Open access peer-reviewed chapter
Abstract
PROMs are questionnaires used as tools in medical diagnostic assessment and treatment. The patient’s cultural background influences how they understand the PROMs’ concepts and questions. Forward-and-back-translation is traditionally seen as “gold standard” for translating texts. However, differences in idioms, linguistic nuances etc. may make even translated PROMs difficult for immigrant patients to understand. So do lexical gaps in the translation, i.e., missing concepts and discrepancies between the two languages and cultures in question. Translators need to have intimate knowledge of both cultures as well as of the professional terminology in question. Poor linguistic and/or cultural translations cause lack of understanding of the PROMs’ questions and answer options. If the filled in PROMs do not reflect the patient’s health situation, this creates a risk of non-treatment, insufficient treatment, or even an erroneous diagnosis. To safeguard correct understanding, it is important to discuss the PROMs with the patients.
Keywords
- chronic pain
- immigrants
- PROMs
- translation
- linguistic and cultural understanding
1. Introduction
Humans have migrated all through history, but most likely never on the current scale. United Nations [1] estimates that there were around 281 million international migrants globally in 2020. Migration contributes to a more culturally diverse population, which makes cultural competency in healthcare, defined as “the ability of systems to provide care for patients with diverse values, beliefs, and behaviors, including tailoring delivery to meet patients’ social, cultural, and linguistic needs” [2], more important than ever before.
Illness symptoms, including pain, are personal phenomenon and an individual experience [3]. The expression and experience thereof may therefore be difficult to fully grasp in any patient. If the patient has a different cultural and linguistic background than the healthcare personnel, this may make the situation even more complicated [4].
One way to learn about patients’ medical situation is to use Patient-Reported Outcome Measures (PROMs). PROMs are questionnaires used as tools for the assessment of medical problems and the clinical efficacy of prescribed treatments. This chapter is based on an empirical study conducted at a Norwegian hospital’s outpatient clinic for patients with chronic pain. The six PROMs included in the study are used at this clinic to assess the patients’ health- and pain-related symptoms, quality of life, and daily functioning [5]. These are as follows:
The Modified Oswestry Disability Index (MODI), which maps the patient’s pain-related disability.
A body sketch on which patients mark the location of their pain.
Pain characteristics, which define the pain as continuous, intermittent or continuous with aggravated episodes.
EQ-5D-5L, which measures the health-related quality of life of a patient and was originally developed by the EuroQol Group in 1991 [6].
Hopkins Symptom Checklist-25 (HSCL-25), which tracks anxiety and depression.
Bodily Distress Syndrome (BDS), which tracks functional disorders.
Based on these PROMs, individualized treatment plans are created which guide therapeutic communication and facilitate optimal treatment outcomes. The clinic staff finds it problematic that immigrant patients often fill in the PROMs insufficiently or, as they often suspect, erroneously, factors which make diagnostic work and treatment difficult. These uncertainties created the following research questions:
May the problems found concerning the data many immigrant patients present in the PROMs be caused by the language in which they are coached even when the text is translated into the patients’ home language? If so, what are the challenges in connection with the translation of PROMs?
How do immigrant patients at the outpatient pain clinic experience filling in PROMs translated into their mother tongue?
The content of the PROMs listed will not be discussed.
2. Research methods
A descriptive and explorative multi-method design was used to answer the two research questions. Regarding the first question, translations of the PROMs used in the pain clinic were conducted into Urdu, Somali, Arabic, and Polish, the four languages most common in the hospital’s patient population. The translations were conducted according to the “gold standard” for professional translations with the target language versions being translated back into Norwegian (the source language) by bilingual translators other than those who conducted the forward translations ([7], p. 33). The four translators translating the PROMs into Urdu, Somali, Arabic, and Polish respectively, were asked about their experiences with the translations and the challenges with the work. Additionally, three experienced translators other than those doing the translations were interviewed about this kind of translational work in general.
To answer the second research question 12 patients, three from each language background, four women and eight men, were interviewed. The participants were aged 30–73 years (mean age: 48.5) and had lived in Norway for 4–46 years. The interviewees were recruited from the outpatient clinic. The purpose of these interviews was (1) to test the understandability of the translated PROMs, and (2) to investigate whether there might be similar linguistic and cultural issues concerning the understandability of the translated PROMs across languages and cultures. The PROMs functioned as interview guide. Professional interpreters assisted during four of the interviews.
2.1 Data analysis
All the interviews were transcribed by the first author. The actual thematically analysis was conducted by both authors. Thematic analysis is “a method for identifying, analyzing, and reporting patterns (themes) within data” that occurs in six phases ([8], p. 7):
2.2 Ethical considerations
The study was approved by the hospital’s Privacy Ombudsman for Research. The interviewees were informed orally and in writing that participation was confidential and voluntary and that they were free to withdraw from the project at any time. All participants signed an informed consent form. Recordings were deleted after transcription, and transcriptions were stored according to ethical research guidelines [10].
3. When culture and language are treated as separate entities
The concept of culture “originally referred to the humanist ideal of what was civilized in a developed society (e.g., music, art, food, and drink, dress, language, and so on)” [11]. Later it is described as how people live (e.g., rituals, traditions, etc.) and, according to Katan [12], forces in society or ideology. In intercultural communication, misunderstanding does not only arise through language but through other silent, often hidden, or unconscious factors caused by cultural differences. Without the non-verbal, “‘silent, ‘hidden’, and ‘unconscious’ factors”, which are so important in transmitting messages across cultures, it is difficult to determine how a text is meant to be understood.
Cultural translation is an important part of linguistic translation (Yan and Huang (2014, in [11]), as translations need to explain, point out, and reconcile differences of understanding between the communicating parties. From this point of view, besides being translators of texts, translators are also cultural mediators.
The success of the medical treatment offered is to a large degree based on the patients understanding the content of the PROMs [13] they are to fill in, and through this, responding to the questions and statements correctly. There is an underlying expectation that these texts are perceived as clear and understandable by any and all patients. This means that also immigrant patients with linguistic and cultural backgrounds, very different from the majority population, are expected to understand the purpose of the PROMs and the linguistic form they are couched in. Our study, however, shows that many immigrant patients neither understand the questions nor the answer options as presented in the PROMs even when translated into their native language [9], and it is a problem that most clinicians probably are unaware of this [14]. The challenges that members of the majority population may face in understanding certain PROM questions will not be discussed here.
4. The translation process
Although translation and interpretation require somewhat different skill sets, they are closely related as the medium is language and the goal is to facilitate communication by creating linguistic and cultural understanding. The translational and interpretational services company Lionbridge [15] explains the difference thus:
“Translation focuses on written content. It requires a high level of accuracy and can take time to produce. Interpretation deals with the spoken word and is delivered immediately. It prioritizes understanding and communication over perfection”.
Whereas interpreters perform immediate interpretations by transposing the source language within the spoken context, preserving the meaning of the oral message and conveying it in phrases that the target audience, in this case, the patient, can comprehend, translators, on the other hand, transpose the source language into the target language in written form. This can include various mediums such as written texts like this book, multimedia, subtitling of films, software etc.
Forward-and-back-translation is considered the “gold standard” for translating texts [16]. Forward translation can be described as “translation of the original language, also called source version of the instrument into another language, often called the target language”. On the other hand, back translation is “translation of the new language version back into the original language” [16].
As seen above, both Sanarifar and Ayob [11] and Katan [17] understand cultural translation as an important part of linguistic translation. This makes the translation of PROMs a particularly difficult task as the cultural background influences how the questionnaires’ concepts and questions are meant to be understood [18], a background PROMs do not supply. Added to this comes the variety of idioms, linguistic nuances etc. between the original and target languages.
According to Gordon [19], communication is “the exchange of meanings between individuals through a common system of symbols”. Between languages, this “common system of symbols” may be lacking. Moreover, one of the translators we interviewed, pointed out that “Norwegian”, as many other Western languages, “is much more succinct than Arabic. In the Arabic language, one uses many more words, while in Norwegian, one goes straight to the point”. Even when PROMs are translated into the patients’ mother tongue, such issues may cause the concepts used in them to be foreign. An example of this is the word
4.1 Lexical gaps
In addition to these problems, there may also exist
Lexical gaps are created “when the source language expresses a concept with a lexical unit where the target language expresses the same concept with a free combination of words, or with phrases” (Darwish, 2010, in [11], p. 24). This means that there will always exist discrepancies between the two languages and cultures in question, which serve as significant barriers to equivalence of meaning. One of the translators pointed out that Norwegian, for instance, “is much more succinct than Arabic. In the Arabic language, one uses many more words, while in Norwegian, one goes straight to the point. […] One uses a lot of synonyms in Arabic; words with the same meaning are used one after another, for instance, afraid, distressed, and anxious when one is worried about something, to make the statement stronger” [9] (p. 17).
PROMs are developed to catch the medical problems the patient may have—whether of somatic or mental origin—and tend to reflect the biomedical environment they are produced in. Specialized terms developed in one culture will often lack equivalents in a language reflecting another culture. Hence, Sanarifar and Ayob [11] point out that “[d]ifferent word-forming mechanisms and metaphorical uses of words, …, have expanded the gaps between the two lexicon systems”.
Another common form of language gap is that concepts that are to be translated are missing in the target language. An example of this is the term “anxiety”, which according to one of the Arabic translators we interviewed tends to be understood as being worried [9].
4.2 Cultural adaption of concepts
Brislin et al. [20] hold that “a target language version resulting from poor translation might still retain much of the source language’s structure, so that it is easy to back-translate correctly despite translation errors. In this case, although back-translation is used, the target language version may not be appropriate for use with the target population”. Thus, even when the forward-and-back translation method is diligently followed, the translations may not be culturally congruent.
Even when texts are correctly translated, the wording may not be used in common lay language, which makes the text less readable and understandable by patients, particularly those without a higher education. This can be even more challenging when the words also need to be culturally adapted to be understood. For instance, Arabic is a main language in 22 countries, and the language has developed somewhat differently in the different countries [21]. An Arabic translator explained that “there are many words in the written language that are not used in everyday speech. No matter how good the translation is, this could be a problem” as “there are terms that are not used in oral language”. Thus, besides the differences between written and oral languages, dialectic differences may also create problems [9].
When going through the filled in PROMs together with our patient interviewees, we found that several had misunderstood central concepts and/or left questions unanswered. The translation must be culturally well adapted to secure that the target language text mirrors the
The absence of context is an additional challenge in making questions and statements comprehensible. Besides intimate knowledge of both cultures, translators of PROMs “must have knowledge of western biomedicine and its vocabulary as well as of the patient’s understanding of the situation” [22]. One of the interviewed translators held that “there is too little collaboration and too much procedure. […] Proof reading must be done by healthcare personnel who have the target language as their native tongue, not a new translator. A professional within the field and the translator need to prepare the final version together” [9] (p. 17). This is in line with the WHO’s [23] recommendation that “a health professional, familiar with terminology of the area covered by the instrument” should conduct the translation and that “his/her mother tongue should be the primary language of the target culture” (p. 1). The question is how many professional interpreters can fill such a requirement.
All this show that “the process of translating and adapting a PROM for a different cultural group can be arduous ... However, unless this process is successfully implemented, the validity of the [clinical data collection] may be suspect” [14] (p. S124) or simply incorrect. Incompetent translations of PROMs may lead to inadequate, or even erroneous, diagnoses, and treatment. Our study shows that healthcare personnel needs to talk to immigrant patients about their perceptions and interpretation of the translated PROMs to clarify problematic concepts and topics.
If patients have problems understanding the questions and/or the answer options presented in PROMs even when these are translated into their home language, an interpreter must be called in to help explain difficult expressions and words. If the translation of the PROMs is poor or erroneous, or the concepts used are unfamiliar even to the interpreter, either problem will make him/her unable to interpret the text in a meaningful way. During our interviews with translators who also served as interpreters, they reported encountering instances where PROMs were poorly translated, resulting in many questions being unintelligible not only to the patients but also to the translators themselves. This was the case even when the text was supposedly in the patient’s native language [9]. They find that simple questions tend to be adequately translated, while longer and more complicated ones may either be totally unintelligible and/or extremely poorly translated due to inadequate knowledge of the target language, the culture, and the medical terminology. This may make quite a few PROM questions unanswerable for the patient.
One of the patient interviewees pointed out that “there are some who are not able to read so much”. Both the patients’ level of education and level of health literacy may influence their ability to fill in PROMs. These factors do not only influence the immigrant population, of course. Health literacy and understanding of medical expressions vary in any population.
5. Patient experiences from filling in PROMs
Our upbringing, education, social background, life experiences, personality, psychological get-up, and thoughts about the reason and mechanism behind our illnesses all contribute to shaping us as persons and as patients. These factors also influence healthcare providers in their interaction with patients. Both culture and religion may influence on how illness is understood, and symptoms are expressed. Illness and pain may, for instance, be experienced as important spiritual or psychosocial aspects of one’s life. As an example of this, Koffman et al. [24] found that black Caribbeans tended to see pain as representing a trial or test of faith. “This meaning was associated with confirmation and strengthening of religious belief and loyalty to God” (p. 354). Shahin et al. [25] found that immigrants may attribute illnesses like hypertension to fate and thus, “use their prayers to God as a treatment modality rather than using medicines” (p. 11). Some of our interviewees even indicated that the fact that they experienced illness as part of their spiritual lives, made it difficult to comprehend certain PROM concepts.
Several researchers hold that effective management of pain may be compromised if cultural and/or religious perspectives are ignored or discounted [26, 27, 28]. And, “[u]nless one realizes that patients may have a totally different understanding and expectations than those hailing from biomedical philosophy, and take this into consideration, patient teaching cannot be successful, which may impair treatment outcomes” [22] (p. 2). Hence, one must try to learn about the patients’ perspective on the psychological, social, cultural, and spiritual significance of their symptoms [29] even though this is information that is not part of any PROM questionnaires we so far have seen.
As discussed above, our study shows that lack of understanding and/or misunderstanding of concepts used in PROMs translated into their home language is quite a common problem. Moreover, patients told us that they had left PROM questions unanswered not only due to lack of comprehension but because they had found them culturally inappropriate or taboo for religious reasons. Among these aspects, there were questions related to mental health, suicide, and sexual life. This is in line with Aithala et al. [30] who in their Indian study found that 56.8% of the patients did not answer the questions related to sexual activity. While some of our interviewees expressed a preference for talking about mental problems with members of the healthcare staff, others said they only would discuss such questions with close family member. The latter attitude is mirrored by Giacco et al. [31] who found that immigrant patients may be reluctant to seek help outside the family if they have concerns about the family’s reputation.
Some of the patients complained that it was tiring and even upsetting to having to spend time and effort answering questions they perceive as irrelevant, when “no response option fits”, and/or when they must answer more or less the same questions in the various PROMs. Furthermore, those who had repeated appointments at the pain clinic found it irritating to answer the identical set of PROMs on every visit: “The same questions again and again … exactly the same questionnaires. I have had back problems for three years and the same questions every time”.
For patients who are already exhausted from their medical condition, filling in PROMs may be draining. Physical and mental exhaustion can make it harder to concentrate and to understand the questions. And, of course, they need to be able to read. Being presented with a stack of PROMs to be filled in can be particularly overwhelming for those with limited education or poor reading skills.
6. Conclusion
Our study shows that lack of understanding and/or misunderstanding of concepts used in PROMs translated into their home language is quite a common problem. PROMs are becoming increasingly important tools for mapping symptoms and evaluating clinical care and their impact on patients’ daily life. As the filled in PROMs serve as guides for the healthcare-patient communication and collaboration, translational errors and lack of cultural congruence may be a seriously weak point in their use. If patients misunderstand or cannot make sense of the PROM questions, this may lead to a false start in the healthcarer-patient relationship and perhaps even lead to misdiagnosis and erroneous treatment.
Whatever the reason behind the problem, this shows the importance of allocating time to talk to the patients after they have filled in the PROMs, however, perfect the translation of the questionnaires may be. This is to safeguard correct understanding of the questions and thus provide the best possible insight into their situations and secure the best possible person-centered treatment program.
When problems relating to culturally or religious inappropriate or taboo questions occur, it is important for healthcare professionals to have cultural sensitivity, as “[a] key factor of cultural sensitivity is learning to ask the right question … with the right content and in the right manner” [32]. This is clearly a challenge when using standardized PROMs. Explaining beforehand that some questions may seem irrelevant and even very private might partly solve this problem. If the PROMs are not filled in correctly according to the patient’s health situation, the PROM will not map the symptoms they are supposed to catch, a situation that jeopardizes both the healthcare-patient collaboration and the creation of a tailored treatment plan. This creates a risk of non-treatment, insufficient treatment, or even an erroneous diagnosis and treatment [33, 34].
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