limited HL.

71 per cent of the sample reported significant difficulties in processing health information and translating it into health promoting behaviors (60). The results were in line with studies from other high-income countries which report ‘ethnic minority status’ as a risk factor for limited HL (61).

Inadequate or limited degree of HL can explain why many refugees are skeptical to the healthcare system, seek care too late or utilize the healthcare system in a non-optimal way (37,50,51). A qualitative study disclosed that limited HL among refugees could further contribute to worsened health inequalities in the society as a whole (66). Possible reasons were that limited HL hindered refugees from comprehending health information linguistically as well as culturally, which could lead to misunderstandings of medical information and future negative health outcomes (66). As the level of HL affects people’s health behaviors, HL can also be a useful indicator when assessing health-promoting interventions (26,29).

Regarding the CO, associations has been observed between low course participation and limited HL (37). These findings support this study’s hypothesis that low HL is common among refugees and can be a contributing factor to their future health in Sweden.

3. Rationale

The CO is not equally useful for everyone that participates (29,37,67,68). More than often, those with limited HL gained less knowledge compared to those with higher levels of HL.

People with higher HL were also more prone to actively do something in order to improve

their health based on the information received during the CO (51,67). In addition,

translated versions are not always validated (29). Consequently, refugees are often excluded from surveys concerning HL and knowledge on refugee’s HL skills are therefore scarce.

Wångdahl interpreted these findings as potential factors for increased health inequalities in Sweden (29,68). “Not considering that individuals have different HL levels and not meeting the needs of those with lowest HL could challenge their right to health, as well as other human rights” (29). Strengthening refugees’ health promoting capabilities, including HL, could help preventing a vicious cycle of them not being able to participate fully in the Swedish society (10,37).

Outside of Sweden, knowledge regarding the relationship between HL, health behaviors and health outcomes is limited (29). According to the World Health Organization (WHO), health- related issues linked to migration now constitutes greater challenges for public health than ever before (69). WHO’s technical guidance for health promotion of migrants recognized the lack of evaluations in terms of what intervention strategies were being effective for promoting health to refugees (69). Understanding the effectiveness of available interventions is of

interest for decision-makers who face the challenges of rolling out and scaling up interventions for improving HL across populations (29).

4. A health promoting intervention for newly arrived refugees

This study draws on the abovementioned rationale that improving HL skills would improve refugees care-seeking abilities and hence also their health. The following sections describe an intervention for refugee health promotion of which this study aims to assess.

4.1 Health Communicators

Studies have shown that multiple group dialogues, in the mother tongue of the refugee, is

successful to promote health and increase HL (27,48,70,71). Having communicators with

similar backgrounds as the refugees moderating these dialogues have shown to be of

particular success (48,70,71). By using their linguistic and cultural competences, the health

communicators have the ability to build bridges between healthcare systems (27). Sometimes

referred to as ‘cultural mediators’, ‘bilingual moderators’ or ‘international health advisors’,

the communicators possess the combination of knowledge about the country of origin and

expertise about the host country, its health system and common health barriers that refugees

might encounter (37,72). The communicators are recruited by the county government, and are qualified through language skills, communication skills, and sometimes professional

background in health- or social care. They receive preparatory training to provide the refugees with health information in their mother tongue, which imply that refugees at an early stage, can receive information about what rights to healthcare they have, where to go if sick, and what they can do in order to promote their own health (28,29,37).

4.2 The ’teach-back’ method

The Swedish research community, along with the Agency for Healthcare Research and Quality (AHRQ) and the Institute for Healthcare Improvements (IHI), has recommended healthcare practitioners to use the ‘teach-back’ method when interacting with people with low HL, such as newly arrived refugees (29,73-76). Teach-back, also known as ‘show me’ or

‘closing the loop’ is a health-communication method which aims to check for lapses in patients’ understanding of health information by asking them to repeat back key points of the given information with his/her own words, as described in figure 2 (75,76).

The method covers four steps: (i) the care provider explain the necessary health information to the patient and then gently uses open-ended questions to ask the patient to repeat the information back; (ii) the patient retells the information back to the best of his/her ability; (iii) if comprehension is not demonstrated or if the patient seems to have a gap in understanding, the care provider can easily identify what information should be repeated or clarified; (iiii) the cycle continues until the patient answers correctly and understanding is demonstrated (75,76).

Examples of open teach-back questions are: “I want to make sure that I explained everything well. Can you please tell me what we have discussed here today?”, or “What can you tell your wife/husband about the changes in your medication when you get home?” (77).

Explain Retell Clarify Understand

Figure 2. The teach-back concept

The literature suggests using plain language when using teach-back and not focusing on more than three pieces of information at a time (73-75). The method is not a test of the patient’s knowledge as much as it is a tool for securing how well the care provider has explained the information, and since teach-back does not require any particular level of literacy, it allows for those with low literacy levels to actively partake (76,77). A study from 2003 revealed that 40-80 percent of the medical information a patient receives during a visit to the care provider is immediately forgotten as soon as the patient leaves the clinic, and about half of that

information is remembered incorrectly (78). Consequently, teach-back has systematically been used to reduce misunderstandings of health information and the method is now regarded one of ten best evidence-based interventions for improving patient safety (73).

Studies on the effectiveness of teach-back have taken place in clinical settings and have mostly dealt with chronic diseases (77). Most of the studies are pilot interventions rather than a reflection of routine practices. Nevertheless, one routine practice randomized control trial (RCT) measuring diabetes knowledge revealed significant increase in knowledge scores following the teach-back intervention. Although being able to control for blood glucose levels was not significant (p = 0.345), self-care behaviors regarding diet and exercise improved significantly when teach-back was used, especially amongst those with low baseline HL (p<0.001) (79). Another RCT with 127 adults with type II diabetes and low HL were randomized to receive routine care (control group) or three weekly 20 minutes educational sessions provided via teach-back (80). There were statistically significant improvements (p<0.001) in both adherence, dietary and medication regimens for the intervention group (80).

Positive but inconsistent improvements (p=0.06) were also seen in a study which used teach- back to reduce all-cause hospital readmission rates and hospitalizations (81). This implies that a reduction in readmission and hospitalizations might be a promising outcome of using teach- back, but stronger evidence is required.

4.3 ‘Förstå Mig Rätt’

A Swedish version of the teach-back method called ‘Förstå mig rätt’ (FMR) has been

developed by Kunskapscentrum för Jämlik Vård (82). In an attempt to reinforce health

education to refugees, the teach-back/FMR method has now been adapted for use at group

level and tested outside the clinical environment with refugees attending CO courses. During

an online training program, health communicators were trained on FMR and tested it with refugees during the health block of the CO. The training was conducted by ‘MILSA education platform for civic and health communication’. The project is one of many projects within MILSA (abbreviation for ‘support platform for migration and health’), a part of Partnership Skåne which combines initiatives from various disciplines. MILSA education platform for civic and health communication is funded by the European refugee fund and emphasize health communication and cultural mediation as key determinants of health for refugees. The

objective for introducing FMR was to build communication bridges between cultures that would “contribute to the success of healthcare delivery and ultimately, of effective

integration” (72). A scoping review of the literature suggests that there is scarce evidence on the use of teach-back/FMR with refugees, and therefore, this study aims to investigate its use in the CO. Henceforth, ‘FMR’ will be the term used when talking about the teach-back concept.

5. Purpose

The purpose of this thesis was to conduct a qualitative assessment of the health- communication method Förstå Mig Rätt (FMR) within the health block of the civic orientation (CO). By investigating the perceptions from Arabic-, Somali- and Tigrinya- speaking health communicators, the objective was to identify opportunities with the method, as well as bottlenecks in the utilization of it. As FMR has mainly been studied in the clinical environment, the aim was to investigate its usefulness in the setting of integration programs with newly arrived refugees in Sweden. The integrated model of HL by Sørensen et al. was further used as a theoretical framework, and as an indicator, for HL. The framework guided the discussion in exploring how FMR is contributing to the competences of health literacy explained by the model.

5.1 Research question

What are the health communicator’s perceptions of the health communication-method Förstå

Mig Rätt within the health block of the Swedish civic orientation?

6. Methodology

6.1 Study design

A qualitative approach with in-depth interviews was used to capture the communicator’s perceptions of FMR. In-depth interviews were chosen because they are particularly useful in exploring behaviors and perceptions (83).

6.2 Sampling and recruitment

The participants in this study were limited to civic- and health communicators teaching CO courses for newly arrived refugees in Sweden. The inclusion criteria for eligibility were: (i) municipally employed; (ii) underwent a skills training on FMR provided by MILSA and; (iii) have tested FMR with refugees at least once during a CO course. After completed

participation in the skills training, the communicators received an information letter about the study via co-supervisor Josefin Wångdahl (PhD and coordinator for MILSA education

platform for civic and health communication). The communicators then voluntarily declared their interest in participating by responding to the letter. The purposive sampling used was appropriate because the group of potential informants was very specific, rather small and strictly voluntarily. The idea of purposive sampling is to focus on people with a particular set of characteristics who are willing to provide information by virtue of knowledge or

experience (84).

Both men and women, without any fixed age limit, were welcomed to join as the variety of both gender and age would increase the possibilities of having FMR illuminated from different perspectives and contribute to more diverse findings (83). The initial idea was to include perceptions from 8-10 communicators. However, due to narrow interest, and

speculatively due to the ongoing Covid-19 pandemic, six interviews in total were eventually

conducted. The sample consisted of three women and three men between 37 and 47 years old

with a mean age of 42 years. The average time working as a civic/health communicator was

5,3 years. The communicators resided in different parts of Sweden and the language spoken at

the CO was Arabic, Somali and Tigrinya. None of the volunteered respondents dropped out

during the study and none had any previous relation with the author.

6.3 Study setting and data collection

Data was collected by the author between January-March 2020. Since the respondents came from different places around Sweden, telephone interviews from home were the best suitable way to collect the data. The interviews were semi-structured with the assistance of an

interview guide (see appendix 1) which had been tested once during a pilot interview. The guide included open questions concerning two domains: the refugees and the communicators.

The structured questions were same for all, while the probing questions differed depending on whatever content turned out to be significant during the specific interview (83). However, the respondents were encouraged to speak freely about their experiences in order to better portray the latent content of the conversations. The interviews were in Swedish and lasted from 45 minutes up to an hour. The audio-recorded interviews were transcribed the same day and eventually uploaded to NVivo (version 12), which was the software used for the analysis.

6.4 Method of analysis

Granheim and Lundman’s qualitative content analysis was the framework used to analyze the interview data (85). The author deemed it suitable for the analysis, because it systematically organizes the data into a structured format while it ‘cleans’ the data into content-related categories (86). Content analysis also consider both the manifested and the latent content from the interviews. The manifest content – what the text says – is presented in categories while the themes in this study are seen as expressions of the latent content – what the text is talking about (85). After verbatim transcription, the units of analysis (full interviews) were

thoroughly read several times to get a sense for the whole simultaneously as notes for coding ideas were taking in the margin. In the first phase, meaning units were produced that were neither too big, nor too small. Too large meaning units were tough to handle since there was a risk of losing some of the specific content, whereas too small meaning units were avoided in order to prevent fragmentation (83).

In the second phase, the meaning units were condensed and systematically abstracted.

Questions such as; what does this imply? were asked to the text. The emerged phenomenon was given a label – a code (83). Initially there were 200+ codes representing the six

interviews. After five rounds of coding, approximately 50 codes that answered the research

purpose were kept and sorted into sub-categories and categories. The selected codes were

based on content that was either repeated throughout the interviews, surprised the author, or

related to the reviewed literature. The ambition was to have one type of content in one

exclusive category. The German professor in communication, Klaus Krippendorf, once stated that “the categories should be exhaustive and mutually exclusive” (83). In short, no data should fall between two categories, and no data that answers the purpose, should be excluded.

Numerous initial categories were tried, re-arranged and some rejected in discussion with peers and supervisors. Table 1 shows a simplified example of the analytical process using content analysis.

Table 1. Example of analytical process

Meaning unit Condensed meaning

unit Code Sub-category Category

R1: For those with low educational level, it takes more time and that affects the rest of the participants…

R1: Some understand instantly while others need to hear the information several times…

R4: I only have four hours and a lot of information to give. I need to be as clear as possible so that everybody will

understand…

R6: I always try to adjust the information, so it would fit all, but if they are illiterate, it is hard…

Differences in educational backgrounds hinder smooth

implementation of FMR

Mixed education delay FMR

Discrepancies in participant understanding

Lack of time

After categorization, the third phase involved linking categories together to formulate

common themes. These themes answered the question of; What is this all about? and was the

highest level of abstraction in this study. Quotes describing how the participants expressed

themselves were chosen to illustrate each category (83). A tabulated summery was made to

easier present the coding tree (appendix 3) with its categories and themes. Parallel to the

study’s inductive approach, the model for HL by Sørensen’s et al. guided the discussion, but

the data was never coded into the competences described by the model. Yet, as the analysis

included open coding, abstraction and categorization according to an inductive approach,

featuring the model added some elements of a deductive approach. Thus, a hybrid approach

was deemed for this study.

6.5 Ethical Considerations

This is an independent study. No ethical approval was made in discussions with supervisors, seeing that data collection took place in Sweden, concerned telephone interviews, and no publication was ought to be made. However, all interview research is permeated by ethical issues, because the knowledge produced depends on the relationship between the author and the interviewees. Conducting the interviews therefore required a balance between the authors interest in accessing useful information and the ethical respect for the respondent’s integrity.

Thus, with inspiration from Kvale and Brinkmann’s ethical guidelines for interview research, the following ethical questions were considered (77):

• What good effects will the study have?

• How can the study contribute to the situation for the communicators? For newly arrived refugees in Sweden?

• How can informed consent be obtained from the participating interviewees?

• How can the confidentiality of the interviewees be protected?

• How can the interviewees identity be protected?

• Who will get access to the interviews?

• What consequences will the study have for those participating in it?

• How will the role of the researcher affect the study outcome?

These questions were primarily mitigated by the information letter sent to the study

participants prior to the interviews. However, supervision discussions on how to display the findings to protect the respondent’s identities, and the reflexivity section further helped mitigating these issues.

6.5.1 Information letter

Before the interview, the respondents took part of an information letter (appendix 4) where the ethical considerations were presented, and anonymity offered. The letter stated the

purpose of the study, how the data would be obtained, used, and informed consent. The study participation was completely voluntarily, and cancelations could be made at any time without any particular reason or consequences. It also stated that no unauthorized person would see the interview material and no individual participant would be identified during the

presentation of the study. The letter mentioned that the findings would be presented as a

master’s thesis in global health, as well as orally and in writing for people working with migration, health and health promotion. The same information was later introduced orally in conjunction to the interview. By participating in the interview, the respondents agreed to be part of this research project.

6.5.2 Reflexivity

Preconceptions were acknowledged as a factor that could influence the interpretation of the findings. Since the author was the one who collected the data and performed the analysis, the question of the author’s qualifications arose. The author was a male master student of global health at the department of women’s and children’s health at Uppsala University. Prior to this research project, the author had achieved bachelor’s degrees in Development studies and International relations, where one interview study on food security/urbanization was

conducted in northern Vietnam (2017). Professionally the author has worked for the United Nations Association of Sweden (UNA Sweden) and its partners, both in Sweden and abroad.

Central parts of the work included communicating and advocating, which partly fueled the interest of doing research in health communication. Although the broader spectrum of health promotion was rooted during this master’s program, the area of health literacy and health communication was unfamiliar territory before writing this thesis.

Interviewing is associated with an asymmetric power relationship (83). The researcher decides the topic, asks the questions and determines what questions should be probed. The researcher also has monopoly on interpretation of the respondent’s statements and hence an exclusive right to interpret what the respondent actually meant (83). As a response to this, some respondents might withhold information or avoid the topic. To prevent this, the author made sure to conduct the interview during a time where the respondents were comfortable.

The respondents were also informed that no right or wrong answers exist, and that their

unique experiences were important for improving the CO. The aim was never to eliminate the

power from the interview, but rather to reflect on how the power relationship affected the

study outcome (83). That being said, the respondents were so generous and willing to talk

about the topic that such a relationship was tough to define. To do the respondents justice and

further improve credibility of the study, the aim was always to ‘let the text talk’ and not

impute meaning when it was not there (85).

7. Findings

After five rounds of coding, three major themes emerged from the data: (i) Appreciating the impact of FMR; (ii) valuing the role of a communicator and; (iii) practical challenges of implementing FMR. Table 2 explains the relationship between the themes and their respective categories and sub-categories. The green highlighted area symbolizes the opportunities with FMR, whereas the red area represents the challenges. A similarly colored coding tree is enclosed in appendix 3. To avoid confusion, the respondents of this study is from now on referred to as ‘respondents’ or ‘communicators’, whereas the beneficiaries of FMR – the newly arrived refugees – are plainly referred to as ‘refugees’ or ‘participants’ of the CO.

Table 2. Research findings

Sub-categories Categories Themes

FMR raising awareness of health determinants

Confirmation of health information recall Appreciating the impact of FMR FMR accessing rights to

healthcare

Universally applicable method Feelings of being a bridge builder

Valuing the role of a communicator Communicator’s responsibility of

participant learning Concerns about causing

offense

Struggling to harmonize approaches to FMR

Practical challenges of implementing FMR

Uncertainty in prioritizing information Discrepancies of participant

understanding

Lack of time Difficulties of using

interpreter with FMR

7.1 Appreciating the impact of FMR

The first theme that emerged from the analysis was built around the praise and expressed opportunities the respondents had for FMR. This was based on codes included in two categories: (i) confirmation of health information recall and; (ii) universally applicable method. The interviews demonstrated an overall appreciation for FMR as a good method for health-communication and this theme described that gratitude.

7.1.1 Confirmation of health information recall

The respondents acknowledged the ability of FMR to either provide better recall, or reduce misunderstandings of health information from the CO. They highlighted the repetitive nature of the method as a great opportunity, because it increased the participants ability to remember the information, and by that, they tended to learn more. The interviews displayed a

recognition for having an educational tool that could discover misinterpretations, while making the CO classes more interactive. Some respondents referred to FMR as a resource for people who come to Sweden, while others talked about it as a tool for structuring their teaching. The perceptions that FMR functioned as a receipt of understanding was shared throughout the interviews and could be illustrated by the following quote.

I become more structured when I use it [FMR] in the class room. My participants are more active, and I do not have to talk as much, I do not get tired. But the most important thing is that it is really easy to determine if they have understood or not – that is very simple when using this method. [respondent 2, man]

The respondents enthusiastically reported their thoughts on the simplicity of FMR. Having an educational tool like FMR at their disposal were viewed as an eye-opener for improving their own communicative shortcomings, which would make their jobs easier. The perception was that FMR not only determined if misunderstandings occur, but rather what was

misunderstood.

Before [FMR] I did not even know misunderstandings occurred. I

thought I was very clear and used plain language so that everyone

would understand me. I was surprised they could get me wrong. I used

to ask if the participants had any questions at the end, but now I know

that it was wrong because all they say is just ‘yes yes, we understand’, but now I can see what they understood. In that regard FMR helps a lot! [respondent 4, woman]

The ambition of using FMR in the CO was perceived as beneficial for the communicators. In particular, FMR’s ability to discover misunderstandings was valued high. This category was further branched into two sub-categories which included more on what type of information that was facilitated through the method.

7.1.1.1 FMR raising awareness of health determinants

The interviews revealed that the rainbow model and the social determinants of health (SDH) were especially perceived as important pieces of information for the refugees. The

respondents used the rainbow model in almost every topic, together with FMR, to show how everyday life activities affected the refugee’s health. Much emphasize was put on how the SDH could promote health outcomes. The quote below aims to describe this.

It [the rainbow model] is important because it shows how the household economy affects health. Sometimes the participants have little or no control over their economy, so they feel frustrated and stressed at the end of the month. It affects the health a great deal and is very important to talk about. [respondent 2, man]

The SDH were recurrently talked about from different angels throughout the interviews.

Another respondent mentioned them in relation to cultural differences in attitudes towards smoking and meant that FMR can be used to facilitate awareness of what causes ill-health.

The following quote illustrates this perception.

They [the refugees] struggled to understand how bad smoking is, how bad smoking hookah for one hour is, how many toxins are in that smoke. FMR made it easier to raise awareness of how bad it is […] It [FMR] helps increase knowledge about what can causes ill-health.

[respondent 1, man]

According to the respondents, the rainbow model by Dahlgren and Whitehead and the SDH were useful pieces of information to give to the refugees through FMR. Being more aware of determinants were assumed to prevent bad health outcomes, because connecting everyday life activities to the refugee’s health would be easier to relate to. The intention was to build better health-promoting behaviors for the refugees and FMR was perceived to assist them in doing so.

7.1.1.2 FMR accessing rights to healthcare

The respondents acknowledged the importance for the refugees to access their rights to healthcare. The common perception was that accessing rights to care would improve their care-seeking behaviors and hence contribute to better health outcomes. Interesting discussions emerged around how a rather simple health-education intervention, such as FMR, could have a greater impact on the public health as a whole. The respondents particularly raised the issue of equality in society when referring to how FMR could access rights to care. “The

knowledge about their [the refugees] rights improve by the explanatory manner FMR has. It can contribute to a more equal society in the long run, because everyone has the same right to good health” [respondent 2, man].

Another respondent also pointed out the rights to access health information in the native language in relation to FMR. It was argued that language barriers are the first hinder to accessing medical information, but that FMR allowed access despite these barriers. “Many cannot write or even read their own language, so this method [FMR] allows us to reach those who are illiterate as well” [respondent 4, woman]. Furthermore, having the right to an

interpreter when visiting the Swedish care-providers was perceived as a factor that could grant refugees even better access to care.

If you are sick and need a specific sort of medicine, you have to know how many pills to take, you have to be able to read the instructions on the pamphlet. Ask if you do not know. You must not be ashamed of this because this is really important. You have the right to an interpreter – use that right! [respondent 5, woman]

The interviews described FMR’s ability to promote good health through facilitating

also brought up the importance of accessing health information in the mother tongue, and the rights to an interpreter in order to access the same right to health as the native population in Sweden. As FMR was perceived to work irrespective of literacy level, the wide use of the method was further described as another opportunity.

7.1.2 Universally applicable method

The extensive application of the method was perceived as an advantage. This category concerns where the respondents applied FMR. As FMR was first tested within the health block of the CO, the respondents used it in additional topics of the CO too. The possibility of using FMR elsewhere was perceived exclusively as a strength, as described by the two following quotes: “I will have use for it [FMR] for the rest of my career […] I have used it in every topic of the CO” [respondent 3, woman]. “It [FMR] is a tool to structure information and determine understanding, so it fits multiple topics in the CO, not just health” [respondent 1, man]. Besides, the width of FMR was alleged to have a positive impact on learning outside the CO as well. The respondents eagerly talked about using FMR in other professions dealing with people’s learning. One concrete example for alternative use was at the labor office where FMR was perceived to have a great impact on the refugee’s integration.

You can use this [FMR] everywhere. For example, at the labor office when they have meetings with our participants. They have a lot of information at those meetings and after they just ask, ‘do you understand?’. The participants answer ‘yes’ but I know they do not always understand everything. [respondent 4, woman]

The interviews also revealed stories of where FMR was used outside the professional

environment. This adds to the overall perception that FMR could be used in diverse settings in order to enhance learning, not just for the sake of boosting learning in CO courses or in a clinical setting. One respondent described using FMR at home:

I have children and need something good to raise them with, to see if

they listen to me, or if there is something I want them to carry with

them for the rest of their lives. It is not just at work I have use for it

[FMR] [laugh]. [respondent 3, woman]

The manifest content of this category was permeated by expressions of gratitude for the wide scope that FMR provided. Learning improvements were perceived to be greater when using FMR compared to before the intervention. Beyond these advantages, the communicators recommended their peers to use FMR frequently in order to improve their own

communicative abilities. The perceptions of being a civic-/health communicator is further described in the next theme.

7.2 Valuing the role of a communicator

Feelings of pride and significance arose from the data in terms of how the respondents perceived themselves. In order to get a holistic picture of whom the communicators were in relation to the refugees, and in relation to FMR, this theme is twofold and contains two distinct categories: (i) feelings of being a bridgebuilder and; (ii) responsibility of participant learning. The first category was based on the self-reported importance of guidance and willingness to help the refugees. The second category, however, speaks about the

responsibility of learning and how FMR empowered the respondents in their teaching. Since the ‘teach-back’ concept used in FMR was more of a test of the communicators ability to teach information rather than a test of the refugee’s ability to understand it, much

responsibility was put on the communicator. Thus, the second category contains perceptions of living up to those expectations.

7.2.1 Feelings of being a bridgebuilder

Being able to assist the refugees in their everyday life, whereas during the CO or outside the CO, was perceived as very important by the respondents. This was revealed by a collective sense of pride in their professional role as communicators. Expressions of honor occurred repeatedly, and some viewed their role as a key into the Swedish society. The latent content from the discussions revealed acts of solidarity for the refugee’s transition into society, and feelings of responsibility to guide them there. Paving the way for the refugee’s transition were considered as a matter of course and a ‘must-do’ to support their fellow countrymen and women. The quote below aims to describe this responsibility.

I think my role as a health communicator is more than a

communicator or a teacher. I have to guide them. I feel like I am the

key between the culture we belong to in the middle east and the new

society we find ourselves in now. Therefore, my role is more than a communicator, I feel more like a guide. [respondent 1, man]

The interviews also demonstrated perceptions of how the communicators could mitigate migration complications in a wider, global context. By distributing useful health information that made everyday life easier for the refugees, the integration process was viewed to run smoother when involving health communicators.

My role is very important now. There are big challenges with migration and immigration all over the world right now, and it is really important to share this information to make the everyday life of the participants as easy as possible. [respondent 6, man]

The abovementioned perceptions revealed acts of social cohesion between the communicators and the refugees. Having communicators with the same background as the refugees was identified as a strength, not only by previous research, but by the respondents of this study as well. The perceived willingness to guide the refugees indicated a responsibility for their participants and for a smooth integration process in general. Another form of responsibility in the context of FMR was the responsibility of learning. This is further explained in the next category.

7.2.2 Communicator’s responsibility of participant learning

Although FMR was a tool to determine information recall, it was not a test to determine which participant understood the topic better. Contrariwise, it was rather a tool for the

communicators to determine if they explained the information in a clear, understandable way.

More on this delicate dilemma in the next theme. However, the interviews disclosed an awareness of responsibility for the participants learning. Although the respondents declared the refugee’s interest and willingness to learn to be central factors for what they

comprehended from the CO, the communicative abilities of the communicator were equally stressed as contributing factors. E.g., some respondents argued that their communicative skills allowed the participants to learn more.

It is not just about the recipient’s ability to understand. It is our

communicative skills that allow the participants to get more

knowledge […] Before I came to Sweden, I was a teacher and I have the basic skills to teach. It is my responsibility to master my role and the educational tools I possess to make sure the participants receive the right civic information. [respondent 1, man]

The interviews demonstrated that the reasons for asking the refugees to repeat back

information was never to test their knowledge, but to assess how well the communicators had taught it. As this goes according to the principles of FMR, a thin line emerged between self- evaluating the communicators’ own teaching capabilities and comparing which participant understood better. Following are two quotes that described how the respondents shouldered this responsibility: “Sometimes I ask them to recall what we did yesterday. It is not a test to compare who knows more, but for me to know if I did a decent job explaining or not”

[respondent 5, woman]. “What the participants understand must be because of me […] I understand that I sometimes talk too fast or unclear. It is not them who do not understand, it is me who could not explain well enough” [respondent 2, man].

Although the communicators viewed the interest of the participants as vital for their learning, the perceptions also implied that the communicators put a lot of responsibility on themselves to facilitate the refugee’s learning. As this theme appreciated how FMR empowered the communicators, the following theme deals with the hurdles of implementing FMR in the CO.

7.3 Practical challenges of implementing FMR

The third theme of this study combines the respondent’s expressed limitations concerning the implementation of the method. Although the overall perception was that FMR was beneficial both for the communicators and the participants, several difficulties of using FMR were vented, which implied room for further improvements. This theme contains the categories of:

(i) Struggling to harmonize approaches to FMR; (ii) Uncertainty in prioritizing health information and; (iii) Lack of time.

7.3.1 Struggling to harmonize approaches to FMR

The analysis suggested the course of action used by the communicators when applying FMR

in the CO. As the respondents reported different approaches to FMR, the author identified the

wide spectra of diverse use as a challenge for the refugees learning even though the

communicators might have not. Some respondents used FMR at the end of each class as a tool to evaluate how well the participants comprehended the information, whereas others used FMR repeatedly throughout the class including if there was suspicion of forgotten

information. Structured quiz-questions, oral examination or open conversations where used to recall the information. This theme highlights the contrast of how FMR was utilized in the CO and the following two quotes describe that disparity.

At the end of each subject I want confirmation to ensure that the information has been understood. I have a list of questions that contain the same information that we went through, so then I summarize a little bit and I ask the questions orally, so it fits the illiterates as well. [respondent 3, woman]

In contrast, another respondent described the use of FMR this way:

I explain the information in smaller pieces and then I ask after a couple of minutes if they understood exactly what I told them […] I ask fixed questions. Sometimes I wait until after the break to see if they forgot any important information. I also remind them if I suspect that they forgot anything. [respondent 5, woman]

As the variations in use ranged from an inclusive during-class approach to a more concluding approach at the end of the class, experiences of FMR must have fluctuated greatly among the participating refugees. The following sub-category further demonstrated one particular feature of FMR where respondents experienced frictions between them and the refugees.

7.3.1.1 Concerns about causing offence

Some respondents were critical to the layout of FMR. More specifically they were critical to when the process of retelling information should occur. The interviews demonstrated that the refugees sometimes felt offended or insulted when asked to repeat key points of the given information. The perceived reason for this was because the refugees thought the

communicators asked them to retell information because they were either slow, forgetful or

sick. The respondents also revealed that much of the training material received from MILSA

communicators struggled to see the relevance of having examples from the clinical setting when FMR was performed with healthy participants in the CO. Comparing the needs of patients with the needs of the refugees were not perceived to be the same nor relevant. These discussions were grounded in when the process of retelling information should take place.

According to the respondents, asking the participants to retell the information with smaller intervals, or even the same day, was not considered a good option.

MILSA insisted that we should do it [FMR] the same day, but for many people it feels a little, I do not know, not so right because it looks like we think they have a problem with understanding or that they are forgetful […] You have to distinguish between a sick person and a regular person. When we watched the introduction videos for FMR, they were mostly helping sick people with it. We must distinguish between the groups, we cannot treat out participants the same way. Participant does not mean patient, they are not sick people who have trouble remembering. [respondent 5, woman]

This experienced hardship created a sense of reluctance for using FMR as a routine tool for communicating health information. Some communicators were even questioned by the participants for using the method. The participants felt that FMR was unnecessary since the information was already communicated in their mother tongue, and hence, the communicators uttered the need to change the layout of FMR and postpone the process of repeating

information.

One participant asked why we do this [FMR] when they are not sick or slow. ‘We understand what you say, we understand the language, it is our mother tongue’, he said. Sometimes the participants have problems with their kids, studies etc., but they do not have Alzheimer or dementia. We must change the method so that they are not asked to retell right away. [respondent 4, woman]

As this theme revealed how FMR was approached differently by different communicators,

considering these concerns opens up for discussions of when the process of asking