Beyond the Diagnosis: Exploring the Psychosocial Impact of Drug-Resistant Tuberculosis on Patients in Norway

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Iversen This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-4024614/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 4 You are reading this latest preprint version Abstract Background: This study aims to explore the varied experiences of patients with resistant tuberculosis in Norway, particularly among immigrants. The study emphasizes challenges and implications of being diagnosed with resistant tuberculosis, including the impact of psychosocial health during the disease, treatment, isolation and recovery phases. Norway is a low endemic country of tuberculosis. Most patients are immigrants and some have recently arrived in the country. Patients undergoing treatment for drug-resistant tuberculosis endure prolonged and demanding treatment that could affects their psychosocial health. Methods: This qualitative research approach conducted 16 in-depth interviews with individuals diagnosed and completed treatment for resistant tuberculosis, aged 18 and above, mean age of 33.6. The majority of the participants were immigrants, and eight of them had resided in Norway for less than four years before diagnosis. Data analysis followed the six-phase reflexive thematic analysis framework outlined by Braun and Clarke Results: The narratives of the participants highlighted the complexities of navigating the TB diagnosis, treatment, side effects and life after treatment. Immigrants encountered additional challenges, including language barriers and adapting to new social environments. All participants reported experiencing physical health issues which additionally affected their mental health and social activity. Many participants had persistent problems at the time of the interviews. Several participants expressed social isolation, and those with confirmed contagious pulmonary tuberculosis experienced hospital isolation up to six months. Three main themes emerged from the analysis: Delayed diagnosis despite seeking health care; Hospital isolation and social isolation; The life after tuberculosis. “They just think that I am healthy”. Conclusion: This study highlights the enduring impact of DR-TB on patients, the significance of timely diagnosis, the challenges within healthcare services and the importance of psychosocial support. The participants universally faced serious implications of the disease, including stigma and isolation, alongside reflections on missed early intervention opportunities. The need for enhanced healthcare awareness, improved communication and post-treatment follow-up is underscored. Further research conducted in low endemic countries should evaluate the recommendations on psychosocial follow-up after introducing short-oral treatment. drug-resistant tuberculosis psychosocial health patients’ experiences low-endemic countries qualitative research Introduction Tuberculosis (TB) is an infectious disease caused by Mycobacterium tuberculosis, with pulmonary TB being the most common form and potentially contagious. However, TB can affect any organ in the body ( 1 ). The World Health Organization (WHO) defines drug-resistant tuberculosis (DR-TB) as a TB disease caused by a Mycobacterium tuberculosis complex strain resistant to any TB medicine. Multi-drug resistant tuberculosis (MDR-TB) is defined as resistance to at least rifampicin and isoniazid ( 2 ). Patients affected by DR-TB receive a complicated treatment, which often is associated with severe side effects, and they usually need longer hospital isolation if they are contagious. In 2022, WHO estimated 10.6 million new TB cases, 1.3 million deaths and 410,000 cases with rifampicin-resistant (RR-TB) strains ( 1 ). This study uses the term DR-TB to encompass both DR-TB and MDR-TB, specifying MDR-TB when necessary. In Norway with a population of 5.4 million, 174 people were diagnosed with TB in 2022, and of those ten had MDR-TB. Individuals who were born abroad were primarily affected, and 72 of them had stayed less than four years in Norway ( 3 ) The global TB situation and immigration significantly influence TB incidence and resistance patterns ( 3 ). The Norwegian TB control program mandates tuberculosis screening for individuals from countries with high incidence of TB, who plan to stay in Norway for more than three months, as well as for all refugees and asylum seekers ( 4 , 5 ). Diagnosis and treatment are free of charge regardless of residence permit status ( 4 ). The Union's recommendations (2021) aim to address the psychosocial needs of TB patients and encourage their active participation in treatment. This initiative recognizes the importance of a holistic care aiming to create a supportive environment for patients, and the target groups are healthcare personnel, governments and TB support providers ( 6 ). A systematic review and meta-analysis (2018) found high prevalence of mental disorders and common social stressors like stigma, self-isolation or lack of social support among DR-TB patients. This highlighted the necessity to integrate assessment of mental health, social protection and social support in TB guidelines and in clinical TB-treatment ( 7 ). Other researchers reported that TB treatment can have long-term adverse effects on patients' health, even years after successful treatment ( 8 – 10 ). This underscores the need for continuous support and monitoring for TB survivors to address these persistent challenges ( 8 , 10 ). Providing person-centred care entails assessing of determining factors of patients’ psychosocial health and is one of the pillars in the program of the Stop TB partnership. This approaches prioritize the individuals’ unique needs and fostering a more effective and compassionate healthcare environment ( 11 ). Assessing patients’ psychosocial health includes examination of stigma associated with tuberculosis (TB stigma). TB-stigma contributes to feelings of isolation, shame and fear of discrimination. A review in 2022 concluded that there is limited evidence on interventions aimed at reducing TB stigma ( 12 ). The Stop TB Partnership has developed a framework to understand different types of stigma ( 11 ). Self-stigma encompasses when TB patients accept negative stereotypes and behave in a manner that endorses them. Enacted or experienced stigma reflects the range of stigmatizing behaviours that are either directly experienced by individuals with TB or drive others to act through discrimination, rejection or isolation in various settings ( 11 , 13 ). This study aimed to understand the diverse experiences of patients diagnosed with resistant tuberculosis in Norway, particularly among immigrants and minorities. It emphasizes the challenges and implications, including the impact on psychosocial health throughout the disease trajectory, encompassing treatment, isolation and the recovery phase. Method Study design and data collection The qualitative research approach employed semi-structured interviews to delve into the experiences of DR-TB patients. Thematic analysis was used to examine the data, focusing on identifying patterns in participants' experiences, thoughts, expectations and attitudes. This method was chosen to facilitate a deep exploration of the nuanced and varied experiences of individuals affected by DR-TB ( 14 , 15 ). The study included individuals above 18 years who had been diagnosed with and completed treatment for DR-TB. Participants were sourced from TB registers at three university hospitals in Norway, covering the period from 2008 to 2020. Out of 31 individuals invited, 16 participated, comprising five men and 11 women aged between 19 to 71 years, with a mean age of 33.6. The majority were immigrants. Table 1 presents the descriptions of the participants. Interviews were conducted in two phases: ten in the autumn of 2019 and six in the autumn of 2021. Participants were provided with written details about the study's purpose, procedures, their rights and ethical considerations, in Norwegian or English, with adjustments made for language barriers. Interviews, conducted both in-person and via video call, explored their TB experiences and psychosocial health impacts. The interviewer was the first auditor (ES). All interviews were audio recorded and transcribed, and durations were ranging from 42 to 88 minutes. Table 1 Descriptions of the participants MDR TB (%) (n = 8) DR-TB (%) except MDR-TB (n = 8) Total (%) (n = 16) Gender Male 2 ( 25 ) 3 (37.5) 5 (31.25) Female 6 (75) 5 (62.5) 11 (68.75) Age group (years) during treatment (mean 34 years) 20–39 8 (100) 5 (62.5) 13 (81.25) 40–59 2 ( 25 ) 2 (12.5) > 60 1 (12.5) 1 (6.25) Civil status and children < 18 years during treatment Single 3 (37.5) 3 (37.5) 6 (37.5) Married/ partnership 5 (62.5) 5 (62.5) 10 (62.5) Children < 18 years 5 (62.5) 3 (37.5) 8 (50) Continent of origin Africa 5 (62.5) 3 (37.5) 8 (50) Asia 1 (12.5) 2 ( 25 ) 3 (18.75) Europa 2 ( 25 ) 1 (12.5) 3 (18.75) Norway 2 ( 25 ) 2 (12.5) Education (years) No school/ 13 2 ( 25 ) 5 (62.5) 7 (43.75) Years in Norway before treatment for immigrants (n = 14) 10 1 (12.5) 2 ( 33 , 3 ) 3 (21.4) Table 2 Classifications of the diagnosis MDR TB (%) (n = 8) DR-TB (%) except MDR-TB (n = 8) Total (% of total) (n = 16) Start of treatment (year) 2009–2014 4 (50) 2 ( 25 ) 6 (37.5) 2015–2020 4 (50) 6 (75) 10 (62.5) Duration of treatment (months) 9–12 3 (37.5) 6 (75) 9 (56.3) 13–18 1 (12.5) 2 ( 25 ) 3 (18.7) > 19 4 (50) 4 ( 25 ) Organ affected Pulmonal 6 (75) 2 ( 25 ) 8 (50) Abdomen 1 (12.5) 2 ( 25 ) 3 (18.75) Skeleton/ skin 2 ( 25 ) 2 (12.5) Lymph node 1 (12.5) 2 ( 25 ) 3 (18.75) Reported delayed DR-TB diagnosis 3 (37.5) 5 (62.5) 8 (50) Analysis of data Analysis was conducted in accordance with six detailed phases in reflexive thematic analysis, described by Braun and Clarke ( 14 ). 1) ES read the transcripts to become familiar with the data, and then re-read them to identify units of the text referring to challenges encountered by participants before, under and after being diagnosed with DR-TB. 2) Case by case ES coded units into analytic categories by using the software qualitative data analysis system, NVivo. NVivo facilitated the structured coding of the interview transcript ( 16 ). ES and the last author (VI) then reviewed each category for coherence and data adequacy. 3) By comparing categories across the cases and referring to the full interviews, ES grouped the categories into initial themes by merging sub-categories. 4) As part of further development of themes, ES presented preliminary themes to all the authors, who reviewed and gave input on the themes. 5) ES and VI functioned as auditor to refining and defining the themes before 6) final writing up. The resulting themes were then reviewed again and discussed in the member group. Ethics The ethical approval for the study was granted by Regional Committee for Medical and Health Research Ethics of Central Norway (REK), 2018/1813/REK mid. The privacy impact assessment (DPIA) has been performed. Participation was voluntary, and written informed consent was obtained. The participants were informed that confidentiality and anonymity were safeguarded. The information and consent form was prepared according to guidelines of REK. Reflexivity The authors' backgrounds in working with TB patients and immigrants shaped the study's design and analysis. These experiences contributed to a deep understanding of the subject matter and facilitated a nuanced approach to exploring the participants' experiences with DR-TB. The authors emphasized reflexivity in recognizing their own influence on the research. This reflective practice enriched the study's insights, grounding its conclusions in both empirical evidence and informed empathy ( 14 , 15 , 17 ). Results The participants' narratives highlighted the complexities of navigating the TB diagnosis, treatment, side effects and life after treatment. Table 2 presents classifications of the disease. Immigrants faced additional challenges, including language barriers and adapting to new social environments. All participants reported one or more physical problems like dizziness, nausea, hearing loss, nephropathies and other serious conditions. MDR-treatment led to increased occurrence of side effects. Many participants had persistent problems when we conducted the interviews. Their physical problems further affected their mental health and social activity. The thematic analysis revealed three main themes and six subthemes (Table 3 ), showcasing the diverse experiences and challenges faced by DR-TB patients. Table 3 Themes and subthemes Theme 1: Delayed diagnosis despite seeking health care Delayed diagnosis. I visited my general practitioner several times Diagnosis period. A tentative cancer diagnosis or waiting for resistance patterns Theme 2: Hospital isolation and social isolation Psychosocial impact of hospital isolation. Break from the isolation life was important Psychosocial impact of social isolation, caused by treatment, stigma and/or lack of knowledge Theme 3: The life after tuberculosis. “They just think that I am healthy” Nothing feels as before If I cannot accept it, it will be my burden, and I try to move on Theme 1: Delayed diagnosis despite seeking health care The first theme highlighted the participants' struggle with delayed diagnosis despite proactive efforts to seek medical help. Many encountered problems in securing hospital referrals for further diagnosis, despite experiencing severe pain, serious symptoms of lung disease or abdominal issues. Some participants received cancer as a tentative diagnosis, and other participants had to await resistance pattern analysis before commencing treatment. This prolonged diagnostic journey was described as a very exhausting period by the participants. Delayed diagnosis. I visited my general practitioner several times One participant evaluated diagnosis, treatment and isolation period like this: If I want to summarize: general practitioner problem. Treatment went perfectly well for me. I have no complaints, because I knew what was going on. If it is unknown, there is a problem. [Participant 9 – Man, p.11] Eight participants reported experiencing serious symptoms and made multiple attempts to contact the primary healthcare, but received minimal follow-up. Three participants described persistent coughing, fever, weight loss of up to ten kilos and experienced that their general practitioner (GP) did not take their symptoms seriously (Table 4 , Q1). Two of them reported persistent damage to their lungs, described as cavities. Another participant, with TB in the cervical vertebrae which entailed pain, stiffness and minimal muscle function in one arm, contacted her GP many times asking for referral to hospital. She reported that she needed to pretend losing consciousness to secure admission to the hospital for further medical diagnostic (Table 4 , Q2). Participants with abdominal TB found it challenging to pinpoint when the TB symptoms began, as they had experienced stomach issues many years before receiving diagnosis. One of them experienced that HP dismissed her abdominal problems as solely psychological. She thought that some physicians were unaware that TB could manifest in the abdomen (Table 4 , Q3). Several participants expressed the belief that earlier intervention by their GPs might have prevented serious illness and mitigated the extensive sequelae of TB (Table 4 , Q4). Diagnosis period. A tentative cancer diagnosis or waiting for resistance patterns Some participants associated their TB with cancer and death, with some receiving a tentative cancer diagnosis. One participant, a mother of two small children, shared her feelings when healthcare personnel informed her about a potential cancer diagnosis. When later receiving information about TB instead of cancer, she felt more optimistic that she would manage the treatment well. This was before she experienced MDR-TB treatment. Another participant reported that healthcare personnel consistently concluded that it looked like cancer, and she obtained much information about a cancer diagnosis with high mortality (Table 4 , Q5). Some participants were aware that they had TB but awaited resistance pattern analysis. Two of them were contagious, hospital isolated and experienced severe disease development. One of them underwent multiple changes in medication during her six-month hospital isolation period and also reported severe side effects of the medicines (Table 4 , Q6). Table 4 Illustrative quotes from Theme 1 Theme 1: Delayed diagnosis despite seeking health care Quotations (Q) in text Illustrative quotes Subtheme: Delayed diagnosis. I visited my general practitioner several times Q1 16 Woman (p29): “ So, I came again and told her, I am very sick, I am coughing a lot, I have a fever and stuff like that. So, she said, maybe you have a cold ... take cough syrup or something ... she did not help anything, she did not know ... I could not go to school or do anything.” Q2 10 Woman (p1 and p15) : “I could not sleep, did not eat, and I just sat at night… it was just a pain … doctor said: I do not see anything. So in the end my husband called an ambulance ... he said, she is unconscious.” “That is why I came to hospital.” “I went to him (GP) until I got a free pass … If better knowledge had been given for him.” Q3 15 Woman (p2) : “I got worse and worse. I could not eat food ... she did not listen to me. So, then she ended up throwing me out of the doctor's office, because I thought she did a bad job ... I have never known that you can have TB elsewhere than in the lungs. And I don't think very many doctors know that.” Q4 12 Woman (p7) : “I should have been diagnosed much earlier because then I might have not gotten it in my back and been so bothered Subtheme: Diagnosis period. A tentative cancer diagnosis or waiting for resistance patterns Q5 15 Woman (p3) : They always concluded that it looked like cancer … I was mentally quite out of it, because it was a disease, I read up and down about, when I received the cancer diagnosis. And it was a very little survival.” Q6 16 Woman (p2) : "That time was very difficult for me. I had to wait a month for the medicine. A month, they said, no, that medicine have no effect, we are going to start another medicine.” “So, it became very difficult to walk with my legs, and tired and lethargic, I did not eat any food … I was nauseous and vomiting all the time, had a fever and very bad. … Fortunately in the end, I'm healthy." Theme 2: Hospital isolation and social isolation Social isolation stemmed from various factors, including the disease itself, medication side effects, stigma, and a lack of awareness within the community. Eight participants mentioned enduring prolonged periods of hospital isolation. Psychosocial impact of hospital isolation. Break from the isolation life is important Hospital isolation imposed an additional psychosocial burden on the participants. They understood the necessity of this approach and mentioned important justifications, such as protecting children, families, communities and healthcare personnel. Several participants emphasized that receiving regular updates from a trusted physician was of great importance to manage this period. One participant expressed a desire for more frequent information and stressed the specialists’ responsibility to communicate their knowledge (Table 5 , Q7). Some participants experienced isolation far from their homes and seldom received visits from their families. One of them wanted to avoid these meetings and painful farewells with her young children. However, healthcare personnel supported her and said that she and her children needed these meetings (Table 5 , Q8). Some participants appreciated that healthcare personnel recognized their sadness and spent time with them for conversation and social recreation. Everyone emphasized the importance of being able to leave their isolation rooms, spend time outdoors and meet their family and friends. However, some participants mentioned not being permitted to go outdoors for the first few weeks or even up to two months. Other participants reported no restrictions of getting outdoor and had access to a park directly from their isolation rooms. These participants also had the opportunity to meet other TB patients and peers in this park. One participant who had recently arrived in Norway, stated that access to fresh air protected her against depression (Table 5 , Q9). Several participants highlighted the importance of internet access and staying connected with the outside world. Psychosocial impact of social isolation, caused by treatment, stigma and lack of knowledge The participants’ activity were limited, and several of them reported side effects, which contributed to keeping them in their bed many hours after getting medicines. One participant told about nausea which contributed to social changes like stopping university education and minimal contact with friends. She said that TB and treatment might have been some sort of a traumatic experience. Some participants announced that they had depression during the treatment, but only a few were offered follow-up by psychological teams. One participant who was isolated in hospital for one month and reported social isolation afterwards, talked about mental problems and post-traumatic stress disorders after wars. He did not mention this to healthcare personnel and received no support for these problems during the TB treatment period. One participant needed to ask several times to meet a psychologist. It was important for her that a psychologist told her, that some of the TB-medicine could affect her mental health (Table 5 , Q10). Several participants reported social isolation caused by experienced or self-stigma, lack of public knowledge of TB and also their own fear of being contagious. When they experienced that people kept distances, they avoided further social contact (Table 5 , Q11). Several participants did not expect others to understand their complicated situation, and found it challenging to explain about their DR-TB (Table 5 , Q12). One participant said that she chose not to disclose her disease because she wanted to avoid appearing weak. Another participant had experienced racism in her native country and wanted to protect herself against racism in Norway. She asked herself questions such as “What do they think about us coming here with illness and bringing disease?” One participant with noncontagious abdominal TB opted not to tell anyone to prevent worrying his schoolmates. He had a tough time and did not manage to follow his study program during the disease. Two participants reported encountering stigma while visiting outpatient clinics and perceived that healthcare personnel lacked knowledge about TB (Table 5 , Q13). One participant who returned home to his wife and two young children after four and a half months of hospital isolation, described the fear of still being contagious (Table 5 , Q14). Several participants chose not to inform their families about their illness to spare them worries, despite the disease seriously affecting them (Table 5 , Q15). Several participants experienced that openness highlighted their needs, protected them against social isolation and supported them through the TB-period. One participant did not feel any shame, because TB is “airborn”, and it was nothing she had done. Some told that contact tracing in the municipality, made their contagious TB disease visible for their network. No participants complained about this procedure. Table 5 Illustrative quotes from theme 2 Theme 2: Hospital isolation and social isolation Quotations (Q) in text Illustrative quotes Subtheme: Psychosocial impact of hospital isolation. Break from the hospital isolation life is important Q7 3 Man (p5) : “I think this is the work that any doctor in hospital always should do, when they got something ... to inform the patient … He should focus on his seriousness, not only dictation, work and other stuff, because at that time they did not give me a clear answer.” Q8 16 Woman (p11) : “My daughter was two years old. She wanted to stay with me, she wanted to kiss me ... So that time was very hard for me … I told the doctors, I don't want them to come ... However, no, they said, they need you." Q9 4 Woman (p8 and p 10) : "After three weeks, they said I could go out.” “I was looking forward going out ... I was very, very sad, every day, so I had to think of something that made me happy … If I did not, I would get crazy.” Sub-theme: Psychosocial impact of social isolation, caused by treatment, stigma and/or lack of knowledge Q10 15 Woman (p6 and p9) : “I asked several times to see a psychologist, and finally I got to talk to a psychologist, who I did not think really understood me.” “I remember getting paranoia ... Anyone had told me about these side effects.” Q11 4 Woman (p8) : “They refused to eat at the same table with me ... I tried ... to meet others, so I just, keep it myself, I don't go out anymore, after that.” Q12 15 Woman (p9) : “You become very isolated. I wasn't social, I didn't talk to people … You don't encounter understanding and people don't understand what you're going through, so it just becomes tiring to deal with people.” Q13 13 Woman (p9) : “The gynaecologist was not too happy that I came ... I realized that. I was angry … the doctor, acted as if he had no good knowledge … I felt badly treated.” Q14 6 Man (p11) : “There were a lot of children, and if the bacteria remains, I thought things like that … You know it when you're cured, however, you're not cured, but infection-free, but anyway it's a bit like that.” Q15 3 Man (p6) : “The doctors, they asked me to tell them (the family in his native country), so they could go to diagnosis. … I did not want to do that … If I told them, especially my mum … another sickness so ... but if I told them when I was in hospital, it would be hard for them.” Theme 3: The life after tuberculosis. “They just think that I am healthy” All participants reported that they had completed treatment, and nobody had experienced relapse after being cured in Norway. They described physical- and psychosocial impacts and a fear of relapsing. Nothing feels as before Several participants reported that the TB-period contributed to persistent problems and changes in their life. They talked about pain, weakness and hearing loss many years after completed treatment and had descriptions like never regaining strength and nothing feels as before (Table 6 , Q16). One participants paused the school for four years due to pulmonary sequelae and breathing problems. Several participants said that it was troublesome to explain the lost years, and why they did not manage the normal educational- and job progresses. Some participants was still thinking about being contagious many years after completed treatment, and a grandfather talked about avoiding close contact with grandchildren. A father told that when his children had a cold, he still thought about his past MDR-TB contagious period (Table 6 , Q17). Similarly, another participant remained preoccupied with her contagious period, which had contributed to a child becoming infected. Despite undergoing mandatory TB screening and receiving no restrictions working with children, she still felt guilty (Table 6 , Q18). One participant experienced TB relapse ten years after being cured in his native country and thought that this could occur again (Table 6 , Q19). Two other participants said they felt healthy shortly after stopping the medications and continuing their jobs and other activities. If I cannot accept it, it will be my burden, and I try to move on A participant described how she experienced to loose years of her life, when she was newly arrived in Norway and wanted to focus on family, education, job and friends. Sometimes I still cry, because I feel like I lost some years of my life ... If I did not get the illness, perhaps I could study Norwegian earlier, perhaps I could have gotten a job earlier, perhaps I could have a network earlier ... So yes, it affected me, and my life. However, I could not turn back to the, I already have missed. We have to live, what is given for us …, it scared me for life… if I cannot accept it, it will be my burden, so I just try to move on. [Participant 4 – Woman, p.16] One participant reflected on how TB made it clear to him that life could be gone very quickly, prompting a change in his perspective, and he started to take everything from life. Another participant had learned that she could follow her goal to complete her education at the university despite hearing loss and other complicated events in her life. She wondered what her life might have been like if she did not experience these challenges. She was happy that she was healthy, but also sad about her experiences. She experienced problems accepting acquired hearing loss and still wondered why they had given her medicines, which contributed to this outcome (Table 6 , Q20). One participant said that she did not focus on the lost years and wanted to look forward. The most important thing was to cure the TB, follow physicians’ advices and be there for her family and children. Another participant described that she was struggling for several years to return to her job and normal life (Table 6 , Q21). She compared TB and cancer, if she had had cancer, there would have been many available support options. She experienced that when she had completed treatment for MDR-TB, healthcare personnel informed her that she was healthy, and that everything was fine. She claimed that it was difficult to receive understanding and support to manage life after completing TB treatment (Table 6 , Q22). Table 6 Illustrative quotes from theme 3 Theme 3: The life after tuberculosis. “They just think that I am healthy” Quotations (Q) in text Illustrative quotes Subtheme: “Nothing feels as before” Q16 1 Woman (p12) : “In the left arm and leg ... can't lift with it ... the foot, still hurts a little, but these are worse sometimes and get better sometimes. Nothing feels as before, yeah.” Q17 6 Man (p13) : “If the children have a cold and such, and then you start thinking … this feeling will be in my whole life.” Q18 13 Woman (p3) : “It is still uncomfortable, that I know that children is infected.” Q19 3 Man (p7) : "Why did it came back after all these ten years? Now, still I am afraid, if it could come back after some years, or is it already destroyed in my body.” Subtheme: If I cannot accept it, it will be my burden, and I try to move on Q20 8 woman (p 2 and p19) : “I wonder why I got injuries for the rest of my life in a country that is so modern. I wonder about that all the time." “I wonder ... how my life could be now ... and the years when I was ill, meant that I could not learn anything, it is almost three years. I think I could have finished university by now ... I am glad that I am healthy. I am also sad that I experienced that.” Q21 15 Woman (p8) : “It makes me a little sad that they do not take the patients seriously, just listen to them a little more. And not just wrapping everything up, that it's just mental.” Q22 15 Woman (p7 and p9) : “Who guides you through the build-up period?” “With cancer and other types that are quite well known, you get a lot of offers, don't you, and understanding. However, when it comes to TB, they just think you are healthy. That everything is good.” Discussion This study aimed to delve into the experiences and perceptions of patients with DR-TB and shed light on the psychological and social dynamics they encountered. It sought to understand how patients perceived their illness, interacted with the healthcare system and managed relationships with others throughout their diagnosis, treatment and recovery processes ( 14 , 15 , 17 ). The study revealed that DR-TB significantly impacted individuals across different backgrounds in Norway, including both immigrants and natives. The severity of the disease, its side effects, isolation and stigma contributed to the hardships faced by patients. Notably, eight participants experienced delayed diagnoses due to inadequate follow-up from the healthcare service that affected them during and after treatment. Information and communication The participants’ met challenges related to receiving adequate information and education regarding their complex situations. Language barriers might have had an impact and potentially also limited their understanding of their rights and opportunities. These findings underscore the critical needs for person-centred and holistic care approaches ( 18 , 19 ). Key elements of person-centred care include health education, improved communications, respect and psychosocial support. Such approaches prioritize addressing individual's specific health needs and personal preferences, empowering patients to gain a better understanding of their experiences ( 20 , 21 ). The utilization of interpreters is emphasized as crucial support for achieving mutual understanding between healthcare personnel and patients. In Norway, the regulation established in 2021 mandates public services' responsibility to utilize interpreters, aiming to safeguard patients' rights in this domain. This regulation ensures that individuals who do not speak the local language, have access to quality healthcare by facilitating effective communication through professional interpreting services ( 22 ). Mutual understanding, knowledge and effective communication are crucial factors that can significantly enhance the TB treatment process. These elements contribute to a more informed and engaged patient experience, enable better adherence to treatment protocols, reduce misunderstandings and foster a supportive healthcare environment that aligns with patients' needs and circumstances. Delayed diagnosis Many participants, whether dealing with pulmonary or extrapulmonary DR-TB, experienced that primary healthcare personnel did not recognize their serious TB symptoms, resulting in delayed follow-up and diagnosis. Early recognition and addressing of symptoms is a cornerstone of the WHO's strategy to combat TB, emphasizing the critical need for heightened awareness and prompt action in the healthcare to improve outcomes ( 23 ). Healthcare personnel might lack specific knowledge regarding TB and the unique challenges faced by immigrants with serious illnesses. A study from Norway in 2018 highlighted that GPs seldom had consultations with TB patients, indicating a gap in TB-specific knowledge within primary healthcare. This gap underscores the need for enhanced training and resources to better manage the TB diagnostic ( 24 ). Healthcare personnel need to consider the specific situations of immigrants to fully understand and address their challenges, and diverse publications offer valuable insights and recommendations. These findings emphasize the importance of culturally sensitive care, accessibility, awareness and the need to effectively support immigrants dealing with TB ( 25 – 27 ). An Italian study (2018) identified several factors contributing to delays in TB diagnosis, including limited knowledge about TB, financial burdens related to transportation to healthcare facilities, geographical distance to these centres, prior unspecific treatments and significant weight loss. These findings underscore the complex interplay between socioeconomic factors, healthcare accessibility and awareness ( 28 ). Our study revealed that delayed TB diagnosis was frequently attributed to a lack of knowledge among both patients and healthcare personnel. Although the exact factors leading to late diagnosis remain unclear, this study identified inadequate follow-up as a contributing factor. Norway's provision of free transportation, screening and control of TB ( 4 ) is a significant measure to support timely diagnosis and treatment. Mental health and isolation The participants described facing a challenging period, with many reporting feelings of depression. However, they mentioned a notable lack of psychological support during their treatment, particularly in hospital settings. Our findings on depression align with global data indicating a high prevalence of comorbid depression among TB patients ( 7 , 29 ). A publication from 2017 highlighted that clinical depression in TB patients can be triggered by the disease itself, associated stigma and side effects from TB medications. Additionally, TB can exacerbate existing social vulnerabilities, pointing to the complexity between the disease and the broader socioeconomic factors affecting patients ( 29 ). This underscores the importance of monitoring the mental health of patients undergoing DR-TB treatment and highlights the need for integrated care approaches that address both physical and psychological aspects ( 29 , 30 ). The inclusion of psychosocial approaches in the Norwegian TB guidelines (2023) signifies a recognition of the importance of addressing the mental and social aspects of TB care ( 5 ). Stigma remains one of the challenges in TB control, and addressing stigma is crucial for improving patient outcomes and the effectiveness of public health strategies ( 11 , 12 ). Participants in our study reported both experienced and self-stigma. They experienced stigma both in their network and in hospital. In addition, a sense of unease gripped some participants who knew that they had been contagious, contributing to feelings of shame or guilt. Few participants reported targeted healthcare measures to maintain mental health or to protect against stigma. Healthcare personnel and collaborators must support patients in transforming self-stigma to self-worth. The Stop TB Partnership points out that reducing TB stigma may facilitate early diagnosis and full recovery ( 11 ). A systematic mapping review (2016) considered TB stigma in low-incidence countries and found limited studies compared to the extensive evidence in the HIV field ( 13 ). This indicates a need for more studies on TB stigma as a social determinant of health to understand its impact and to develop effective interventions. The long periods of hospital isolation experienced by participants raise concerns about impact on their mental and social well-being. With the introduction of new and improved medicines, the necessity and duration of such isolation should be re-evaluated ( 2 ). The WHO's Ethics Guidance for the Implementation of the End TB Strategy advises against isolating TB patients without first exploring all options to ensure treatment adherence and only under specific conditions ( 23 ). Participants valued measures that improved their management during isolation, including access to fresh air and visits from family. However, they expressed a need for better communication with healthcare personnel regarding their condition and treatment plans. Establishing a trust-based relationship through effective interaction and clear communication is crucial for patient support and management during the TB treatment process ( 21 ). The experiences of getting outdoors from isolation varied among participants, with direct outdoor access from isolation rooms being a significant factor in their well-being. Healthcare personnel must acknowledge and address the psychosocial needs of TB patients during isolation and upon discharge, ensuring clear communication about their situation and the care plan to mitigate further psychosocial difficulties. The WHO’s recommended all-oral short regime from 2022 has great significance for patients with MDR-TB ( 2 , 31 ). A Publication from 2019 noted that although new tools and treatment regimens have been introduced, advances must also be made in providing high quality, person-centred care to protect against morbidity and stigma associated with tuberculosis ( 18 ). However, with shorter treatment, patients may still experience side effects from medications, need isolation when they are contagious and associate TB with a serious disease and stigma. Those treated prior to the introduction of shorter regimes, carry their own experiences and consequences, and these highlight the ongoing need for supportive care and attention to individual experiences. Challenges after completed treatment Several participants struggled to regain their physical and psychosocial health after completing TB treatment. One participant reported a lack of support after completed treatment, which contrasts with the rehabilitation services often available to cancer patients. A systematic review (2021) quantified the prevalence and types of permanent TB related disabilities and reported that the most common disability was mental disorders ( 32 ). A study from 2020 evaluated permanent respiratory TB sequelae in Mexico and Italy and pointed to the necessity of pulmonary rehabilitation ( 33 ). Long-term health impacts emphasize the importance of monitoring comorbidities such as permanent disabilities and mental disorders, underscore a broader need for comprehensive post TB care and ensure a holistic approach to patient recovery and well-being ( 32 – 34 ). Healthcare personnel must guide patients in managing health challenges and recommend further follow-up when necessary. Effective collaboration among DR-TB patients, hospital staff, primary healthcare and municipal entities is essential for facilitating a smoother transition to a healthy life and ensuring comprehensive support and care continuity. Strength and limitations The study acknowledges limitations due to the lack of participation from some invited individuals, particularly those with language barriers and those who declined after consulting with family members. Although the participants managed English and Norwegian well, many of them did not use their native languages during the interviews, potentially affecting their expressions and nuances. Despite these challenges, the inclusion of 16 diverse participants is considered a strength, as it provided a rich variety of narratives that contributed to valuable insights into the research question. This diversity ensured that the study captured a broad spectrum of experiences and perspectives on living with and treating TB, enhancing its informational power and relevance. Conclusion This study highlights the enduring impact of DR-TB on patients, emphasizing the importance of early diagnosis, the challenges within healthcare systems and the necessity of psychosocial support. Despite variations in their experiences, participants universally faced serious disease implications, including stigma and isolation. Expressions of gratitude towards family, healthcare services and the government were common, alongside reflections for missed early intervention opportunities. This study underscores the need for improved healthcare awareness, communication and follow-up after completed treatment. We recommend further studies in low endemic countries to evaluate the recommendations for psychosocial follow-up after introducing short oral treatment for resistant TB. Declarations Ethics approval and consent to participate: The ethical approval for this study was granted by the Norwegian Regional Ethics Committee (REK) 2018/1813/REK, ensuring adherence to ethical standards. A privacy impact assessment (DPIA) was also conducted. Participation was voluntary, with written informed consent obtained from all participants. Confidentiality and anonymity were safeguarded, aligning with REK guidelines to protect participants' privacy and rights throughout the research process. Consent for publication: We informed all participants about planned publication and obtained written informed consent. Availability of data and materials: The transcribed narratives of the participants are not publicly available due the participants’ confidentiality and anonymity. Fragments of the data material might be available on reasonable request to the corresponding author. The dataset is available 5 years after the end of the project in accordance with the REK's ethical approval. Competing interests: Not applicable Funding: Not applicable Economic support: The study has received financial support from the Clinic of Medicine, Trondheim University Hospital and The Joint Research Committee between St. Olavs hospital and the Faculty of Medicine and Health Sciences, NTNU (FFU). Authors' contributions: ES wrote the main manuscript text. All authors reviewed the manuscript and their feedback were included. All authors have contributed to analysis, developing of themes and writing up. ES and VI controlled the research process and informed IH and BE about this. All authors have assessed the manuscript before submitting. Acknowledgements: Not applicable Authors' information (optional): Not applicable The authors confirm that the manuscript earlier has not been published or submitted. The first author contributed a short oral presentation of the study on the Union conference in Paris 2023. References World Health Organization. Global tuberculosis report 2023 Geneva: World Health Organization,; 2023 [updated 2024.02.07. Available from: https://www.who.int/teams/global-tuberculosis-programme/tb-reports/global-tuberculosis-report-2023 . World Health Organization. WHO operational handbook on tuberculosis. Module 4: treatment - drug-resistant tuberculosis treatment, 2022 update Geneva: World Health Organization. 2022. Licence: CC BY-NC-SA 3.0 IGO; 2022 [updated 2024.02.07. Available from: https://www.tbonline.info/media/uploads/documents/9789240065116-eng.pdf . Nordstrand K, Arnesen T, Mengshoel A, Strand Å, Ingebrigtsen T, Heldal E, Stecher M. Årsrapport 2023 Tuberkulose i Norge 2022 - med behandlingsresultater for 2021 (Annual report 2023 Tuberculosis in Norway 2022 - with treatment results for 2021). Oslo, Norway: Folkehelseinstituttet; 2023 [updated 2024.02.07. Available from: https://www.fhi.no/contentassets/1a18d78701514f199d7bdc19ee14fa3f/arsrapport-for-tuberkulose-i-norge-2022_endelig.pdf . Helse- og omsorgsdepartementet. Forskrift om tuberkulosekontroll (Regulation on tuberculosis control Norway). Norge: LovData. 2009 [updated 2024.02.07. Available from: https://lovdata.no/dokument/SF/forskrift/2009-02-13-205 . Folkehelseinstituttet. Tuberkuloseveilederen (The Norwegian Tuberculosis Guidelines). Oslo: Folkehelseinstituttet; [updated 2024.02.07. Available from: https://www.fhi.no/nettpub/tuberkuloseveilederen/ . Sah S, Craig G, Mandelbaum M. Psychosocial counselling and treatment adherence support for people affected by tuberculosis [Guide]. France, UK: The Union and TB Alert; 2021 [updated 2024.02.07.; First edition:[Available from: https://theunion.org/technical-publications/psychosocial-counselling-and-treatment-adherence-support-for-people-affected-by-tuberculosis-tb . Alene KA, Clements ACA, McBryde ES, Jaramillo E, Lönnroth K, Shaweno D, et al. Mental health disorders, social stressors, and health-related quality of life in patients with multidrug-resistant tuberculosis: A systematic review and meta-analysis. J Infect. 2018;77(5):357–67. Datta S, Evans CA. Healthy survival after tuberculosis. Lancet Infect Dis. 2019;19(10):1045–7. Datta S, Gilman RH, Montoya R, Cruz LQ, Valencia T, Huff D et al. Quality of life, tuberculosis and treatment outcome; a case-control and nested cohort study. Eur Respir J. 2020;56(2). Allwood B, van der Zalm M, Makanda G, Mortimer K. The long shadow post-tuberculosis. Lancet Infect Dis. 2019;19(11):1170–1. Stop TB, Partnership. TB Stigma Assessment - Implementation Handbook Geneva, Switzerland: Stop TB Partnership,; 2019 [updated 2024.02.07. Available from: https://www.stoptb.org/stp-tb-stigma-assessment-implementation-handbook . Nuttall C, Fuady A, Nuttall H, Dixit K, Mansyur M, Wingfield T. Interventions pathways to reduce tuberculosis-related stigma: a literature review and conceptual framework. Infect Dis Poverty. 2022;11(1):101. Craig GM, Daftary A, Engel N, O'Driscoll S, Ioannaki A. Tuberculosis stigma as a social determinant of health: a systematic mapping review of research in low incidence countries. Int J Infect Dis. 2017;56:90–100. Braun V, Clarke V, Thematic Analysis A. Practical Guide: SAGE Publications Ltd; 2021. Malterud K. Qualitative research: standards, challenges, and guidelines. Lancet. 2001;358(9280):483–8. Dhakal K, NVivo.. J Med Libr Assoc. 2022;110(2):270–2. Willig C. In: Edition T, editor. Introducing qualitative research in psychology. Berkshire McGraw-Hill Education; 2013. Furin J, Cox H, Pai M, Tuberculosis. Lancet. 2019;393(10181):1642–56. Auer C, Mazitov R, Makhmudov A, Pirmahmadzoda B, Skrahina A, Dobre A, et al. Factors contributing to drug-resistant tuberculosis treatment outcome in five countries in the eastern Europe and central Asia region. Monaldi Arch Chest Dis. 2020;90(1):151–60. Furin J, Loveday M, Hlangu S, Dickson-Hall L, le Roux S, Nicol M, Cox H. A very humiliating illness: a qualitative study of patient-centered Care for Rifampicin-Resistant Tuberculosis in South Africa. BMC Public Health. 2020;20(1):1–11. World Health Organization. WHO operational handbook on tuberculosis. Module 4: treatment - tuberculosis care and support Geneva: World Health Organization. 2022 [updated 2023.11.30. Available from: https://iris.who.int/bitstream/handle/10665/359147/9789240053519-eng.pdf?sequence=1 . Arbeids- og inkluderingsdepartementet. Lov om offentlige organers ansvar for bruk av tolk mv. (tolkeloven) (Regulation of interpretation in Norway). Lovdata. 2021 [updated 2024.02.07. Available from: https://lovdata.no/dokument/NL/lov/2021-06-11-79 . World Health Organization. Implementing the End TB strategy: the essentials Geneve: World Health Organization,; 2022 Update [updated 2023.11.09. Available from: https://www.who.int/publications/i/item/9789240065093 . Aadnanes O, Wallis S, Harstad I. A cross-sectional survey of the knowledge, attitudes and practices regarding tuberculosis among general practitioners working in municipalities with and without asylum centres in eastern Norway. BMC Health Serv Res. 2018;18(1):987. Kumar B, Siem H, Haavardsson I, Winkler AS. Migrant health is global health. Tidsskr Nor Laegeforen. 2018;137(1). Abebe DS, Lien L, Hjelde KH. What we know and don't know about mental health problems among immigrants in Norway. J Immigr Minor Health. 2014;16(1):60–7. Woldesemayat EM. Tuberculosis in Migrants is Among the Challenges of Tuberculosis Control in High-Income Countries. Risk Manag Healthc Policy. 2021;14:2965–70. Quattrocchi A, Barchitta M, Nobile CGA, Prato R, Sotgiu G, Casuccio A, et al. Determinants of patient and health system delay among Italian and foreign-born patients with pulmonary tuberculosis: a multicentre cross-sectional study. BMJ Open. 2018;8(8):e019673. Sweetland AC, Kritski A, Oquendo MA, Sublette ME, Norcini Pala A, Silva LRB, et al. Addressing the tuberculosis-depression syndemic to end the tuberculosis epidemic. Int J Tuberc Lung Dis. 2017;21(8):852–61. Sweetland AC, Galea J, Shin SS, Driver C, Dlodlo RA, Karpati A, Wainberg ML. Integrating tuberculosis and mental health services: global receptivity of national tuberculosis program directors. Int J Tuberc Lung Dis. 2019;23(5):600–5. Furin J, Isaakidis P. Being heard on all-oral therapy for resistant tuberculosis. Lancet Infect Dis. 2022;22(7):923–4. Alene KA, Wangdi K, Colquhoun S, Chani K, Islam T, Rahevar K, et al. Tuberculosis related disability: a systematic review and meta-analysis. BMC Med. 2021;19(1):203. Tadyanemhandu C, Chirenda J, Garvey C, Metcalfe J. Treatment success, but living with the consequences of posttuberculosis sequelae. Int J Tuberc Lung Dis. 2020;24(7):657–8. Harries AD, Dlodlo RA, Brigden G, Mortimer K, Jensen P, Fujiwara PI, et al. Should we consider a 'fourth 90' for tuberculosis? Int J Tuberc Lung Dis. 2019;23(12):1253–6. Additional Declarations No competing interests reported. Cite Share Download PDF Status: Under Review Version 1 posted Editorial decision: Revision requested 15 Mar, 2024 Submission checks completed at journal 12 Mar, 2024 Editor assigned by journal 12 Mar, 2024 First submitted to journal 07 Mar, 2024 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-4024614","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":278803441,"identity":"5643225a-6716-42ad-aa5c-b9938a4f5436","order_by":0,"name":"Eline Storvig","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA9UlEQVRIie2QsWrDMBBA7ziIF4FWiZB/kCl0KvRX0qVTlmwZigkY5CV0TqH0GzqFjgoHnfwRnjLHlIKHDr3UaTbFGQvVW/QQekg6gETiL5Lh8uQBFoedoYT6xPRJLUKDSb/8JID+gkQT+WYPRaHHdb79fBEh2hl8u4kmtsQqXwMb+zhzPNmIlKNrg/V9NHGMfqwgGFePpmw3IgxXDj1Hk9tD8gXFMXkW4ezjbOJIEhmCJBS27VKEVd6cS4zcYleO7dOKAsO7SKnmzZ2P/0VX1c50i0JrhWXbPYhk1WtofXxix+f1C6nfjelAcAK7S08mEonEv+Ib73FKvN9NrdIAAAAASUVORK5CYII=","orcid":"","institution":"Clinic of Medicine, Trondheim University Hospital","correspondingAuthor":true,"prefix":"","firstName":"Eline","middleName":"","lastName":"Storvig","suffix":""},{"id":278803442,"identity":"428b1994-112f-412d-a2bc-d0d1c1f48166","order_by":1,"name":"Ingunn Harstad","email":"","orcid":"","institution":"Norwegian University of Science and Technology (NTNU)","correspondingAuthor":false,"prefix":"","firstName":"Ingunn","middleName":"","lastName":"Harstad","suffix":""},{"id":278803443,"identity":"3c23ba9b-be4a-461f-97b0-69d4313f92b4","order_by":2,"name":"Birgitta Ehrnström","email":"","orcid":"","institution":"Clinic of Medicine, Trondheim University Hospital","correspondingAuthor":false,"prefix":"","firstName":"Birgitta","middleName":"","lastName":"Ehrnström","suffix":""},{"id":278803444,"identity":"24e265c8-5694-4af2-aa89-5bb8c2679fa6","order_by":3,"name":"Valentina C. Iversen","email":"","orcid":"","institution":"Norwegian University of Science and Technology (NTNU)","correspondingAuthor":false,"prefix":"","firstName":"Valentina","middleName":"C.","lastName":"Iversen","suffix":""}],"badges":[],"createdAt":"2024-03-07 13:15:27","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-4024614/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-4024614/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":52682133,"identity":"3b2666bc-8efd-48e6-87b0-36bb575b5b3b","added_by":"auto","created_at":"2024-03-14 12:50:13","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":699181,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4024614/v1/291aef4d-8af9-4e8a-a2dd-3e3e6e9e7bea.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Beyond the Diagnosis: Exploring the Psychosocial Impact of Drug-Resistant Tuberculosis on Patients in Norway","fulltext":[{"header":"Introduction","content":"\u003cp\u003eTuberculosis (TB) is an infectious disease caused by Mycobacterium tuberculosis, with pulmonary TB being the most common form and potentially contagious. However, TB can affect any organ in the body (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). The World Health Organization (WHO) defines drug-resistant tuberculosis (DR-TB) as a TB disease caused by a \u003cem\u003eMycobacterium tuberculosis\u003c/em\u003e complex strain resistant to any TB medicine. Multi-drug resistant tuberculosis (MDR-TB) is defined as resistance to at least rifampicin and isoniazid (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). Patients affected by DR-TB receive a complicated treatment, which often is associated with severe side effects, and they usually need longer hospital isolation if they are contagious. In 2022, WHO estimated 10.6\u0026nbsp;million new TB cases, 1.3\u0026nbsp;million deaths and 410,000 cases with rifampicin-resistant (RR-TB) strains (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). This study uses the term DR-TB to encompass both DR-TB and MDR-TB, specifying MDR-TB when necessary.\u003c/p\u003e \u003cp\u003eIn Norway with a population of 5.4\u0026nbsp;million, 174 people were diagnosed with TB in 2022, and of those ten had MDR-TB. Individuals who were born abroad were primarily affected, and 72 of them had stayed less than four years in Norway (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) The global TB situation and immigration significantly influence TB incidence and resistance patterns (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e). The Norwegian TB control program mandates tuberculosis screening for individuals from countries with high incidence of TB, who plan to stay in Norway for more than three months, as well as for all refugees and asylum seekers (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). Diagnosis and treatment are free of charge regardless of residence permit status (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThe Union's recommendations (2021) aim to address the psychosocial needs of TB patients and encourage their active participation in treatment. This initiative recognizes the importance of a holistic care aiming to create a supportive environment for patients, and the target groups are healthcare personnel, governments and TB support providers (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e). A systematic review and meta-analysis (2018) found high prevalence of mental disorders and common social stressors like stigma, self-isolation or lack of social support among DR-TB patients. This highlighted the necessity to integrate assessment of mental health, social protection and social support in TB guidelines and in clinical TB-treatment (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e). Other researchers reported that TB treatment can have long-term adverse effects on patients' health, even years after successful treatment (\u003cspan additionalcitationids=\"CR9\" citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). This underscores the need for continuous support and monitoring for TB survivors to address these persistent challenges (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). Providing person-centred care entails assessing of determining factors of patients\u0026rsquo; psychosocial health and is one of the pillars in the program of the Stop TB partnership. This approaches prioritize the individuals\u0026rsquo; unique needs and fostering a more effective and compassionate healthcare environment (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eAssessing patients\u0026rsquo; psychosocial health includes examination of stigma associated with tuberculosis (TB stigma). TB-stigma contributes to feelings of isolation, shame and fear of discrimination. A review in 2022 concluded that there is limited evidence on interventions aimed at reducing TB stigma (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e). The Stop TB Partnership has developed a framework to understand different types of stigma (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e). Self-stigma encompasses when TB patients accept negative stereotypes and behave in a manner that endorses them. Enacted or experienced stigma reflects the range of stigmatizing behaviours that are either directly experienced by individuals with TB or drive others to act through discrimination, rejection or isolation in various settings (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThis study aimed to understand the diverse experiences of patients diagnosed with resistant tuberculosis in Norway, particularly among immigrants and minorities. It emphasizes the challenges and implications, including the impact on psychosocial health throughout the disease trajectory, encompassing treatment, isolation and the recovery phase.\u003c/p\u003e"},{"header":"Method","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eStudy design and data collection\u003c/h2\u003e \u003cp\u003eThe qualitative research approach employed semi-structured interviews to delve into the experiences of DR-TB patients. Thematic analysis was used to examine the data, focusing on identifying patterns in participants' experiences, thoughts, expectations and attitudes. This method was chosen to facilitate a deep exploration of the nuanced and varied experiences of individuals affected by DR-TB (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThe study included individuals above 18 years who had been diagnosed with and completed treatment for DR-TB. Participants were sourced from TB registers at three university hospitals in Norway, covering the period from 2008 to 2020. Out of 31 individuals invited, 16 participated, comprising five men and 11 women aged between 19 to 71 years, with a mean age of 33.6. The majority were immigrants. Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e presents the descriptions of the participants. Interviews were conducted in two phases: ten in the autumn of 2019 and six in the autumn of 2021. Participants were provided with written details about the study's purpose, procedures, their rights and ethical considerations, in Norwegian or English, with adjustments made for language barriers. Interviews, conducted both in-person and via video call, explored their TB experiences and psychosocial health impacts. The interviewer was the first auditor (ES). All interviews were audio recorded and transcribed, and durations were ranging from 42 to 88 minutes.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eDescriptions of the participants\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"4\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMDR TB (%)\u003c/p\u003e \u003cp\u003e(n\u0026thinsp;=\u0026thinsp;8)\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eDR-TB (%) except MDR-TB (n\u0026thinsp;=\u0026thinsp;8)\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eTotal (%)\u003c/p\u003e \u003cp\u003e(n\u0026thinsp;=\u0026thinsp;16)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eGender\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3 (37.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e5 (31.25)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e6 (75)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e5 (62.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e11 (68.75)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eAge group (years) during treatment (mean 34 years)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e20\u0026ndash;39\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e8 (100)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e5 (62.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e13 (81.25)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e40\u0026ndash;59\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e2 (12.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026gt;\u0026thinsp;60\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (12.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1 (6.25)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eCivil status and children\u0026thinsp;\u0026lt;\u0026thinsp;18 years during treatment\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSingle\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (37.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3 (37.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e6 (37.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMarried/ partnership\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5 (62.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e5 (62.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e10 (62.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eChildren\u0026thinsp;\u0026lt;\u0026thinsp;18 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5 (62.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3 (37.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e8 (50)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eContinent of origin\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAfrica\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5 (62.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3 (37.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e8 (50)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAsia\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (12.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e3 (18.75)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEuropa\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (12.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e3 (18.75)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNorway\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e2 (12.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eEducation (years)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNo school/\u0026lt;6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (12.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1 (6.25)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e6\u0026ndash;10\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (12.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1 (6.25)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e11\u0026ndash;13\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e6 (75)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (12.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e7 (43.75)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026gt;\u0026thinsp;13\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e5 (62.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e7 (43.75)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eYears in Norway before treatment for immigrants (n\u0026thinsp;=\u0026thinsp;14)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026lt;\u0026thinsp;1 year\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e2 (14.3)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1\u0026ndash;4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (37.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3 (50)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e6 (42.9)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e5\u0026ndash;9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e3 (21.4)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026gt;\u0026thinsp;10\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (12.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e, \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e3 (21.4)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eClassifications of the diagnosis\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"4\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMDR TB (%)\u003c/p\u003e \u003cp\u003e(n\u0026thinsp;=\u0026thinsp;8)\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eDR-TB (%) except MDR-TB (n\u0026thinsp;=\u0026thinsp;8)\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eTotal (% of total)\u003c/p\u003e \u003cp\u003e(n\u0026thinsp;=\u0026thinsp;16)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eStart of treatment (year)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e2009\u0026ndash;2014\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4 (50)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e6 (37.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e2015\u0026ndash;2020\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4 (50)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e6 (75)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e10 (62.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eDuration of treatment (months)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e9\u0026ndash;12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (37.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e6 (75)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e9 (56.3)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e13\u0026ndash;18\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (12.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e3 (18.7)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026gt;\u0026thinsp;19\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4 (50)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e4 (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eOrgan affected\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePulmonal\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e6 (75)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e8 (50)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAbdomen\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (12.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e3 (18.75)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSkeleton/ skin\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e2 (12.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLymph node\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (12.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e3 (18.75)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"4\" nameend=\"c4\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eReported delayed DR-TB diagnosis\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (37.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e5 (62.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e8 (50)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eAnalysis of data\u003c/h2\u003e \u003cp\u003eAnalysis was conducted in accordance with six detailed phases in reflexive thematic analysis, described by Braun and Clarke (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e). 1) ES read the transcripts to become familiar with the data, and then re-read them to identify units of the text referring to challenges encountered by participants before, under and after being diagnosed with DR-TB. 2) Case by case ES coded units into analytic categories by using the software qualitative data analysis system, NVivo. NVivo facilitated the structured coding of the interview transcript (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e). ES and the last author (VI) then reviewed each category for coherence and data adequacy. 3) By comparing categories across the cases and referring to the full interviews, ES grouped the categories into initial themes by merging sub-categories. 4) As part of further development of themes, ES presented preliminary themes to all the authors, who reviewed and gave input on the themes. 5) ES and VI functioned as auditor to refining and defining the themes before 6) final writing up. The resulting themes were then reviewed again and discussed in the member group.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eEthics\u003c/h2\u003e \u003cp\u003e The ethical approval for the study was granted by Regional Committee for Medical and Health Research Ethics of Central Norway (REK), 2018/1813/REK mid. The privacy impact assessment (DPIA) has been performed. Participation was voluntary, and written informed consent was obtained. The participants were informed that confidentiality and anonymity were safeguarded. The information and consent form was prepared according to guidelines of REK.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eReflexivity\u003c/h2\u003e \u003cp\u003eThe authors' backgrounds in working with TB patients and immigrants shaped the study's design and analysis. These experiences contributed to a deep understanding of the subject matter and facilitated a nuanced approach to exploring the participants' experiences with DR-TB. The authors emphasized reflexivity in recognizing their own influence on the research. This reflective practice enriched the study's insights, grounding its conclusions in both empirical evidence and informed empathy (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e, \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e).\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eThe participants' narratives highlighted the complexities of navigating the TB diagnosis, treatment, side effects and life after treatment. Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e presents classifications of the disease. Immigrants faced additional challenges, including language barriers and adapting to new social environments. All participants reported one or more physical problems like dizziness, nausea, hearing loss, nephropathies and other serious conditions. MDR-treatment led to increased occurrence of side effects. Many participants had persistent problems when we conducted the interviews. Their physical problems further affected their mental health and social activity.\u003c/p\u003e \u003cp\u003eThe thematic analysis revealed three main themes and six subthemes (Table \u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e), showcasing the diverse experiences and challenges faced by DR-TB patients.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eThemes and subthemes\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"1\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTheme 1: Delayed diagnosis despite seeking health care\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDelayed diagnosis. I visited my general practitioner several times\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDiagnosis period. A tentative cancer diagnosis or waiting for resistance patterns\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eTheme 2: Hospital isolation and social isolation\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePsychosocial impact of hospital isolation. Break from the isolation life was important\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePsychosocial impact of social isolation, caused by treatment, stigma and/or lack of knowledge\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eTheme 3: The life after tuberculosis. \u0026ldquo;They just think that I am healthy\u0026rdquo;\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNothing feels as before\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eIf I cannot accept it, it will be my burden, and I try to move on\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eTheme 1: Delayed diagnosis despite seeking health care\u003c/h2\u003e \u003cp\u003eThe first theme highlighted the participants' struggle with delayed diagnosis despite proactive efforts to seek medical help. Many encountered problems in securing hospital referrals for further diagnosis, despite experiencing severe pain, serious symptoms of lung disease or abdominal issues. Some participants received cancer as a tentative diagnosis, and other participants had to await resistance pattern analysis before commencing treatment. This prolonged diagnostic journey was described as a very exhausting period by the participants.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec9\" class=\"Section2\"\u003e \u003ch2\u003eDelayed diagnosis. I visited my general practitioner several times\u003c/h2\u003e \u003cp\u003eOne participant evaluated diagnosis, treatment and isolation period like this:\u003c/p\u003e \u003cp\u003e \u003cem\u003eIf I want to summarize: general practitioner problem. Treatment went perfectly well for me. I have no complaints, because I knew what was going on. If it is unknown, there is a problem. [Participant 9 \u0026ndash; Man, p.11]\u003c/em\u003e \u003c/p\u003e \u003cp\u003eEight participants reported experiencing serious symptoms and made multiple attempts to contact the primary healthcare, but received minimal follow-up. Three participants described persistent coughing, fever, weight loss of up to ten kilos and experienced that their general practitioner (GP) did not take their symptoms seriously (Table\u0026nbsp;\u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e4\u003c/span\u003e, Q1). Two of them reported persistent damage to their lungs, described as cavities. Another participant, with TB in the cervical vertebrae which entailed pain, stiffness and minimal muscle function in one arm, contacted her GP many times asking for referral to hospital. She reported that she needed to pretend losing consciousness to secure admission to the hospital for further medical diagnostic (Table\u0026nbsp;\u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e4\u003c/span\u003e, Q2). Participants with abdominal TB found it challenging to pinpoint when the TB symptoms began, as they had experienced stomach issues many years before receiving diagnosis. One of them experienced that HP dismissed her abdominal problems as solely psychological. She thought that some physicians were unaware that TB could manifest in the abdomen (Table\u0026nbsp;\u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e4\u003c/span\u003e, Q3). Several participants expressed the belief that earlier intervention by their GPs might have prevented serious illness and mitigated the extensive sequelae of TB (Table\u0026nbsp;\u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e4\u003c/span\u003e, Q4).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003eDiagnosis period. A tentative cancer diagnosis or waiting for resistance patterns\u003c/h2\u003e \u003cp\u003eSome participants associated their TB with cancer and death, with some receiving a tentative cancer diagnosis. One participant, a mother of two small children, shared her feelings when healthcare personnel informed her about a potential cancer diagnosis. When later receiving information about TB instead of cancer, she felt more optimistic that she would manage the treatment well. This was before she experienced MDR-TB treatment. Another participant reported that healthcare personnel consistently concluded that it looked like cancer, and she obtained much information about a cancer diagnosis with high mortality (Table\u0026nbsp;\u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e4\u003c/span\u003e, Q5). Some participants were aware that they had TB but awaited resistance pattern analysis. Two of them were contagious, hospital isolated and experienced severe disease development. One of them underwent multiple changes in medication during her six-month hospital isolation period and also reported severe side effects of the medicines (Table\u0026nbsp;\u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e4\u003c/span\u003e, Q6).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab4\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 4\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eIllustrative quotes from Theme 1\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003eTheme 1: Delayed diagnosis despite seeking health care\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQuotations (Q) in text\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIllustrative quotes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eSubtheme: Delayed diagnosis. I visited my general practitioner several times\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e16 Woman (p29): \u0026ldquo;\u003c/em\u003eSo, I came again and told her, I am very sick, I am coughing a lot, I have a fever and stuff like that. So, she said, maybe you have a cold ... take cough syrup or something ... she did not help anything, she did not know ... I could not go to school or do anything.\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e10 Woman (p1 and p15)\u003c/em\u003e: \u0026ldquo;I could not sleep, did not eat, and I just sat at night\u0026hellip; it was just a pain \u0026hellip; doctor said: I do not see anything. So in the end my husband called an ambulance ... he said, she is unconscious.\u0026rdquo; \u0026ldquo;That is why I came to hospital.\u0026rdquo; \u0026ldquo;I went to him (GP) until I got a free pass \u0026hellip; If better knowledge had been given for him.\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e15 Woman (p2)\u003c/em\u003e: \u0026ldquo;I got worse and worse. I could not eat food ... she did not listen to me. So, then she ended up throwing me out of the doctor's office, because I thought she did a bad job ... I have never known that you can have TB elsewhere than in the lungs. And I don't think very many doctors know that.\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e12 Woman (p7)\u003c/em\u003e: \u0026ldquo;I should have been diagnosed much earlier because then I might have not gotten it in my back and been so bothered\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eSubtheme: Diagnosis period. A tentative cancer diagnosis or waiting for resistance patterns\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e15 Woman (p3)\u003c/em\u003e: They always concluded that it looked like cancer \u0026hellip; I was mentally quite out of it, because it was a disease, I read up and down about, when I received the cancer diagnosis. And it was a very little survival.\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e16 Woman (p2)\u003c/em\u003e: \"That time was very difficult for me. I had to wait a month for the medicine. A month, they said, no, that medicine have no effect, we are going to start another medicine.\u0026rdquo; \u0026ldquo;So, it became very difficult to walk with my legs, and tired and lethargic, I did not eat any food \u0026hellip; I was nauseous and vomiting all the time, had a fever and very bad. \u0026hellip; Fortunately in the end, I'm healthy.\"\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eTheme 2: Hospital isolation and social isolation\u003c/h2\u003e \u003cp\u003eSocial isolation stemmed from various factors, including the disease itself, medication side effects, stigma, and a lack of awareness within the community. Eight participants mentioned enduring prolonged periods of hospital isolation.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003ePsychosocial impact of hospital isolation. Break from the isolation life is important\u003c/h2\u003e \u003cp\u003eHospital isolation imposed an additional psychosocial burden on the participants. They understood the necessity of this approach and mentioned important justifications, such as protecting children, families, communities and healthcare personnel. Several participants emphasized that receiving regular updates from a trusted physician was of great importance to manage this period. One participant expressed a desire for more frequent information and stressed the specialists\u0026rsquo; responsibility to communicate their knowledge (Table\u0026nbsp;\u003cspan refid=\"Tab5\" class=\"InternalRef\"\u003e5\u003c/span\u003e, Q7).\u003c/p\u003e \u003cp\u003eSome participants experienced isolation far from their homes and seldom received visits from their families. One of them wanted to avoid these meetings and painful farewells with her young children. However, healthcare personnel supported her and said that she and her children needed these meetings (Table\u0026nbsp;\u003cspan refid=\"Tab5\" class=\"InternalRef\"\u003e5\u003c/span\u003e, Q8). Some participants appreciated that healthcare personnel recognized their sadness and spent time with them for conversation and social recreation. Everyone emphasized the importance of being able to leave their isolation rooms, spend time outdoors and meet their family and friends. However, some participants mentioned not being permitted to go outdoors for the first few weeks or even up to two months. Other participants reported no restrictions of getting outdoor and had access to a park directly from their isolation rooms. These participants also had the opportunity to meet other TB patients and peers in this park. One participant who had recently arrived in Norway, stated that access to fresh air protected her against depression (Table\u0026nbsp;\u003cspan refid=\"Tab5\" class=\"InternalRef\"\u003e5\u003c/span\u003e, Q9). Several participants highlighted the importance of internet access and staying connected with the outside world.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003ePsychosocial impact of social isolation, caused by treatment, stigma and lack of knowledge\u003c/h2\u003e \u003cp\u003eThe participants\u0026rsquo; activity were limited, and several of them reported side effects, which contributed to keeping them in their bed many hours after getting medicines. One participant told about nausea which contributed to social changes like stopping university education and minimal contact with friends. She said that TB and treatment might have been some sort of a traumatic experience. Some participants announced that they had depression during the treatment, but only a few were offered follow-up by psychological teams. One participant who was isolated in hospital for one month and reported social isolation afterwards, talked about mental problems and post-traumatic stress disorders after wars. He did not mention this to healthcare personnel and received no support for these problems during the TB treatment period. One participant needed to ask several times to meet a psychologist. It was important for her that a psychologist told her, that some of the TB-medicine could affect her mental health (Table\u0026nbsp;\u003cspan refid=\"Tab5\" class=\"InternalRef\"\u003e5\u003c/span\u003e, Q10).\u003c/p\u003e \u003cp\u003eSeveral participants reported social isolation caused by experienced or self-stigma, lack of public knowledge of TB and also their own fear of being contagious. When they experienced that people kept distances, they avoided further social contact (Table\u0026nbsp;\u003cspan refid=\"Tab5\" class=\"InternalRef\"\u003e5\u003c/span\u003e, Q11). Several participants did not expect others to understand their complicated situation, and found it challenging to explain about their DR-TB (Table\u0026nbsp;\u003cspan refid=\"Tab5\" class=\"InternalRef\"\u003e5\u003c/span\u003e, Q12). One participant said that she chose not to disclose her disease because she wanted to avoid appearing weak. Another participant had experienced racism in her native country and wanted to protect herself against racism in Norway. She asked herself questions such as \u0026ldquo;What do they think about us coming here with illness and bringing disease?\u0026rdquo; One participant with noncontagious abdominal TB opted not to tell anyone to prevent worrying his schoolmates. He had a tough time and did not manage to follow his study program during the disease. Two participants reported encountering stigma while visiting outpatient clinics and perceived that healthcare personnel lacked knowledge about TB (Table\u0026nbsp;\u003cspan refid=\"Tab5\" class=\"InternalRef\"\u003e5\u003c/span\u003e, Q13). One participant who returned home to his wife and two young children after four and a half months of hospital isolation, described the fear of still being contagious (Table\u0026nbsp;\u003cspan refid=\"Tab5\" class=\"InternalRef\"\u003e5\u003c/span\u003e, Q14). Several participants chose not to inform their families about their illness to spare them worries, despite the disease seriously affecting them (Table\u0026nbsp;\u003cspan refid=\"Tab5\" class=\"InternalRef\"\u003e5\u003c/span\u003e, Q15).\u003c/p\u003e \u003cp\u003e Several participants experienced that openness highlighted their needs, protected them against social isolation and supported them through the TB-period. One participant did not feel any shame, because TB is \u0026ldquo;airborn\u0026rdquo;, and it was nothing she had done. Some told that contact tracing in the municipality, made their contagious TB disease visible for their network. No participants complained about this procedure.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab5\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 5\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eIllustrative quotes from theme 2\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003eTheme 2: Hospital isolation and social isolation\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQuotations (Q) in text\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIllustrative quotes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eSubtheme: Psychosocial impact of hospital isolation. Break from the hospital isolation life is important\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e3 Man (p5)\u003c/em\u003e: \u0026ldquo;I think this is the work that any doctor in hospital always should do, when they got something ... to inform the patient \u0026hellip; He should focus on his seriousness, not only dictation, work and other stuff, because at that time they did not give me a clear answer.\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ8\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e16 Woman (p11)\u003c/em\u003e: \u0026ldquo;My daughter was two years old. She wanted to stay with me, she wanted to kiss me ... So that time was very hard for me \u0026hellip; I told the doctors, I don't want them to come ... However, no, they said, they need you.\"\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e4 Woman (p8 and p 10)\u003c/em\u003e: \"After three weeks, they said I could go out.\u0026rdquo; \u0026ldquo;I was looking forward going out ... I was very, very sad, every day, so I had to think of something that made me happy \u0026hellip; If I did not, I would get crazy.\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eSub-theme: Psychosocial impact of social isolation, caused by treatment, stigma and/or lack of knowledge\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ10\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e15 Woman (p6 and p9)\u003c/em\u003e: \u0026ldquo;I asked several times to see a psychologist, and finally I got to talk to a psychologist, who I did not think really understood me.\u0026rdquo; \u0026ldquo;I remember getting paranoia ... Anyone had told me about these side effects.\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ11\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e4 Woman (p8)\u003c/em\u003e: \u0026ldquo;They refused to eat at the same table with me ... I tried ... to meet others, so I just, keep it myself, I don't go out anymore, after that.\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e15 Woman (p9)\u003c/em\u003e: \u0026ldquo;You become very isolated. I wasn't social, I didn't talk to people \u0026hellip; You don't encounter understanding and people don't understand what you're going through, so it just becomes tiring to deal with people.\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ13\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e13 Woman (p9)\u003c/em\u003e: \u0026ldquo;The gynaecologist was not too happy that I came ... I realized that. I was angry \u0026hellip; the doctor, acted as if he had no good knowledge \u0026hellip; I felt badly treated.\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ14\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e6 Man (p11)\u003c/em\u003e: \u0026ldquo;There were a lot of children, and if the bacteria remains, I thought things like that \u0026hellip; You know it when you're cured, however, you're not cured, but infection-free, but anyway it's a bit like that.\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ15\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e3 Man (p6)\u003c/em\u003e: \u0026ldquo;The doctors, they asked me to tell them (the family in his native country), so they could go to diagnosis. \u0026hellip; I did not want to do that \u0026hellip; If I told them, especially my mum \u0026hellip; another sickness so ... but if I told them when I was in hospital, it would be hard for them.\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003eTheme 3: The life after tuberculosis. \u0026ldquo;They just think that I am healthy\u0026rdquo;\u003c/h2\u003e \u003cp\u003eAll participants reported that they had completed treatment, and nobody had experienced relapse after being cured in Norway. They described physical- and psychosocial impacts and a fear of relapsing.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eNothing feels as before\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eSeveral participants reported that the TB-period contributed to persistent problems and changes in their life. They talked about pain, weakness and hearing loss many years after completed treatment and had descriptions like never regaining strength and nothing feels as before (Table\u0026nbsp;\u003cspan refid=\"Tab6\" class=\"InternalRef\"\u003e6\u003c/span\u003e, Q16). One participants paused the school for four years due to pulmonary sequelae and breathing problems. Several participants said that it was troublesome to explain the lost years, and why they did not manage the normal educational- and job progresses. Some participants was still thinking about being contagious many years after completed treatment, and a grandfather talked about avoiding close contact with grandchildren. A father told that when his children had a cold, he still thought about his past MDR-TB contagious period (Table\u0026nbsp;\u003cspan refid=\"Tab6\" class=\"InternalRef\"\u003e6\u003c/span\u003e, Q17). Similarly, another participant remained preoccupied with her contagious period, which had contributed to a child becoming infected. Despite undergoing mandatory TB screening and receiving no restrictions working with children, she still felt guilty (Table\u0026nbsp;\u003cspan refid=\"Tab6\" class=\"InternalRef\"\u003e6\u003c/span\u003e, Q18). One participant experienced TB relapse ten years after being cured in his native country and thought that this could occur again (Table\u0026nbsp;\u003cspan refid=\"Tab6\" class=\"InternalRef\"\u003e6\u003c/span\u003e, Q19). Two other participants said they felt healthy shortly after stopping the medications and continuing their jobs and other activities.\u003c/p\u003e \u003cp\u003e \u003cb\u003eIf I cannot accept it, it will be my burden, and I try to move on\u003c/b\u003e \u003c/p\u003e \u003cp\u003eA participant described how she experienced to loose years of her life, when she was newly arrived in Norway and wanted to focus on family, education, job and friends.\u003c/p\u003e \u003cp\u003e \u003cem\u003eSometimes I still cry, because I feel like I lost some years of my life ... If I did not get the illness, perhaps I could study Norwegian earlier, perhaps I could have gotten a job earlier, perhaps I could have a network earlier ... So yes, it affected me, and my life. However, I could not turn back to the, I already have missed. We have to live, what is given for us \u0026hellip;, it scared me for life\u0026hellip; if I cannot accept it, it will be my burden, so I just try to move on. [Participant 4 \u0026ndash; Woman, p.16]\u003c/em\u003e \u003c/p\u003e \u003cp\u003eOne participant reflected on how TB made it clear to him that life could be gone very quickly, prompting a change in his perspective, and he started to take everything from life. Another participant had learned that she could follow her goal to complete her education at the university despite hearing loss and other complicated events in her life. She wondered what her life might have been like if she did not experience these challenges. She was happy that she was healthy, but also sad about her experiences. She experienced problems accepting acquired hearing loss and still wondered why they had given her medicines, which contributed to this outcome (Table\u0026nbsp;\u003cspan refid=\"Tab6\" class=\"InternalRef\"\u003e6\u003c/span\u003e, Q20). One participant said that she did not focus on the lost years and wanted to look forward. The most important thing was to cure the TB, follow physicians\u0026rsquo; advices and be there for her family and children. Another participant described that she was struggling for several years to return to her job and normal life (Table\u0026nbsp;\u003cspan refid=\"Tab6\" class=\"InternalRef\"\u003e6\u003c/span\u003e, Q21). She compared TB and cancer, if she had had cancer, there would have been many available support options. She experienced that when she had completed treatment for MDR-TB, healthcare personnel informed her that she was healthy, and that everything was fine. She claimed that it was difficult to receive understanding and support to manage life after completing TB treatment (Table\u0026nbsp;\u003cspan refid=\"Tab6\" class=\"InternalRef\"\u003e6\u003c/span\u003e, Q22).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab6\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 6\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eIllustrative quotes from theme 3\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003eTheme 3: The life after tuberculosis. \u0026ldquo;They just think that I am healthy\u0026rdquo;\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQuotations (Q) in text\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIllustrative quotes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eSubtheme: \u0026ldquo;Nothing feels as before\u0026rdquo;\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ16\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e1 Woman (p12)\u003c/em\u003e: \u0026ldquo;In the left arm and leg ... can't lift with it ... the foot, still hurts a little, but these are worse sometimes and get better sometimes. Nothing feels as before, yeah.\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ17\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e6 Man (p13)\u003c/em\u003e: \u0026ldquo;If the children have a cold and such, and then you start thinking \u0026hellip; this feeling will be in my whole life.\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ18\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e13 Woman (p3)\u003c/em\u003e: \u0026ldquo;It is still uncomfortable, that I know that children is infected.\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ19\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e3 Man (p7)\u003c/em\u003e: \"Why did it came back after all these ten years? Now, still I am afraid, if it could come back after some years, or is it already destroyed in my body.\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003e\u003cb\u003eSubtheme: If I cannot accept it, it will be my burden, and I try to move on\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ20\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e8 woman (p 2 and p19)\u003c/em\u003e: \u0026ldquo;I wonder why I got injuries for the rest of my life in a country that is so modern. I wonder about that all the time.\" \u0026ldquo;I wonder ... how my life could be now ... and the years when I was ill, meant that I could not learn anything, it is almost three years. I think I could have finished university by now ... I am glad that I am healthy. I am also sad that I experienced that.\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ21\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e15 Woman (p8)\u003c/em\u003e: \u0026ldquo;It makes me a little sad that they do not take the patients seriously, just listen to them a little more. And not just wrapping everything up, that it's just mental.\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQ22\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003e15 Woman (p7 and p9)\u003c/em\u003e: \u0026ldquo;Who guides you through the build-up period?\u0026rdquo; \u0026ldquo;With cancer and other types that are quite well known, you get a lot of offers, don't you, and understanding. However, when it comes to TB, they just think you are healthy. That everything is good.\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study aimed to delve into the experiences and perceptions of patients with DR-TB and shed light on the psychological and social dynamics they encountered. It sought to understand how patients perceived their illness, interacted with the healthcare system and managed relationships with others throughout their diagnosis, treatment and recovery processes (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e, \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e). The study revealed that DR-TB significantly impacted individuals across different backgrounds in Norway, including both immigrants and natives. The severity of the disease, its side effects, isolation and stigma contributed to the hardships faced by patients. Notably, eight participants experienced delayed diagnoses due to inadequate follow-up from the healthcare service that affected them during and after treatment.\u003c/p\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003eInformation and communication\u003c/h2\u003e \u003cp\u003e The participants\u0026rsquo; met challenges related to receiving adequate information and education regarding their complex situations. Language barriers might have had an impact and potentially also limited their understanding of their rights and opportunities. These findings underscore the critical needs for person-centred and holistic care approaches (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e, \u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e). Key elements of person-centred care include health education, improved communications, respect and psychosocial support. Such approaches prioritize addressing individual's specific health needs and personal preferences, empowering patients to gain a better understanding of their experiences (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e, \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e). The utilization of interpreters is emphasized as crucial support for achieving mutual understanding between healthcare personnel and patients. In Norway, the regulation established in 2021 mandates public services' responsibility to utilize interpreters, aiming to safeguard patients' rights in this domain. This regulation ensures that individuals who do not speak the local language, have access to quality healthcare by facilitating effective communication through professional interpreting services (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e). Mutual understanding, knowledge and effective communication are crucial factors that can significantly enhance the TB treatment process. These elements contribute to a more informed and engaged patient experience, enable better adherence to treatment protocols, reduce misunderstandings and foster a supportive healthcare environment that aligns with patients' needs and circumstances.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003eDelayed diagnosis\u003c/h2\u003e \u003cp\u003eMany participants, whether dealing with pulmonary or extrapulmonary DR-TB, experienced that primary healthcare personnel did not recognize their serious TB symptoms, resulting in delayed follow-up and diagnosis. Early recognition and addressing of symptoms is a cornerstone of the WHO's strategy to combat TB, emphasizing the critical need for heightened awareness and prompt action in the healthcare to improve outcomes (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e). Healthcare personnel might lack specific knowledge regarding TB and the unique challenges faced by immigrants with serious illnesses. A study from Norway in 2018 highlighted that GPs seldom had consultations with TB patients, indicating a gap in TB-specific knowledge within primary healthcare. This gap underscores the need for enhanced training and resources to better manage the TB diagnostic (\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e). Healthcare personnel need to consider the specific situations of immigrants to fully understand and address their challenges, and diverse publications offer valuable insights and recommendations. These findings emphasize the importance of culturally sensitive care, accessibility, awareness and the need to effectively support immigrants dealing with TB (\u003cspan additionalcitationids=\"CR26\" citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e). An Italian study (2018) identified several factors contributing to delays in TB diagnosis, including limited knowledge about TB, financial burdens related to transportation to healthcare facilities, geographical distance to these centres, prior unspecific treatments and significant weight loss. These findings underscore the complex interplay between socioeconomic factors, healthcare accessibility and awareness (\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e). Our study revealed that delayed TB diagnosis was frequently attributed to a lack of knowledge among both patients and healthcare personnel. Although the exact factors leading to late diagnosis remain unclear, this study identified inadequate follow-up as a contributing factor. Norway's provision of free transportation, screening and control of TB (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e) is a significant measure to support timely diagnosis and treatment.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003eMental health and isolation\u003c/h2\u003e \u003cp\u003eThe participants described facing a challenging period, with many reporting feelings of depression. However, they mentioned a notable lack of psychological support during their treatment, particularly in hospital settings. Our findings on depression align with global data indicating a high prevalence of comorbid depression among TB patients (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e). A publication from 2017 highlighted that clinical depression in TB patients can be triggered by the disease itself, associated stigma and side effects from TB medications. Additionally, TB can exacerbate existing social vulnerabilities, pointing to the complexity between the disease and the broader socioeconomic factors affecting patients (\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e). This underscores the importance of monitoring the mental health of patients undergoing DR-TB treatment and highlights the need for integrated care approaches that address both physical and psychological aspects (\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e, \u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e). The inclusion of psychosocial approaches in the Norwegian TB guidelines (2023) signifies a recognition of the importance of addressing the mental and social aspects of TB care (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eStigma remains one of the challenges in TB control, and addressing stigma is crucial for improving patient outcomes and the effectiveness of public health strategies (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e). Participants in our study reported both experienced and self-stigma. They experienced stigma both in their network and in hospital. In addition, a sense of unease gripped some participants who knew that they had been contagious, contributing to feelings of shame or guilt. Few participants reported targeted healthcare measures to maintain mental health or to protect against stigma. Healthcare personnel and collaborators must support patients in transforming self-stigma to self-worth. The Stop TB Partnership points out that reducing TB stigma may facilitate early diagnosis and full recovery (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e). A systematic mapping review (2016) considered TB stigma in low-incidence countries and found limited studies compared to the extensive evidence in the HIV field (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). This indicates a need for more studies on TB stigma as a social determinant of health to understand its impact and to develop effective interventions.\u003c/p\u003e \u003cp\u003eThe long periods of hospital isolation experienced by participants raise concerns about impact on their mental and social well-being. With the introduction of new and improved medicines, the necessity and duration of such isolation should be re-evaluated (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). The WHO's Ethics Guidance for the Implementation of the End TB Strategy advises against isolating TB patients without first exploring all options to ensure treatment adherence and only under specific conditions (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e). Participants valued measures that improved their management during isolation, including access to fresh air and visits from family. However, they expressed a need for better communication with healthcare personnel regarding their condition and treatment plans. Establishing a trust-based relationship through effective interaction and clear communication is crucial for patient support and management during the TB treatment process (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e). The experiences of getting outdoors from isolation varied among participants, with direct outdoor access from isolation rooms being a significant factor in their well-being. Healthcare personnel must acknowledge and address the psychosocial needs of TB patients during isolation and upon discharge, ensuring clear communication about their situation and the care plan to mitigate further psychosocial difficulties.\u003c/p\u003e \u003cp\u003eThe WHO\u0026rsquo;s recommended all-oral short regime from 2022 has great significance for patients with MDR-TB (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e). A Publication from 2019 noted that although new tools and treatment regimens have been introduced, advances must also be made in providing high quality, person-centred care to protect against morbidity and stigma associated with tuberculosis (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e). However, with shorter treatment, patients may still experience side effects from medications, need isolation when they are contagious and associate TB with a serious disease and stigma. Those treated prior to the introduction of shorter regimes, carry their own experiences and consequences, and these highlight the ongoing need for supportive care and attention to individual experiences.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec19\" class=\"Section2\"\u003e \u003ch2\u003eChallenges after completed treatment\u003c/h2\u003e \u003cp\u003eSeveral participants struggled to regain their physical and psychosocial health after completing TB treatment. One participant reported a lack of support after completed treatment, which contrasts with the rehabilitation services often available to cancer patients. A systematic review (2021) quantified the prevalence and types of permanent TB related disabilities and reported that the most common disability was mental disorders (\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e). A study from 2020 evaluated permanent respiratory TB sequelae in Mexico and Italy and pointed to the necessity of pulmonary rehabilitation (\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e). Long-term health impacts emphasize the importance of monitoring comorbidities such as permanent disabilities and mental disorders, underscore a broader need for comprehensive post TB care and ensure a holistic approach to patient recovery and well-being (\u003cspan additionalcitationids=\"CR33\" citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e). Healthcare personnel must guide patients in managing health challenges and recommend further follow-up when necessary. Effective collaboration among DR-TB patients, hospital staff, primary healthcare and municipal entities is essential for facilitating a smoother transition to a healthy life and ensuring comprehensive support and care continuity.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec20\" class=\"Section2\"\u003e \u003ch2\u003eStrength and limitations\u003c/h2\u003e \u003cp\u003eThe study acknowledges limitations due to the lack of participation from some invited individuals, particularly those with language barriers and those who declined after consulting with family members. Although the participants managed English and Norwegian well, many of them did not use their native languages during the interviews, potentially affecting their expressions and nuances. Despite these challenges, the inclusion of 16 diverse participants is considered a strength, as it provided a rich variety of narratives that contributed to valuable insights into the research question. This diversity ensured that the study captured a broad spectrum of experiences and perspectives on living with and treating TB, enhancing its informational power and relevance.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis study highlights the enduring impact of DR-TB on patients, emphasizing the importance of early diagnosis, the challenges within healthcare systems and the necessity of psychosocial support. Despite variations in their experiences, participants universally faced serious disease implications, including stigma and isolation. Expressions of gratitude towards family, healthcare services and the government were common, alongside reflections for missed early intervention opportunities. This study underscores the need for improved healthcare awareness, communication and follow-up after completed treatment. We recommend further studies in low endemic countries to evaluate the recommendations for psychosocial follow-up after introducing short oral treatment for resistant TB.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate:\u003c/strong\u003e The ethical approval for this study was granted by the Norwegian Regional Ethics Committee (REK)\u0026nbsp;2018/1813/REK, ensuring adherence to ethical standards. A privacy impact assessment (DPIA) was also conducted. Participation was voluntary, with written informed consent obtained from all participants. Confidentiality and anonymity were safeguarded, aligning with REK guidelines to protect participants\u0026apos; privacy and rights throughout the research process.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication:\u003c/strong\u003e We informed all participants about planned publication and obtained written informed consent.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials:\u003c/strong\u003e The transcribed narratives of the participants are not publicly available due the participants\u0026rsquo; confidentiality and anonymity. Fragments of the data material might be available on reasonable request to the corresponding author. The dataset is available 5 years after the end of the project in accordance with the REK\u0026apos;s ethical approval.\u003c/p\u003e\n\u003cp\u003eCompeting interests: Not applicable\u003c/p\u003e\n\u003cp\u003eFunding: Not applicable\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEconomic support:\u0026nbsp;\u003c/strong\u003eThe study has received financial support from the\u0026nbsp;Clinic of Medicine,\u0026nbsp;Trondheim University Hospital and The Joint Research Committee between St. Olavs hospital and the Faculty of Medicine and Health Sciences, NTNU (FFU).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026apos; contributions:\u0026nbsp;\u003c/strong\u003eES wrote the main manuscript text. All authors reviewed the manuscript and their feedback were included. All authors have contributed to analysis, developing of themes and writing up. ES and VI controlled the research process and informed IH and BE about this. All authors have assessed the manuscript before submitting.\u003c/p\u003e\n\u003cp\u003eAcknowledgements: Not applicable\u003c/p\u003e\n\u003cp\u003eAuthors\u0026apos; information (optional): Not applicable\u003c/p\u003e\n\u003cp\u003eThe authors confirm that the manuscript earlier has not been published or submitted. The first author contributed a short oral presentation of the study on the Union conference in Paris 2023.\u0026nbsp;\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eWorld Health Organization. Global tuberculosis report 2023 Geneva: World Health Organization,; 2023 [updated 2024.02.07. 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Int J Tuberc Lung Dis. 2019;23(12):1253\u0026ndash;6.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-public-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"pubh","sideBox":"Learn more about [BMC Public Health](http://bmcpublichealth.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/pubh/default.aspx","title":"BMC Public Health","twitterHandle":"@BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"drug-resistant tuberculosis, psychosocial health, patients’ experiences, low-endemic countries, qualitative research","lastPublishedDoi":"10.21203/rs.3.rs-4024614/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4024614/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003eBackground: This study aims to explore the varied experiences of patients with resistant tuberculosis in Norway, particularly among immigrants. The study emphasizes challenges and implications of being diagnosed with resistant tuberculosis, including the impact of psychosocial health during the disease, treatment, isolation and recovery phases.\u003c/p\u003e\n\u003cp\u003eNorway is a low endemic country of tuberculosis. Most patients are immigrants and some have recently arrived in the country. Patients undergoing treatment for drug-resistant tuberculosis endure prolonged and demanding treatment that could affects their psychosocial health.\u003c/p\u003e\n\u003cp\u003eMethods: This qualitative research approach conducted 16 in-depth interviews with individuals diagnosed and completed treatment for resistant tuberculosis, aged 18 and above, mean age of 33.6. The majority of the participants were immigrants, and eight of them had resided in Norway for less than four years before diagnosis. Data analysis followed the six-phase reflexive thematic analysis framework outlined by Braun and Clarke\u003c/p\u003e\n\u003cp\u003eResults: The narratives of the participants highlighted the complexities of navigating the TB diagnosis, treatment, side effects and life after treatment. Immigrants encountered additional challenges, including language barriers and adapting to new social environments. All participants reported experiencing physical health issues which additionally affected their mental health and social activity. Many participants had persistent problems at the time of the interviews. Several participants expressed social isolation, and those with confirmed contagious pulmonary tuberculosis experienced hospital isolation up to six months. Three main themes emerged from the analysis: Delayed diagnosis despite seeking health care; Hospital isolation and social isolation; The life after tuberculosis. “They just think that I am healthy”.\u003c/p\u003e\n\u003cp\u003eConclusion: This study highlights the enduring impact of DR-TB on patients, the significance of timely diagnosis, the challenges within healthcare services and the importance of psychosocial support. The participants universally faced serious implications of the disease, including stigma and isolation, alongside reflections on missed early intervention opportunities. The need for enhanced healthcare awareness, improved communication and post-treatment follow-up is underscored. Further research conducted in low endemic countries should evaluate the recommendations on psychosocial follow-up after introducing short-oral treatment.\u003c/p\u003e","manuscriptTitle":"Beyond the Diagnosis: Exploring the Psychosocial Impact of Drug-Resistant Tuberculosis on Patients in Norway","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-03-14 12:50:04","doi":"10.21203/rs.3.rs-4024614/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2024-03-15T12:31:42+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-03-12T13:03:39+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-03-12T13:03:39+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Public Health","date":"2024-03-07T13:07:52+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-public-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"pubh","sideBox":"Learn more about [BMC Public Health](http://bmcpublichealth.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/pubh/default.aspx","title":"BMC Public Health","twitterHandle":"@BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"591d6874-de14-4cc0-a29c-7d7a8be6d59e","owner":[],"postedDate":"March 14th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2024-07-02T11:11:19+00:00","versionOfRecord":[],"versionCreatedAt":"2024-03-14 12:50:04","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-4024614","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-4024614","identity":"rs-4024614","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}