The refugees’ experience that information received in the form of concrete instructions and explanations is important, valuable and useful indicates a concordance between the refugees’ information needs and the adequacy of the information given. As the individuals in the focus groups were heterogenic in terms of country of origin, age, sex and education, the results indicate that the information given to them by health care professionals meet individuals’ personal needs. This is in line with the idea of a health literate health care organization (HLHO) (35), whose intention is to compensate for individuals’ limited health literacy to increase the abilities of vulnerable persons to navigate in the health care system, to facilitate access to community-based health literacy resources, and to be responsive to individual needs and improve health outcomes (35-37).
However, another part of the results, showing that health professionals were experienced as often neglecting potential problems stemming from language difficulties, is contradictory to that conclusion. According to Swedish law, health care professionals have a duty to inform patients and to involve them as a part of their health care and to secure that the information that is given is understood (38). The use of cultural mediators is a possible way to improve the communication between health care and refugees (39-41). Cultural mediators are usually people from the same culture and/or country as the refugees, but with experiences and knowledge about the new country including culture, norms and structures. Thus, they can give information and discuss issues from the refugees’ perspective, and answer questions in the refugees’ native language. Further, they can sustain a dialogue about the information, comparing situations and procedures in the old and the new country(42).
The need experienced by the refugees to be informed with valid and consequent information, including explanations about differences between treatment and examination options, makes clear a desire on the part of the refugees to make their own well-founded decisions concerning health issues and to actively participate in their contacts with health care. This desire indicates a self-image of a capable person with his or her own responsibility to take care of up-coming health issues. Realizing this self-image in a new country places demands on the health organization to spread valid and appropriate information and to provide empowering interventions (43). Bravo et al. (43) have described that health literacy, personal capacity, self-efficacy, sense of meaning and coherence about health problems, perceived control and feelings of being respected by their health care providers are indicators of patient empowerment (43). According to The United Nations 2030 Agenda for Sustainable Development (44), vulnerable persons must be empowered, and some of the goals of the agenda clearly relate to health literacy by emphasizing lifelong learning opportunities, healthy lives and the promotion of well-being (44). Inadequate individual and organizational health literacy acts as a barrier to personal engagement and empowerment (45). Thus, the importance of concrete instructions and explanations is clear.
The experienced need of more contextual information about the health care system, health care regulations, health issues, health behavior et cetera in the new country confirms the conception of health literacy as a context-dependent phenomenon (1), meaning that it is possible for the same individual to be health literate in one context or society but not in another (46). In the most of today’s Western world societies, there are expectations (sometimes unspoken) on the individual to have sufficient knowledge about rights and obligations, to make decisions with regard to health issues, and to take one’s own initiatives in order to maintain and improve health, to make own decisions, to judge when support is needed and to know where to turn when help is needed. In all, this means that being active, independent and self-determined constitutes the “patient’s role”. Arriving from a country where the role is being passive or patient and in which the decision is made from above may mean a move on the health literacy continuum from a sufficient level to an inadequate level of health literacy (1).
The World Health Organization (WHO) (47) has stated that the main force for the health in a population is situated outside the health care systems, and thus health literacy is a responsibility for the society as a whole, i.e. not only for health care organizations. Even if this was not focused on or mentioned in the discussions, everyday life in general includes a great number of more or less conscious decisions that in one way or another may influence health. Some of these may be context related, and thus important to be aware of when a person comes to a new country. To fulfill the expressed need of more contextual health information, this could be made a basic topic in civic orientation courses for newly arrived refugees.
The expressed need of a variation in health information sources, formal as well as informal, also calls for the provision of information outside the health care system. The benefits of oral information that were described, retrieved at sources that are less or more formal, illustrate the importance of the communicative dimension of health literacy (48-50). The examples given by the refugees about spreading health information through group activities, courses and seminars at refugee camps, asylum houses and mosques, as well as on the radio, TV, YouTube, web pages and in public halls, seem creative and worth making use of. Still, the most important aspect for the health care system as well as for other information providers is that health information must be available to everyone, i.e. even to persons who are analphabets or have deficient language skills. Individualized, person-centered and targeted information is desirable (46) to secure that information reaches the persons for whom it is intended.
The category concerning the enablement of communication also illustrates the importance of a person-centered approach in the health care situation, including both the past and present of the person and his/her context. Giving messages (in Swedish) on answering machines or giving automatic responses (also in Swedish) with instructions for button choices when a person calls for help seems unreflected from the perspective of a refugee. The suggestions given by the refugees, including taking into account potential language difficulties in all forms of communication, that more time should be reserved for visits and that professionals should be informed about the specific needs of newly arrived individuals, with their experiences of fleeing and having a foreign background, might serve as guidelines in the development of the health examination for asylum seekers and other forms of health care.
An important attribute of an HLHO is that it includes the population served in the design, implementation and evaluation of health information and services (35), and the results of our study show that the experiences of refugees are worth listening to on an organizational level when planning health promoting or health care activities for them. Health literacy on an organizational level is described to increase individuals’ perception of their self-efficacy in dealing with health-related issues and, as a consequence of that, increases their motivation to take care of themselves (51). One way to reduce existing information inequality in patients at a health care center could be to train healthcare workers in health literacy to raise awareness and knowledge about which patients might need extra attention and consideration and how to assess the information need. Furthermore, the 10 item questionnaire (HLHO-10) (35) could be used to identify and improve specific areas within the health care organization when adopting to the HLHO perspective.
The experiences and needs concerning health-related information that was described by the refugees are related in different ways to the HLS-EU model of health literacy (2). All of the categories included expressions for both needing and wishing to be health literate by having the abilities to access, understand, appraise and apply health related information, which all are central aspects of the model. The refugees gave examples of ways for society to strengthen their abilities to cope with their health issues. This is also in line with the model that suggests that health literacy may be influenced not only by the individual but also by social, societal and environmental factors. According to the model, such actions may have a positive impact on health care use, costs for health care, health behaviors, health effects, empowerment and equity (2).
This was an explorative study aimed at gaining and spreading knowledge about the refugees‘ experiences, described in their own words and based on their own views. The limited selection of refugees (originating from four countries only) may mean that the applicability of the results to other groups of refugees is limited. Another limitation with respect to the applicability of the results is the recruitment of participants from courses in SFI and Civic Orientation. This selection excluded young people (below 18 years) and elderly people (older than 65) as well as people with poor health to the degree that they are not able to participate in those courses.
Collecting data in the refugees’ native languages means obtaining comprehensive information from a group that is otherwise often excluded from research. However, the process of translating data from the languages of origin to Swedish contributes to limitations concerning reasonableness and the accuracy of the results, as the expressions from each participant underwent an interpretation process, which may misrepresent the participants’ actual expressions. These limitations may be further reinforced in the presentation of the results in English.
The pre-understanding of the authors may also have influenced the research process. However, this background may be judged as a resource in capturing the different experiences that were sought in this study. Such experiences may have contributed to the appropriateness of the results of the analysis as well as to the credibility. Another factor that contributes to credibility was that all researchers took part in the last step of the analysis process, which included a check of the consistency between the categories and their content and the empirical data. The fact that the discussions gave rich and meaningful content indicates that the selection of participants was appropriate. According to Graneheim & Lundman (33, 34), this also contributes to credibility. A way to further strengthen the credibility of the results would have been to ask some of the participating refugees to give feedback on the findings. This was not done.
In qualitative research, the intent is to gain theoretical saturation, which may be achieved by the emergence of patterns during the analysis (31). The rule of thumb in focus group research is to create three to four groups and then decide whether further groups are needed (27). The situation in the data collection, with some participants taking more space than others, may mean that some experiences were not expressed. Further, the use of focus groups may have prevented some participants from speaking freely. Opinions other than those described in the four categories may thus exist.