Background
Migration is increasing worldwide. Approximately 281 million persons are migrants globally, and the number is predicted to increase in the future [
1]. With this ongoing global migration and globalisation, many societies have become multicultural, with many migrants (immigrants and refugees) who do not speak the official language of the host country. This could contribute to a communication problem with the healthcare system, inappropriate treatment, and insufficient medication safety [
2‐
4]. Good communication is essential to ensure patient safety, in terms of use of medication by patients [
5]. A recent systematic review [
6] on safety of healthcare for ethnic minority patients (some migrant groups included) concluded that there has been limited focus on improving safety for ethnic minority populations, which remains an under-researched area. People of ethnic minority backgrounds and migrants might experience inequity in the safety of care and are at a higher risk of patient safety incidents and have, for example, higher rates of adverse drug events and dosing errors compared to the population of origin [
6]. Another review of ethnic minority patients (limited number of migrants) in the UK aimed to establish types of and possible medication-related problems experienced [
7]: cultural and religious beliefs, different expectations, language and communication barriers, lack of knowledge of the healthcare services, and underestimating patients’ desire for information were discussed as factors related to problems of taking medications as advised, concern for side effects, risk of adverse drug reactions, and problems accessing healthcare services. However, only two out of fifteen studies included were performed in the patients’ home, and none had made observations of patient’s self-administration. It was concluded that further research is needed and designed to identify and address the needs and perspectives of these groups, particularly as little evidence exists on what influences medication-related problems among migrants.
For migrants, it can be difficult to navigate in, and to get access to, healthcare, within the often complicated and exchangeable systems and models in the organisation of healthcare [
3,
4]. This can be explained by language difficulties but also cultural dissimilarities in beliefs about health and illness and knowledge about the existing healthcare organisation [
4,
8‐
10]. Lack of social support and other socioeconomic factors might contribute to migrants having more difficulties in searching for care [
4]. In general, migrants have poorer health and shorter life expectancy than the population of origin [
11,
12].
In Sweden, the number of migrants has increased from 11% of the registered population in 2000 to approximately 20% in 2022 [
13]. People who have migrated to Sweden come from a variety of countries, at different times, and with different reasons for migration. The pattern of migration changed in the mid 1980s into non-European refugees (mainly from the Middle East and Africa) from labour migrants from Scandinavian and European countries dominating during the industrialisation from the post-war era. In 2015, an unusually high number of migrants from Afghanistan, North Africa, and Syria applied for asylum to nearly all European countries. The third largest recipient country was Sweden [
14]. The foreign-born population is therefore characterised by great diversity. The group of persons born outside Europe who have spent 0–9 years in Sweden are characterised largely by the refugee migration that took place in recent years. However, many migrants have spent a long time in Sweden [
15].
Using medications is a complex process, and language difficulties can play a role in the patient’s adherence to prescribed medications [
16]. Transcultural care emphasises the need to provide care based on the individual’s or group’s culturalhealth beliefs, practice, and values. This determines health-related behaviour, including self-management of medications, and thus affects health. Thus, the primary goal of healthcare should be to provide culturally congruent care. The health care needs to be designed in a partnership between the individual and healthcare staff and an integrated care based on a combination of holistic, generic, and professional care knowledge, and in multi-professional collaboration, to achieve the goal of health and to prevent illness [
17].
How migrants experience medication management at home has been studied to a very limited extent; however, no studies have been found that have been performed in patients’ home, including observations on use of and handling of medications. Little evidence exists on what influences medication-related problems among ethnic minorities, particularly migrants, despite increased diversification of populations in countries throughout the world as well as what support is needed to optimise the use of medications [
6,
7].
Therefore, this study explores diverse foreign-born people’s experiences and perceptions of self-management of medication and determine if there are implications of home-based practice patterns on medication safety, and what factors may support safe medication use.
Methods
Design
A qualitative explorative study design with individual semi-structured interviews and participant observations was used to collect data, as it provides new insights and increases understanding in an area that has previously been investigated to a limited extent. Semi-structured interviews allowed the respondents to discuss the content within a given frame of questions and aimed to reach a nuanced and deeper understanding of the perceptions and experiences of self-management of medications [
18]. Semi-structured interviews may be favourable when studying experiences and perceptions. These often take into account gender and cultural variations, whilst acknowledging there is something fundamental regardless of these factors [
19]. Participant observations based on an observation scheme facilitate collection of data concerning practical procedures and provide complementary information [
18]. The purpose of the observations was to study first-hand what was going on rather than simply assuming what we know. Direct observation of patient care has been used as a reliable qualitative research method to measure errors and adverse events in healthcare [
20]. This method provides insight into the unspoken elements and connects the researcher more closely to the basic human experience [
18].
Setting/inclusion sites
Respondents were asked for participation by staff at a primary healthcare centre and a voluntary organisation (a cooperation with the municipality and the church) in an immigration dense area in Sweden. The voluntary organisation organises courses and gatherings for immigrants to promote the integration process.
Study population and inclusion criteria
A purposeful sampling strategy [
18] was applied. Foreign-born people identified by healthcare professionals as having language difficulties in Swedish that may pose a safety risk in connection with medication use at home were invited to participate. Excluded were individuals < 18 years old or having language problems due to mental or somatic disease or known current drug abuse.
Individuals were asked by staff at the healthcare centre and at the voluntary organisation, and they replied by filing in a reply coupon or answered directly to the question; thereafter, a registered nurse (LH) contacted them to set a time and place for the interview. When the person agreed to participate, the medication list from the medical record was collected (with consent from the informant) from the healthcare centre where the patient was registered, as a support when discussing handling of medication.
Data collection instruments
A semi-structured interview guide and an observation scheme were developed based on a literature review, peer-review with experts, and standardised/validated instruments [
21]. Both were based on the patient’s self-reported use of medication, and observation items within domains known to be relevant to safe medication management, including adherence, knowledge, polypharmacy, attitudes, physical and cognitive ability, and lifestyle [
22,
23]. The semi-structured interview guide included standardised questions on demographic data and questions on four areas: usage of medication, acquisition of medication, facilitation of medication, and conformity with prescribed medication. Probing questions were posed when appropriate, such as what kind, where, and why. Focus areas in the observation scheme were: how the person takes their medication, preparations of medication, time, hygiene, use of medication list, and support in taking/handling medication.
A pilot study was conducted with two persons to test the interview guide for content, understanding and to check the consistency and the observation scheme. As the interviews and observations turned out well, all the material was included in the study.
Data collection/process
Data were collected between May 2022 and January 2023.
The interviews and observations were conducted in the respondents’ homes (n = 9) or at the voluntary organisation (n = 6). A female registered nurse with extensive experiences of caring for patients in home care (LH) collected all the data. She was not involved in the medication management of the study respondents and was not affiliated with the healthcare centre or the voluntary organisation. An authorised interpreter of the same sex and who spoke the same language as the respondent was used.
To enable a comparison between the medication profile and the prescribed medications during the observation and interview with the respondents, the nurse used the respondents’ medication list from the medical record.
The nurse conducted individual interviews and observations of the participants (noted on an observation scheme) in the respondents’ home or in a quiet separate room at the voluntary organisation while the respondent prepared and took their medication. The observation scheme was filled in by the nurse. Occasionally, the nurse asked the respondent for clarification regarding their experiences; otherwise, the observer was quiet. In cases where the observations were conducted at the voluntarily organisation, information regarding the home environment and storage of medications was only requested verbally. The individual interviews were held directly after the observations.
If a discrepancy was noted between the patients’ self-reported use of medication and the medication prescribed, then provided that the respondent consented, a certain contact person (registered nurse) at the healthcare centre was contacted, with the goal of informing the physician responsible for the patient (n = 1).
The interviews and the observations lasted between 0.5 and 2 h (median 33 min). The interviews were audio-taped, and field notes that were both descriptive and reflective were taken.
Data analysis
Data were analysed by inductive, qualitative content analysis to identify recurrent and overarching categories [
18]. Interviews were transcribed verbatim by a professional transcription service. The unit of analysis consisted of both interview transcripts and observations schemes. Data collection and analysis proceeded simultaneously, and the analysis was based on openness for variation in the data and a search for patterns, regularities, and contradictions by comparing the statements from the different respondents. Sampling was continued until the researchers agreed that informational redundancy was achieved, that is, the point at which no new information or themes emerge from the data. First, the transcript from the interviews and the notes from observations schemes were read through thoroughly several times to get a sense of the whole. Meaning-bearing units, that signify the parts of sentences/phrases that carry a meaning were identified and coded as close to the text as possible. Thereafter, they were sorted and compared to identify similarities and differences to find patterns; finally, they were grouped into sub-categories and categories.
In order to increase the trustworthiness of the results, investigator triangulation was used to validate the findings [
18]. The first author conducted the initial analysis and then discussed the codes with the co-authors in order to compare them and verify their categorisation. If needed, the results were discussed among the researchers until consensus was reached. To increase the credibility, the analysis proceeded to the point when no new information appeared in order to achieve maximum of variation. Careful descriptions of the method are given to ensure dependability. Confirmability was reached by illustrating the content of the categories by illuminating quotations.
Discussion
This study is unique as it, through interviews and observations, explores diverse foreign-born people’s experiences and perceptions of self-management of medication, and if home-based practice patterns have implications on medication safety, and what factors may support safe medication. It adds new knowledge on migrants’ experiences of reaching their healthcare centre, facilitation in medication and communication at the pharmacy. The main findings showed that the two first categories represent different patterns among the respondents. One group where the respondents struggled and were dependent on another person to get information about medications, had difficulties in accessing the healthcare centre and felt that the staff did not trust them. The other group of respondents were independent and self-motivated in reaching out to the healthcare centre and in managing their medication. Having a medication list in the respondent’s own language and the option to choose their own language on the answering machine at the healthcare centre were perceived as factors that would facilitate their use/handling of medications. Although it was known that it was impossible to get an interpreter at the pharmacy, they felt there was always a solution for receiving understandable information, which made them feel safe. Notably, this study identified positive practices within pharmacies that contribute to preventing medication-related problems. The broader healthcare system can learn from these practices by incorporating workgroups that include multilingual and multicultural staff, providing lists with contact numbers for staff who speak different languages to facilitate communication and, most importantly, fostering a positive attitude towards patients and work tasks. These initiatives aim to find solutions and deliver high-quality services, thereby positively impacting medication safety for persons speaking different languages.
Is it possible that depending on the year and what kind of reception the respondents received when arriving in Sweden, affected their ability as migrants to get control over their own self-care and medication? In Sweden, the national law on activities for getting established for newly arrived migrants [
24] was passed in 2010 under the Ministry of Employment. Newly settled migrants who have received a residence permit in Sweden are offered an Introduction programme, including a civic orientation course. This programme is intended to facilitate access to the labour market and promote integration. It has been found [
25] that the Introduction programme provides an opportunity to develop knowledge and skills to gain more control over one’s life and participate in the Swedish society. However, this kind of programme has been different over the years in Sweden. Due to the high number of incoming refugees in 2015, referred to as the “refugee crisis” [
26], it is not certain that everyone was offered the Introduction programme. Therefore, this could have affected the respondents’ opportunity to learn about the healthcare system. Thus, depending on what year they arrived in Sweden, this could have influenced their ability to gain control over their self-care and medication management. The findings of this study suggest that the establishment programme could be expanded to include more education in the Swedish language and information about the healthcare system, e.g. purchasing medications.
The majority of respondents in the present study experienced they could not reach/access the healthcare centre. Apart from language problems, it has been shown that lack of social support and other socioeconomic factors might also contribute to migrants having more difficulties in seeking care [
4,
8‐
10]. An integrated care considers both lay and professional beliefs, aiming to provide individualised care that is thus, culturally congruent care [
17]. The results of this study show that the healthcare centre is not completely accessible for this group of patients, namely migrants. Thus, the healthcare centre needs to be developed to be accessible for all patients, irrespective of background. As previously shown [
17], the staff need to be trained to have adequate skills in identifying patients’ individual beliefs, practise and values. There is a need to design care in partnership between patients and staff. Together, they should develop an integrated care, including both professional and lay beliefs, practise and values to achieve the goal of good health and prevent illness. Therefore, the healthcare centre needs to develop and have a strategy/routine to identify these vulnerable patients to prevent adverse events and patient suffering.
This study indicates the need for implementing structures, such as staff education and assessments tools to assist healthcare providers in identifying patient’s needs and those who are vulnerable. Especially since health promotion of migrants in the early post-migration stage and communication is considered to be an important area for patient safety [
27,
28]. Communication barriers or different cultural backgrounds increase the risks to patient safety [
29]. The results show that there is a need to improve safety for migrant patients, and that this is still an under researched area as stated in a systematic review focusing on ethnic minority patients, although there were some migrants included [
6].
With few exceptions, the majority of respondents in the present study claimed they fasted and changed their medication accordingly. This could be a medication safety risk and has been noted in diabetes care [
30]. The recommendation is for the patient and the responsible physician to have a dialogue about suitability and risks that can arise from not taking the medication before the fasting begins. It is important to be aware of this and to understand that medication reviews can be a general way to avoid medication errors and to contribute to medication safety. Religious practices, such as fasting, can have a negative impact on health [
30]. There may be differences between individual perceptions and the healthcare staff where the organisation’s rules and norms prevail [
31,
32]. It is important to be observant of the risk of clashes in case of differing perceptions and, thus, always assess the individual’s perceptions.
The respondents in this study reported no or limited ability to speak Swedish, and one category that was identified was “dependent on another person ”. They experienced that they did not receive information about medication because of the language problems. Moreover, they had difficulties getting access to staff in healthcare and being able to communicate with them, and they felt distrusted and misunderstood. This is in line with previous studies [
2‐
4], which have shown that it can be difficult for migrants to navigate and to access healthcare and that communication problems with staff at the healthcare centre can lead to inappropriate treatment. In fact, many adult migrants do not have appropriate health information and often face difficulties in managing health issues [
33]. Good communication is essential to ensure patient safety, in terms of use of medication by patients [
5].
A pictogram is a graphic symbol conveying specific meanings, which were not mentioned in our results. However, could their inclusion be a suggestion for situations where foreign-born do not understand the language? Previous use of pictograms has shown to contribute to patient safety/adherence if used in combination with good communication [
34].
The findings in this study show that having an interpreter present is the best means to facilitate understanding and safe medication use. According to the Management Act [
35], in Sweden, there is a right to use an interpreter in contact with all public authorities for persons who cannot speak Swedish, and the responsibility for calling upon the interpreter service and obtaining the provision of an interpreter lies with the healthcare service [
36,
37]. However, there is a problem, since the pharmacies are not deemed to be a public authority and do not receive financial support for interpreters. Therefore, they do not use them. Good cooperation between healthcare and the interpreter service has been shown to contribute to high-quality healthcare for patients in need of interpreters to be able to communicate in healthcare [
38]. A scoping review [
39] shows that this is important for a relationship between the migrant and the healthcare professionals in order to promote adequate information about medications. A trusting relationship with the pharmacist leads to increased reliable information being shared about medications, a bridge to the cultural divide, and an understanding for their patient and, subsequently, their compassion and care being improved.
The findings in this study showed that half of the respondents received government support for their medication. Households in the Nordic countries are among the wealthiest in the world. However, in Sweden, the income inequality has increased at a fast pace during the past few decades. It is well established that economic inequality might lead to poverty and increased health inequalities [
40]. In a systematic review [
41], it is shown that socio-economic factors, including language proficiency, level of education, financial burdens, were common themes for non-adherence to medication, compromising patient safety. These findings might be a result of increasing inequalities.
Limitations
We aimed to interview and observe all respondents in their homes; however, due to recruitment problem the majority, nine out of 15, were interviewed in their home and the rest in an environment that was considered familiar and a safe zone for the interviewees. Although patients were asked to participate at the healthcare centre, many turned down the offer. Certain groups of patients are difficult for researchers to access because of their social or physical location or vulnerability. This group of patients are vulnerable, not least due to their experiences related to migration (most were refugees), and therefore, deemed challenging to recruit for research [
42]. While the observation contexts differed, the impact is considered negligible as the same data collection instruments/methods were used, with only storage and home environment differing in observations made at the voluntary organisation, where the majority were conducted at home.
The use of an interpreter was essential for communicating with respondents. To reduce the influence of interpreters, we minimised the number of interpreters and only used gender-matched professionally authorised persons [
43].
The purposeful sampling strategy aimed to include information-rich cases to deepen our understanding of the studied area [
18] and, therefore, explanations cannot be draw from it.
All but one of the respondents were females, which is a limitation. It cannot be ruled out that the results could have been different with an increased number of male respondents. However, carefully collected, analysed and described results are transferable to groups and contexts similar in characteristics [
18].
Potential limitations related to the sampling procedure that could affect the results within the studied group, e.g. education level and time of residency in Sweden, may introduce sampling bias. However, this was considered in the analysis, and no such differences were found regarding educational level or time of residency in Sweden within sub-groups. However, due to the qualitative study design, such relationships cannot be excluded. The study design made it possible to explore different perceptions and experiences to get a deeper understanding of the studied phenomenon, albeit not to seek explanations.
Relevance for clinical practice
The study highlights the importance of identifying individual experiences and perceptions of self-management and medication to visualise aspects that can be improved to promote health and well-being.
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