In this study, healthcare workers discussed psychosocial needs of immigrant patients with DR-TB in Norway. Participants employed in the hospitals mainly described patients’ psychosocial needs during hospital isolation. Meanwhile, those working in primary healthcare primarily linked patients' needs to the delivery of TB medications. Several participants distinguished between the healthcare workers’ objective considerations of the treatment process and patients’ experiences of more subjective issues.
Apart from the problems that will arise with the feeling of being trapped and isolated, it works reasonably well. So, objectively it works, but it is clear that the subjective problems the individual has, they arise anyway. It is almost impossible to avoid. [3 Physician, hospital]
The thematic analysis identified four main themes:
Figure 1. Four identified main themes
Caring for immigrants with diverse backgrounds and needs
The findings reveal that psychosocial needs vary across three key subgroups within the immigrant population: newly arrived immigrants, integrated immigrants, and well-educated migrant workers or foreign students. When discussing immigrants with DR-TB, participants referred to a broad range of needs influenced by factors such as culture, language barriers, residence status, family relationships, social networks and experiences in their home countries or during their refugee journeys. Several participants discussed how patients' education level affects their health literacy and their need for information about their diagnosis and healthcare process.
Some are from South-East Asia, who come here for work immigration … who has a very high level of education. This is completely different to someone who has grown up in a refugee camp in an African country, and in general is more distrustful to authorities, and because of experiences that they have had. Therefore, I think you have to look a little deeper, perhaps at the type of immigrants and the background. [4 Physician, hospital]
If they are refugees, there are many other factors that already affect them. [11 Nurse, hospital]
… the educational level, I would say perhaps is the biggest problem, then, it is very difficult to understand what the disease and treatment is about ... Otherwise, traumas that they have gone through, which means that they have less trust. To cope with the isolation if you have been in prison and things like that. Some of them have smaller networks, of course, than if they are Norwegian. [2 Physician, hospital]
Several participants mentioned patients from Ukraine who have newly arrived Norway, primarily diagnosed through arrival screenings or because of follow-up on prior findings. However, interviewees also mentioned patients who had resided in Norway for several years before being diagnosed, noting that cooperation with this group is generally easier. Additionally, some participants mentioned non-integrated immigrants who live in segregated communities. One participant described a case involving an immigrant who had stayed in Norway for twenty years, has children born in the country, yet still did not speak neither Norwegian nor English.
The longer one has lived in Norway, the easier it generally becomes to convey information. However, this is not always the case. There are quite a few who live fairly segregated lives, even though they have lived in Norway for a long time. [1 Physician, hospital]
They have more confidence in the system, as they are not arriving in a state of alert after a long run and similar experiences. [2 Physician, hospital]
One participant shared her experiences about patients without residence permit and living in asylum centers, noting the added burden faced by these immigrants compared to those with legal residency.
It is a state of emergency when you live in an asylum centre and do not receive a response to your application. It is very mentally stressful for people, I have experienced. Therefore, if people have lived here for a while, they have more stuff in order. They have a general practitioner, they may be in a job, they have gone to school, and they have applied for family reunification or perhaps received it. Therefore, I think that in general, things are a little easier. They are somewhat familiar with their local community, they know how to get from a to b. [12 Nurse, hospital]
The importance of trust and communication
The interviews revealed that newly arrived immigrants often have limited knowledge of and trust in the Norwegian healthcare system, society, and institutions. As a result, patients frequently require repeated explanations of the healthcare system functions. Participants linked the lack of trust to patients' previous negative experiences of health authorities. Several participants emphasized the importance of building relationships between patients and healthcare workers, especially at the start of treatment.
Those who come directly from another country, who have a completely different trust to authorities and do not dare to speak up. Often, they also have poor trust … the way we, as doctors and healthcare workers, who are questioning and somewhat patient centered ... For them, it feels like they might lose a bit of trust because we initially are not very authoritative. However, I think they will understand our style in a few days, and we can even joke about it. [6 Physician, hospital]
Interviewees described that patients express their needs differently. Some patients communicate their needs clearly and talk about their experiences, including trauma and war, while others require a more established relationship before communicating their needs. Several participants acknowledged that both the disease and hospital isolation may exacerbate the patients’ prior traumatic experiences
We do not know what they have been through before. Many have been on the run and have experienced trauma, and if they have recently arrived in Norway, they may not have had time to process anything before being placed in isolation. [8 Nurse, hospital]
Furthermore, many patients have … psychological concerns they bring with them, if they have fled from war or other experiences. They may have many worries and thoughts beyond just tuberculosis … additionally, contract tuberculosis on top of everything else. [10 Nurse, hospital]
Stigma
Several participants noted that some patients avoid discussing psychosocial issues, such as mental health, attributing this behavior to cultural stigmatization. Additionally, interviewees reported that patients with infectious lung DR-TB, particularly those living in asylum centres, fear exclusion and stigma after discharge.
What do other people think of me now? They are afraid they must be trapped in that room all the time … What happens when I move on with my life? Will people look at me and think, I am contagious? … It is a challenge, but often, talking about it makes it easier. [10 Nurse, hospital]
If we perceive that the patient is struggling mentally, I feel that we utilize the mental health services available at the hospital. However, it can be challenging, as the patient may not always want this help. There are also communication barriers to consider. And mental health combined with ethnic identity can, in itself, be somewhat burdensome. [1 Physician, hospital]
While some participants noted that TB-related stigma is a minor problem in the Norwegian community or healthcare, they acknowledged that it remain prevalent within the communities from which patients originated. Some participants distinguished between anticipated stigma and experiencing stigma.
Psychosocially, it still is a disease associated with stigma, especially in the local communities, where many of these patients come from. However, I do not feel it is a significant issue in Norway … They may feel stigmatized, even if they are not necessarily experiencing it within the Norwegian healthcare system. [1 Physician, hospital]
Coping
Healthcare workers noted coping strategies exhibited by patients. Despite the significant stress associated with long-term, demanding treatment and often hospital isolation, several participants observed that patients generally cooperate and adhere well to the treatment process.
Many express that it is hard to be isolated, to live in uncertainty for many weeks to months. I think many people do that. However, the main impression is that they manage it very well. [1 Physician, hospital]
However, interviewees also noted instances of non-adherence due to psychiatric issues, addiction, and side effects. In primary healthcare, some participants reported two specific cases with non-adherence: one involving a patient with psychiatric issues and another involving a migrant worker who repeatedly left Norway to visit his home country, and both dropped out of treatment.
I think that most patients follow-up very well. There are exceptional cases, may be related to psychiatry, addiction and the like, which can be a challenge, and also the patients with side effects. [13 Nurse, hospital]
Good communication is essential
All participants emphasized the importance of communication and providing tailored information to ensure patients’ understanding of their condition and the necessary precautions. The interviewees also acknowledged that effective communication is essential for healthcare workers to grasp patients' psychosocial needs. When patients do not express their experiences and emotions, healthcare workers may misinterpret their behaviour, such as avoiding diagnosis and treatment. Several participants pointed out that language barriers often complicate information exchange. Understanding patients' cultural backgrounds was seen as crucial to the communication process, a point emphasized by several participants.
It is difficult for us to understand them and for them to understand us … And especially for them to understand that they have to take that treatment when they do not really feel sick. [8 Nurse, hospital]
Participants highlighted the importance of providing patients with information in their own language, noting that the use of interpreters is essential to meet this need. However, they reported differing practices in the frequency of interpreter use. Interviewees working in hospitals typically relied on interpreters to convey medical information, whereas those in primary healthcare settings rarely, if ever, used them.
Providing information is very important, and one should try to communicate as effectively as possible about the illness and treatment. The use of an interpreter is essential. [1 Physician, hospital]
I believe that for home nurses, this is a significant barrier. They lack routines for ordering and using interpreters, and they are not familiar with the process. [12 Nurse, hospital]
Participants expressed concern that use of an interpreter does not guarantee accurate communication, emphasizing the importance of repeating information to ensure mutual understanding.
Good information that is the most important thing, and good interpreters. It is not always that easy, we do not have complete control over what the interpreters say. We do not understand, it is in the nature of the matter. [3 Physician, hospital]
I have experienced several times that patients convey that the interpreter was not good. [12 Nurse, hospital]
Psychosocial needs during hospital isolation
One participant believed that the hospital isolation itself poses the greatest challenge to patients’ psychosocial health. Participants who cared for patients isolated in hospitals emphasized the importance of building strong relationships between patients and healthcare workers. From the first encounter, participants reported focusing on gradually providing information to avoid overwhelming patients, particularly in cases of contact tracing. One participant stressed the need to maintain patients’ dignity and preserve trust while addressing failure in infection control precautions, whether due to misunderstanding, substance abuse, or other factors.
I think it will be too much and that control tracing and things like that … these kinds of rapid-fire questions … that should wait until you have an ok relationship. That you start by thinking, what we should give you and not what you should give us. [6 Physician, hospital]
Participants were aware that modest patients, those who are introverted or reluctant to disclose mental or social issues, may receive less thorough follow-up. Many participants noted encountering such patients, who claim that everything is fine, while in reality, they often underreport their symptoms and concerns.
I find it challenging when it is not easy to read what the patient is feeling. Some patients are very closed off. You ask how they are doing, how they feel, and you get very brief responses, but from their behavior, you can tell things are not going well. [10 Nurse, hospital]
It can be a challenge that symptoms and issues are underreported, especially as we have seen among Ukrainian men. This includes both physical symptoms and side effects, as well as mental challenges that may be related to tuberculosis itself, but also perhaps related to other experiences. [5 Physician, hospital]
Needs is often expressed very little verbally, I think. It is almost never what they say that initiates action on our part. Sometimes there are specific things related to economy, bills and work, at that level. [6 Physician, hospital]
Two participants recounted situations where isolated patients did not leave their rooms simply because they had not requested it, while other patients who explicitly asked, were granted permission. One participant stressed that the isolation room is not a prison and highlighted the discrepancy in permissions for patients with DR-TB compared to those with sensitive TB. They who cared for patients in isolation rooms with direct access to outdoor areas did not mention issues related to leaving the isolation room.
I have also had immigrants … who are well informed and have a high education level. They also make greater demands …If the patient asked to go outdoor, I have seen that they are allowed to do so. If there are modest patients, then probably some have not been outdoors … That is how I think it is. [13 Nurse, hospital]
Participants described a wide range of patient behaviors, including staying in bed, reluctance to eat or go outside, and exhibiting signs of sadness, irritability or aggression. They emphasized the necessity of addressing both these behaviors and the external factors contributing to patients' distress. One participant mentioned that problems often arose at night and on weekends, when obtaining an interpreter was more difficult.
They are upset, crying, and telling us that they are struggling. They might become withdrawn, staying in bed and showing little interest in eating or going outside … isolate themselves and show no interest in having contact with others or us. Some may exhibit signs of aggression or irritability, as we have seen in a few cases … There is a wide range of reactions. It is important to note any changes from their usual behavior and consider underlying reasons. [5 Physician, hospital]
Separation from family and children during hospital isolation
Isolation in hospitals means separation from family and children, and several participants talked about how this affects patients’ well-being. They observed a wide range of family situations, from patients living alone in Norway to those residing with large families. An abrupt transition from close family living to confinement in an isolation room, can be particularly challenging. Several participants described that this transition is worse for patients who are poorly informed and do not fully understand the purpose of their treatment and isolation. Further, participants had observed that isolation is worse for immigrants with limited social network in Norway or who have arrived alone as refugees.
Perhaps the worst thing for them is to be alone and not have their family around them, and the understanding of why they must be isolated. It is difficult when someone comes and takes over and controls your life. In a way, you are deprived of something. [8 Nurse, hospital]
It varies how much support they have … whether they have come alone as a refugee or they have their entire family with them. Therefore, there is quite a lot of variation. [4 Physician, hospital]
Some participants described the challenges faced by isolated patients who care for minor children. One participant emphasized that healthcare workers have a duty to identify the needs of patients' minor children and ensure that they are properly cared for. Some participants noted that older siblings often assume caregiving responsibilities for younger children. Additionally, participants highlighted cases where patients were not adequately informed about the details of their hospital admission, including isolation requirements and their implications. As a result, many patients had not arranged care for their children.
It is a problem that they arrive without having received information about what will happen. That they are unprepared. That they have not spoken with everyone they need to before being admitted, and a plan has not been made for their children either. It is easier to accept isolation when you have the necessary information. [8 Nurse, hospital]
The issue with children is challenging, especially for mothers with children living with them … Often, we see older siblings taking on this role. It can be challenging to manage school and leisure activities while also caring for one or more siblings due to their mothers’ absence. [8 Nurse, hospital]
Some participants pointed out that digital tools and opportunities make it easier for hospitalized patients to stay in contact with their families and friends.
In a way, it is perhaps easier to be isolated, because you can be social through social media. [12 Nurse, hospital]
Are outpatients` psychosocial needs recognized?
Assessing patients’ psychosocial needs after hospital discharge was not a priority for many healthcare workers. Some physicians admitted that they focused primarily on the somatic aspects of treatment during outpatients follow-ups, while psychosocial support was often neglected unless the patient explicitly requested it.
We are very somatically oriented. It is not that we ignore an unhappy outpatient, but we do not have a routine to ask how they are doing beyond their illness. I believe we address it to some extent, but I do not think there is a significant focus on the psychosocial aspect. [1 Physician, hospital]
Participants in primary healthcare described their role as delivering medications, typically through DOT. Some acknowledged that their work is reactive, addressing problems as they arise. When patients express a need for additional support, healthcare workers will reach out to other health professionals for assistance. Some participants discussed the challenges faced by patients with inadequate housing and poor economic conditions.
There are many challenges related to economy, which makes it difficult. We have cases of people who have come as migrant workers, they may lack of proper employment contracts, and are not paid when they are hospitalized, and perhaps lose the opportunity to work when they come out again, because they have lose their work contracts. [8 Nurse, hospital]
Additionally, there can be challenges in planning the next steps after leaving the hospital, such as finding suitable housing, economic constraints or not having enough money ... There is a lot to manage. [10 Nurse, hospital]