Dealing with life-limiting illnesses, death, dying and grief, is uncharted territory for medical graduates. It is a field that is heavily influenced by cultural, religio-spiritual and social factors. This adds complexity to palliative and end-of-life-care, which challenges newly qualified physicians and requires the formation of appropriate knowledge, skills, and attitudes in junior doctors. This study aimed to obtain insight into the perspectives, perceived self-efficacy, and preparedness of newly qualified Nigerian physicians in practising palliative care and identify potential variables influencing them.The study was a cross-sectional, multi-centre survey of newly qualified Nigerian physicians, using semi-structured, in-depth qualitative interviews. The data were analysed by applying content-structuring qualitative content analysis.Forty semi-structured interviews were conducted with medical house officers at two tertiary institutions in Nigeria. The perceived self-efficacy and preparedness of newly qualified Nigerian physicians in practising palliative care were reported to be higher in areas of family involvement, and pain and symptom management than in areas of breaking bad news, prognosis, and diagnosing dying. Major influences on the young physicians’ perceived self-efficacy and preparedness in practising palliative care were socio-economic circumstances of a resource-limited setting and cultural-religious considerations. In addition, the perceived impact of palliative care education and experience was documented.This study offers valuable insights into the perceived self-efficacy and preparedness of newly qualified physicians and reveals the influence of socio-cultural and socio-economic variables in Nigeria. Evidence of the social, cultural, and religio-spiritual dimensions of palliative care is indispensable for culturally sensitive care. These results could aid in the development of appropriate knowledge, skills, and attitudes in newly qualified physicians through culturally and contextually appropriate palliative care training measures. The results may be applicable to other sub-Saharan African settings and may be used to improve future palliative care education, training, and practice.The online version contains supplementary material available at 10.1186/s12904-022-01028-w. Palliative care (PC) is a growing field of medical practice worldwide. However, it is still comparably new to national health systems, especially in the global south . The pubNigeria is Africa’s most populous nation and offers enormous ethnic heterogeneity. Available research on PC in Nigeria reveals several barriers to PC provision. Among them are an inadequate number of PC specialists, limited access to medication, missing national and local guidelines, inadequate collaborative care, and a lack of sensitisation and knowledge of benefits, organisation and scope of PC among the general public and healthcare professionals –9. In adPreliminary studies have shown that PC awareness, knowledge, education, and training are still mostly suboptimal among Nigerian healthcare professionals –19. ThisAdvocacy for PC development in Nigeria commenced in the 1990s, and only a few health facilities offer evidence-based comprehensive PC services. The University of Ibadan for example only introduced PC into the curriculum of the College of Medicine in 2010, being the first to do so in the country. Curricular changes were aimed at arming graduates with the knowledge, skills and attitudes necessary to meet the specific needs of their community . HoweverFurther objectives were to gain insight into the variables influencing perceived self-efficacy and preparedness, especially with regard to attitudes towards death and dying and communication in PC. Dealing with death, dying, and grief is heavily influenced by society and culture . ConsequOffering palliative and end-of-life care is a complex and challenging task for young physicians. It is a field that is heavily influenced by cultural, religio-spiritual, and social factors. This study aimed to address the pressing need for research in this area. The results could aid in the development of appropriate knowledge, skills, and attitudes in NQPs through culturally and contextually appropriate PC training measures.The study was conducted as a cross-sectional, multicentre survey of NQPs in Nigeria, using semi-structured, in-depth qualitative interviews.Participants were recruited from two tertiary institutions in Nigeria: the University College Hospital (UCH), Ibadan and the University of Nigeria Teaching Hospital (UNTH), Enugu. Both institutions are located geographically along the southern axis of Nigeria. Ibadan, in the south-western geopolitical zone, is predominantly populated by Yoruba people. Christianity and Islam are the most common religions in the region. Enugu, located in the south-eastern geopolitical zone, is predominantly populated by Igbos, who identify mostly as Christians. However, many Igbo and Yoruba continue to practice their traditional religions alongside Islam and Christianity. The study sites were purposively selected, as both institutions are leading university teaching hospitals in the country with broad objectives of medical services, training and research. They are the largest tertiary hospitals in their respective regions and offer differentiated cancer care services. The two hospitals are of the few institutions in Nigeria with functioning PC units.Ethical approval for the study was obtained from the UCH Ethics Committee (NHREC/05/01/2008a), UNTH Ethics and Research Committee (NHREC/05/01/2008B-FWA00002458-1RB00002323) and Ethics Commission of the Medical Faculty of the Rheinisch-Westfaelische Technische Hochschule (RWTH) Aachen (EK 116/16). The participants were provided with verbal and written information about the study, and they provided written informed consent before the interviews were conducted. Participants’ responses were kept confidential. They were assigned a random numerical code and their actual identity was revealed at no time. Participation in this study was voluntary; refusal to participate did not incur any disadvantages for the participants.Data collection on-site was performed by the first author of this article, NO, a German male of Nigerian descent. At the time of data collection, he was a 26-year-old doctoral candidate and medical student. NO has lived in Nigeria for several years at different stages of his life, both among the Igbo and Yoruba people. Therefore, he spent considerable time in the field of research prior to conducting the study, which made him familiar with regional cultural and religio-spiritual customs and the local vernacular. Between October and December 2016, NO spent a total of three months at both study sites. He followed and observed team members of the PC units of the respective study sites during ward rounds, daily team meetings, outpatient visits, and other activities. This served as a familiarisation with the research field. Field notes were taken, which served as a contextualisation for the interviews and analysis. NO’s interest in the research topic stemmed from his personal bonds with Nigeria, as well as an academic interest in PC in general and global PC education in particular. Prior to the study, there was no relationship between study participants and interviewer. However, the interviewer verbally introduced himself, his goals, and interest in the research topic to the participants before conducting the interviews. As a foreign researcher, his Nigerian background served as an icebreaker in many cases. It offered a common denominator between participants and interviewer, provided off-the-record talking points at the beginning and end of many interviews, and was the basis for an open and trustful interview atmosphere. The study was conducted in association with TO and OS, two well-established PC pioneers in Nigeria, who assisted the first author of this article to identify and contact potential study participants on-site. FE and PP conceptually and methodologically supported this study.The sample size for the interviews was set at twenty interviews per study site. The sample size was chosen arbitrarily, applying the purposive and snowball sampling methods. Data saturation was not set as the recruitment endpoint. However, the sample size, corresponded to preliminary studies using a similar design , 33. TheThe participants were either directly contacted by NO face-to-face on site or, in some cases, recruited through word-of-mouth publicity by their colleagues who had already participated in an interview. In the Nigerian healthcare system, first-year medical doctors rotate through the departments of surgery, paediatrics, gynaecology, and internal medicine. It was aimed to recruit a more or less even number of participants from each department. The interviewer attended different departmental meetings where he introduced himself, the study objectives, and the quest for participants. Participants who verbally agreed to participate in the study were followed up via phone calls or text messages to arrange an interview date. In some cases, the agreed-upon dates were postponed several times by the participants and multiple follow-up phone calls or text messages were necessary before the interview was held. In a few cases participation was eventually denied. Reasons stated for non-participation or delay in participation were time restrictions and the busy work-day schedule of the clinicians.A guide  or in a few cases in the private accommodations of the participants. In most cases, it was possible to establish a trustful, private and quiet setting, although not in all cases, as sometimes non-participants  were in the same room during the interview or parts of it. A disturbing factor in some of the interview situations was the fact that some participants were interviewed during their working hours in the hospital and therefore seemed eager to get back to work. In a few cases, other confounders disrupted the interview . Confounders were avoided as much as possible, and if the interviewer deemed the interview setting too disruptive, it was changed. The interviews were recorded using a digital voice recorder and later fully transcribed. The interviews were conducted in English. As English is the official language in Nigeria, the participants, exclusively medical doctors with university education, were all fluent in English. The interviewer was a proficient English speaker. Field notes were taken before, during and after interviews. These were reflective in nature and served as contextual information for the analysis and interpretation. Writing reflective notes or “memos” is integral to the research process . Detailef5transkript  So, you see the patient in pain. They call you, ‘doctor what can I do?’. The drugs they can afford, is not really handling their pain as much and you are limited. So, over here we know what we can do but we are constrained with what patients can afford. And sometimes some of the services may not be available. Readily available. So, that's the limitations we have. So, if this were handled, it's easier for us to, the patient is in pain, you know what to do, you can do that right away.” – S2I, 36Additionally, the resource-limited setting may cause a conflict of values in NQPs, as they know the right thing to do, but impeded access to healthcare means makes it almost impossible to do so.“Sometimes, sometimes, we may not have the right drugs. Or even the right drugs, the patients may not afford it. That is a fact. The patient may not afford it. The ones that can relieve the symptoms, the patient may not afford it. That’s the challenges we have here. So, what we do is, we work with what is available.” – M2E, 55Drug availability and affordability are important issues that are associated with resource limitations. The limited availability and affordability of drugs and other necessary services in PC may directly affect NQPs’ perceived self-efficacy and preparedness in practising PC.“Some families don’t have money to feed, so what is to waste that money on that PC for that patient that is dying in two weeks’ time. Just keep the money and pay for your children’s school fees.” – P6E, 116“Most people don’t really care about it, uhm, because of financial constraints. When you know that/ it’s, in fact, they see it as/ they see it like a waste. When you know that the patient will finally die, so what’s the essence of spending money on medicines and all that, when you know that those things will not finally get the person back to good health. So, it’s better you spend your money on something that will yield you better profit. You have hope of regaining your, uh, expenditure, your expenses. So, that’s the major problem we have here in Nigeria over PC.” –P7E, 18A lack of health insurance was repeatedly raised. This leads to patients’ dependency on private donors and relatives who may not have the appropriate knowledge and awareness of the benefits of PC.waste” by relatives may negatively affect NQPs perceived self-efficacy and preparedness in practising PC. Additionally, the problem of late presentation by patients came up frequently, influencing participants perceived self-efficacy and preparedness.“People say, ‘okay, maybe because of mismanagement of the doctors that’s why the patient die.’ No. Patient coming dead. Go to our emergency, patient comes in dead, patient comes in bad. So, there is really nothing you can do.” – P1I, 114The reported observation of PC being perceived as a ““The enlightened ones will always try to find out. They will like to understand the details […] So, but if you deal with, uhm, the ones that are not so enlightened, most times they are not really interested. […] And most unfortunately, most of our patients are not enlightened. And even when you’re trying to tell them, they’re not really keen in taking what you’re saying. They are not really keen. Their emphasis is usually on money, money, money, money, money.” – M2E, 67Another recurring theme in many interviews at both study sites was a low educational background among many patients which participants equated with a low level of health literacy and a lack of awareness of PC benefits. The late presentation of cancer patients in the advanced stages of the disease, even though most likely of multifactorial genesis, can be linked to low health literacy among many patients and their families. With regard to the greater topic of communication in PC, the educational background of patients emerged repeatedly and was discussed as a variable influencing NQPs’ perceived self-efficacy in practising PC.Other relevant identified frame conditions for NQPs’ perceived self-efficacy and preparedness in practising PC included, a hierarchical system within Nigerian healthcare institutions, in which NQPs found themselves at the lower end, which was associated with limited perceived competence and responsibility. Furthermore, the lack of human resources was identified as a frame condition possibly influencing NQPs’ perceived self-efficacy and preparedness in practising PC. Other challenges associated with PC in Nigeria included a general increase in the incidences of malignancies.experiences should be favoured”  over classroom teaching and that it was ultimately the government’s responsibility to fund PC in Nigeria adequately. They opined that, nonetheless, the present Nigerian PC specialists should complement the government and take responsibility for expanding their area of specialty. The participants’ answers regarding their hopes for the future of PC in Nigeria are summarised in Table The overwhelming majority of respondents opined that more training on PC for medical professionals was needed. They stated, however, that “Regarding support systems for physicians who experience emotionally challenging patient care, participants stated that the most common source of support was an informal one that was expected from senior colleagues. There were no formal structures for personal support for healthcare professionals at either study site, although the need for such support was recognised by many participants.In summary, variables to NQPs’ perceived self-efficacy and preparedness in practising PC which were identified on a systemic level as frame conditions for PC in Nigeria, were dominated by the frameworks of a resource-poor healthcare system and the challenges of an emerging economy. These, along with poor health literacy, lack of awareness regarding PC and cultural influences lead to a lack of consideration given to PC and insufficient organisational structures. These factors may reduce NQPs’ perceived self-efficacy and preparedness in practising PC. More training opportunities, especially active learning opportunities, intensified governmental funding, and increased awareness of the benefits of PC among the Nigerian public were areas for potential improvements that participants pointed to.Variables affecting NQPs’ perceived self-efficacy and preparedness in practising PC examined as variables on the personal level were factors such as the university visited, months of work experience, current postings, and potential extracurricular work experiences. Furthermore, they included experienced PC training and clinical or personal exposure to PC. This group of variables also included the participants’ personal understanding of PC, their role concepts as medical doctors, and their personal attitudes towards death, dying and end-of-life care. Additionally, NQPs’ personal coping strategies with morally and emotionally distressing patient care were analysed for a potential impact on their perceived self-efficacy and preparedness in practising PC.Professional Development as well as prior Education and Experiences in PC as some of the variables on the personal level relevant for NQPs’ perceived self-efficacy and preparedness in practising PC. In this context, extracurricular work experiences were mentioned by some respondents as a variable, directly linked to an increase in “confidence in discussing with patients” .We examined “Well, definitely. Because as a medical student, I don’t think I was ready for the idea that, uhm, part of the training would be accepting that there is nothing you can do for some patients. So, during those courses, during that orientation, you know, during that short rotation through […] that unit/ during that short rotation through that unit, I have to say that it gave me some exposure. You know, and it helped me accept, you know, that you/ to be a good doctor, you need a level of, uh, equanimity, I think is the word. Whereby, uhm, you just have to know when there is nothing you can do for a patient and then instead just do everything you can to make the patient happy.” – M1I, 26“Uh, it wasn’t elaborate, uh, it wasn’t, uh, extensive. It was […] like sketchy skeletal lesson. So, […] for me as a person, I didn’t gain so much out of the lecture. […] No, it didn’t prepare me well. If I have opportunity to learn more, I will learn.” – G3E, 34-36While most participants reported that they had some sort of PC training and/or exposure to PC in university, even if not formal or extensive, the extent of this exposure and the evaluation of its impact on their clinical practice differed significantly among the interviewees.No, I’m not fully prepared to care for dying patients. No, I’m not.” – S5E. 48.““And then I also remember that, uhm, well, like I said, we didn’t have a proper rotation. Even when we were starting medical internship, we had to do some orientation, where we had to go to the PC unit and ask what they do. We had to see the place. And we were taught how to send consults to them. So basically, I think we were given an idea of what it is, an idea of why patients need PC and a very good idea, I think it’s the most important part, when to call PC team. If you, yourself, cannot implement PC, at the very least, you should know when to call them. Yes.” – M1I, 24Some remembered multiple specific PC lectures and practical PC exposure, while others stated that they did not have any formal training and were only exposed to PC in the context of clinical electives as students or only after they started working as medical doctors. For NQPs at UCH Ibadan, a mandatory orientational visit to the PC centre of their institution at the beginning of their clinical housemanship was identified as important and for some, the only source of PC knowledge and exposure. Interviewees of the UNTH cohort did not describe a similar mandatory orientational visit to their institutions’ PC unit.“Uh, I would say yes and I would say no. Even, I’m not trying to be political, but the thing is uh, we could do more. I thought just, uh, that lecture and some other experiences here and there, are not really enough, uh, in terms of the psychological preparedness. It’s not entirely about being able to control the pain. Some people might not have the physical pain, but emotional pain and all. I don’t think we have been adequately prepared for that. How you break news to people, how you talk with those, who you know are going to pass on, in a short time. So, I don’t think its optimal, but it’s something. But it’s not, it’s not enough.” – P2I, 20When discussing the perceived benefits of university PC exposure, the focus was repeatedly placed on communication and psycho-social issues in PC. The participants lamented a lack of preparation concerning these key aspects of PC.Personal Understanding of PC as a potential variable to NQPs’ perceived self-efficacy and preparedness in practising PC, overall, a solid understanding of basic PC principles was documented, as key components of PC were mentioned by most participants and severe misconceptions were rare. However, misconceptions like equating PC with hospice care  or with strictly “terminal care”  came up at both study sites and may be an indicator of insufficient PC education.Looking at participants’ Attitudes and Role Concepts were analysed as a variable on the personal level, potentially influencing the interviewees’ perceived self-efficacy and preparedness in practising PC. Attitudes and role concepts reported included the idea of a “privilege” being a medical doctor . The concept, summarised by the subcode: ‘Being a doctor is a big responsibility. Compose yourself’, was widespread, possibly influencing participants’ PC practice. Some participants described themselves as “a bridge between God and man, to save humanity” , as others pointed out that in their work as medical doctors, they “have a responsibility to God” – “God judges” . Furthermore, ideas of “a service to humanity”  and making peoples’ “lives better”  were repeatedly brought up. In this context, participants explained how they were geared towards valuing life and preventing death. The concept, summarised by the subcode: ‘Saving lives – Don’t give up on a patient’, as the defining role of a medical doctor, was mentioned frequently. This is in accordance with the “pro-life” attitude previously mentioned and may lead physicians to not consider PC treatment options, as outlined above.Additionally, participants’ “emotionally tasking”  by several participants. They said that terminally ill patients “are not like other patients”  and that medical training should focus on peculiar challenges regarding caring for them.“And then you’d know how well to handle patients with those illnesses. Because okay, with our job, there is a lot of tension, a lot of stress, sometimes you tend to maybe, uhm, (clicks tongue)/ for patients that are terminally ill, you have to be a little more, you have to be a little more empathic and things like that. So, I think, education and that would (help?). Because they are not like other patients, who have illnesses that you just treat and they can get discharged like that.” – G3I, 42Care for the terminally ill was described as “there is a higher being in charge of healing and health” . Many interviewees offered their personal religious views, stating that they are personally religious, oftentimes saying they are Christians, believing in God, miracles, and godly interventions. These observations were made at both study sites, and no significant differences were observed between the study sites.Equally, participants’ religious sentiments were seen as an important variable influencing their perceived self-efficacy and preparedness in practising PC, as beliefs in God, miracles and godly interventions were extensively discussed and documented throughout all interviews. Although mixing personal religious beliefs with medical practice was seen as inappropriate according to medical ethics by some, others explained that In summary, participants’ professional development, their experienced education and prior exposure to PC, as well as their personal attitudes and role concepts, were identified as variables to NQPs’ perceived self-efficacy and preparedness in practising PC on a personal level. Prior education and experiences in PC may be seen as relevant variables for NQPs’ perceived preparedness and self-efficacy in practising PC. However, the evaluation of the received university PC exposure varied considerably among interviewees. This is in accordance with the varying degrees and extents of PC exposure reported by interviewees. This may be an indicator of missing nationwide standardised undergraduate PC education.saving lives” as the core objective of a medical doctor were documented abundantly.The participants’ attitudes and role concepts were dominated by religio-spiritual sentiments shaping their views on PC practice, as well as by perceived societal pressure in their roles as physicians. Equally, a tendency towards a curative approach towards medical practice and the notion of “To highlight key components of PC practice in Nigeria and to assess NQPs’ perceived self-efficacy and preparedness in practising PC, codes which concentrated on the actual PC practice of the interviewed NQPs were defined and analysed.Breaking Bad News were central within the semi-structured interviews. The code codes text segments which are discussing participants’ perceived self-efficacy and preparedness in breaking bad news, as well as potential variables directly influencing them. Interview segments discussing the core PC topics, Prognosis and Diagnosing Dying were summarised under a separate code. It highlights individual and societal attitudes and perspectives towards the topics of prognosis, imminent death, and dying in a PC context. Involving the family is a key aspect of PC. It was therefore of interest to research how this aspect of PC is perceived and practiced by NQPs and what cultural, societal, or economic variables influence the involvement of patients’ families in Nigeria. Finally, Pain and Symptom Management was defined as a code summarising text segments discussing the interviewees’ perceived self-efficacy and preparedness in practising this aspect of PC.The topics of communication and passive learning”  by observing senior colleagues. Accounts of personal experiences in breaking bad news varied. Some described their experiences as “not pleasant” . They expressed their inability to break bad news to cancer patients. In contrast, others described feeling “not scared”  or “confident” . Interview segments in which participants indicated that they had either no confidence, low confidence, or just moderate confidence in breaking bad news were summarised with the subcode: ‘A hard story to tell – I am not too confident’. This was coded in most interviews, indicating that many participants did not feel very confident in communicating bad news. The notion, “I don’t even want to do it” , was often stated. One interviewee described it as “emotionally disturbing” .“But a patient who comes for the first time, maybe in clinic, they tell you to clerk, just even as a student. And they are making diagnosis of stage four cancer. The patient is saying, ‘I hope I be fine, what can you say?’ Though you are not the doctor, but you know already, the prognosis is poor. In school then, I would not even talk to (him?) again. I’ll just stop my and go. Like, there was a time I was, in school then, and I saw a teacher of mine in secondary school, who came for a cancer clinic and I (stopped?) the clinic, till the man stopped come. I couldn’t face it.” – S4I, 44Many respondents reported learning how to break bad news through practical experiences rather than through classroom lectures. Additionally, they described ““Well, you know, everybody that comes to hospital wants you to tell him that he will get better. That’s the most important thing. And then, […] especially in advanced metastasis that you wanna tell your patients that, see the drugs/ the main drugs that main treat this case is not there and it/ that there/ that even if it’s there that it’s going/ you’re not gonna get better. It’s a very hard question to answer and it’s even a very hard story to tell. And nobody wants to hear that. Even your patient. And then, this somebody you’ve been managing with all confident, that’s why he came to you, to get better and you come to tell him that you can’t get better. The worst patient will wanna hear, that doctor cannot help him.” – M1E, 35Reasons for the reduced confidence mentioned were empathy for patients in these situations, fear of disappointing the patients’ hopes, and fear of emotional overreaction by patients or relatives. Fear of false prognosis of death in a superstitious society was reported repeatedly. Additionally, there is the hierarchical system within Nigerian healthcare institutions, where breaking bad news is socially expected to be done by elders. The resource-limited setting directly influencing participants’ perceived confidence in communicating bad news was frequently mentioned.“Of course, I’m not confident, because, nobody wants to be breaking the bad news to the patient. So, most times, we look for a very, near perfect way to say it. But the confidence is not always there. Most especially if the patient is not enlightened. So, it becomes a little bit more difficult.” – P5E, 42Furthermore, breaking bad news to less-educated or enlightened patients was reported to be harder for some.“But my experience now has made me more confident. I am now able to/ I am more psychologically prepared. I now have the empathy and let me say the strength, and the know-how of passing this information, without necessarily making them depressed.” – S4I, 44On the flipside, a positive connection between perceived self-efficacy and preparedness in breaking bad news and respondents’ PC knowledge and clinical experience, was repeatedly emphasised.“so that, irrespective of your personality or your type of person, you are able to communicate appropriately” . Involving a third party when breaking the news, as well as connecting to patients’ religious sentiments as a way of comforting them through bad news, was described as increasing perceived confidence in young physicians. Equally, participants’ personal beliefs in God’s intervention and miracles positively influenced their perceived self-efficacy and preparedness in breaking bad news.Being able to break bad news the assumed right way was identified as a variable that positively influenced the participants’ perceived self-efficacy and preparedness. It was argued that knowing how to break bad news and having guidelines to follow could increase the physician’s confidence and therefore the quality of care given, What raises confidence?’ , and culturally, negativity is avoided. Some indicated that they themselves were afraid of the word.“But I use, uh, euphemisms or proverbs. In this part of the world they like proverbs a lot. So, if you put it in proverbs, it's easier for them to understand. They can easily link it to a context or circumstance which they can, have a vision. So, with the whole medical jargons which they may not get, putting (it?) in a proverb or in their native language in a way they understand, it's easy for them to even get a hint of what you are trying to say without having to say it.” – S2I, 42When examining the use of the word Prognosis and diagnosing dying were identified. The participants discussed widespread and strong religious beliefs in God’s supreme power, God’s intervention, and miracles. These beliefs lead to general optimism and sometimes unrealistic expectations among terminally ill patients and physicians. Furthermore, a culture of avoiding negative predictions rooted in superstition and a “pro-life”  attitude was observed among patients and medical professionals alike, directly influencing NQPs’ perceived self-efficacy and preparedness in practising PC. Throughout the interviews, a conflict of values was seen between the medical practitioners’ personal role concepts of saving lives, associated with societal pressure perceived in their role as medical doctors, a cultural climate of avoiding negativity, and medical knowledge of the incurability of certain disease conditions. It was pointed out by NQPs how more experience and training are needed to meet this challenge.“Uhm, dying, yes, is a natural thing, most of the time. But still when it comes, it’s very scary, even for doctors. Uhm, you have to deal with a lot of, uhm, emotional and psychological, uhm, issues. And particularly with the relations. Uhm, the patient that suffers the illness, sometimes, many times, some of them, they are hopeful that they will get better. When they see a doctor, they’re like, ‘oh, doctor save me, doctor save me’, and you know that, I can’t save this person, this person is like going to die. Uh so, this/ and then the patient has (placed?) so much premium on you. So, you are caught in-between your professional experience and knowledge and how to translate it to the patient. Especially in this part of the world, where a lot of, I don’t know how to put it, spiritual/ you know, people believe, until it happens, that is when we believe that somebody is actually going to die. You cannot predict death. Although then, you know, professionally, you can. But your patient will not accept it from you. So, it takes a lot of, I think experience and training. At my level, the confidence is still not there. No. Not such much, no.” –P7I, 30Several conflicting ideas relevant to the participants’ perceptions of right to be informed about and involved in the patients’ management and decision-making processes was emphasised. The importance of the patients’ families as an active part of the care team was underlined, as the relatives were seen as the ones “doing the running” . All of these led to an overall high perceived self-efficacy and preparedness in involving the family among the interviewed NQPs. It was pointed out that without proper communication, relatives may withdraw their financial support and active participation. Participants explained that, especially in chronic illness and other situations where the outcome is either unclear or unpleasant and prolonged therapy is expected, good communication with relatives is needed to guarantee their support throughout the process. Questions on confidentiality and patient autonomy were discussed in this context. Family involvement was linked to increased compliance, understanding, and acceptance by patients. This may lead to a higher perceived self-efficacy among NQPs. Talking to relatives first, instead of directly to patients, was described as making it easier for NQPs to break bad news. A low level of education among patients and the need to identify better-educated relatives were emphasised.“I think I’m more confident talking to the relatives than the patients. Because most of our patients are not the very educated kind and they’re usually very poor. They are not very literate. So I, when I talk to the relatives, I’m more confident.” - P5I, 42The high value of the family within Nigerian society warrants relatives to be involved in patient care. The fact that relatives are the ones financing the patients’ therapy and consequently have the “The sensitisation in the first place is really not, personally to me, is not adequate. It’s not adequate. Because a lot of times when it gets to that point, most times, patients’ relatives just disappear. They neglect, because, they feel, ‘what’s left, this person is eventually going to die’, you know, and all that. Maybe because the sensitisation is not, is really not adequate. […] You know but, one of the habits in Nigeria, uh, is the fact that, why waste money when we know that eventually this is the outcome. Let’s try as much as possible to invest your resources, you know, in, you know, people that we can save, you know, and all that. But that shouldn’t be.” – M2I, 82The discussion on the limitations of family involvement included the workload and time restrictions of NQPs. Additionally, the economic constraints of a resource-poor setting associated with a lack of awareness and sensitisation to PC benefits among many patients and relatives was stated as one of the challenges of involving the family.Most participants felt confident in managing pain and symptoms. Sources of confidence and increased perceived self-efficacy and preparedness included previous clinical experience, medical training, supervision by senior colleagues, a procedural approach of grading pain, and a stepwise, systematic approach in pain management, as well as direct positive results. In addition, personal experiences of suffering pain as a motivating factor in readiness to offer pain control were described. Additionally, participants’ role concepts as physicians reportedly increased their perceived preparedness in offering pain and symptom management, since reducing discomfort in patients was mentioned as one of the key objectives of a medical doctor. However, limitations in their perceived self-efficacy and preparedness in applying pain control measures were discussed by the participants, and their self-confidence was expressed especially if limited to a basic level of pain management. Several participants indicated that fear of potential side effects and drug abuse may reduce their perceived self-efficacy and preparedness in applying pain and symptom management in patients. While the lack of experience, especially in the use of opioids, was lamented, it was also pointed out that a lack of resources and limited affordability and availability of drugs, facilities and other healthcare means reduced confidence. This is directly related to the frame conditions of resource-limited settings, as discussed above.Pain and symptom management in Nigeria more generally, the term “pele-pele anaesthesia”  was mentioned. This word ‘pele’ derives from the Yoruba language which translates to ‘sorry’, meaning as much as just using words instead of effective pharmaceutics. In that context, the cultural perception of pain in Nigeria was touched upon, and a general scepticism towards Western medication was reported.“Let me not say part of our culture, but (clicks tongue) we see things that when things are painful that’s when things are serious. And then uh, the ease or will I say the reaction to it, is more, more slower than that of the westerns. Because I think for/ even (now?), our own people, if you give somebody a lot of analgesic drugs to take, tablets, he will say, ‘all these drugs doctor, what will I use all this drugs/’, well, (is it?) better (he?) to carry his painful leg and be walking around than taking the medication. But, , a white person cannot do that, just because he has a small pain, he will take a lot of analgesics. So, (clicks tongue), the way/ our own perspective about drugs, per se, is far different than that of the other people. But I think it’s because, (clicks tongue), people don’t wanna feel the fact that there’re coming to hospital. As in, they feel hospital is the kind of place where you’ll come; you will see a lot of things that doesn’t improve your condition. So, anything associated with it, people run away from it. I think that’s it.” – M1E, 85Discussing In summary, when looking at the areas breaking bad news, prognosis and diagnosing dying a limited perceived self-efficacy and preparedness were documented among many NQPs at both study sites, leaving room for improvement. The major influences were socio-cultural factors as outlined above. Interviewees emphasised the potential positive impacts of PC training, experiences, and institutional guidelines to follow.In comparison, in the areas involving family and pain and symptom management, participants reported a higher level of perceived self-efficacy and preparedness. However, socio-cultural and socio-economic influences have also been documented. Challenges of a resource-limited setting and socio-cultural characteristics of their environment influenced interviewees’ perspectives, potentially reducing their perceived self-efficacy and preparedness.This study offers insight into NQPs’ perceived self-efficacy and preparedness in practising PC in Nigeria, as well as into variables potentially influencing these perceptions. Main influences, recurring in all interviews were socio-economic considerations of a resource-limited setting, cultural and religious aspects, and poor health literacy among patients in Nigeria. However, the perceived impacts of PC education and experiences were documented.With reference to communication in PC, especially in the areas of breaking bad news, prognosis, and diagnosing dying, participants reported limited perceived self-efficacy and preparedness. These results are consistent with previous reports on communication in PC in Nigeria , 20, 40.Compared to communication in PC, participants reported a higher level of perceived self-efficacy and preparedness in the areas family involvement and pain and symptom management. A reason for this could be seen in the better educational foundation reported by many participants regarding pain and symptom management. However, perceived competence in pain and symptom management is limited by the availability and affordability of adequate pain medications. Furthermore, fear of potential side effects and drug abuse, and the lack of experience in the use of opioids may reduce perceived self-efficacy and preparedness in managing pain and symptoms. These findings are in line with relevant research on PC in Nigeria . HoweverRegarding family involvement, a socio-cultural and socio-economic context in which the involvement of families in patient care is almost imperative can be seen as contributing to high perceived self-efficacy and preparedness among NQPs in involving family members. However, even though the perceived preparedness in communicating with patients’ families seemed higher among interviewees compared to communicating directly with patients, important information may not always be fully revealed to avoid upsetting relatives, as they may withdraw their financial support in cases where death is imminent. Earlier findings have pointed out an environment of insufficient PC education and power imbalance in care relationships as contributing factors .A US-American study  revealedSocio-economic challenges of a resource-limited setting came up abundantly throughout the interviews at both study sites. They were identified by the participants as potentially affecting their perceived PC competencies in different key areas. The perceived self-efficacy and preparedness of NQPs in offering pain and symptom management were reduced owning to the limited availability and affordability of pain-relieving drugs and other healthcare means. Insufficient implementation of PC and poor existing PC structures in Nigeria were reported by participants, with deficiencies especially in cooperative care, potentially impacting interviewees’ perceived self-efficacy and preparedness. Meanwhile, poverty and lack of resources were linked to an observed lack of consideration given to PC, both among healthcare workers and society. Furthermore, participants repeatedly linked a lack of awareness and sensitisation to the benefits of PC to a low level of formal education and poor health literacy among many patients. Our findings are consistent with the available research on PC in resource-limited settings, such as in some sub-Saharan African countries –9, 45. TThe resource-limited setting was also referenced when discussing moral distress experienced by offering PC in Nigeria. Moral distress was defined by Jameton  as occurIn this context, this study revealed a lack of existing formal support systems, offering moral support for physicians dealing with emotionally challenging patient care. Our findings suggest that this lack of formal support systems may influence NQPs’ perceived self-confidence in offering quality PC as perceived societal pressure in their roles as physicians mounts. Further research is needed on this topic in African settings to support this claim. However, the authors posit that the development of structures that offer moral support to physicians dealing with emotionally challenging patient care is urgently needed. Establishing such support systems within healthcare institutions seems to be a relatively easy way to adapt measures for future practice across Nigeria. In the 2020 European Association for Palliative Care (EAPC) spiritual care white paper , certainAs can be seen in the interviews at both study sites, cultural values, religiousness and spirituality greatly impact attitudes towards PC, death, and dying. Hence, communication in PC in Nigeria must be viewed through the lens of a highly religious and superstitious society. The participants reported that most Nigerian patients tend to enquire about a positive outcome rather than a true prognosis because they are generally optimistic about their chances, and culturally, there is a tendency to avoid negative predictions. A culture of general optimism may lead some medical practitioners to shy away from openly predicting a negative outcome for their patients. These findings are in line with the description of an “information censorship” in Nigerian PC practice . HoweverOur data suggest that the conflict between the knowledge of an unfavourable prognosis on the medical practitioner’s side and hopes of miraculous healing on the patient’s side negatively impacted NQPs’ perceived confidence and preparedness in communicating bad news. Conversely, connecting to patients’ religious sentiments as a way of comforting them through bad news was described by participants as increasing their perceived self-efficacy and preparedness. Equally, participants’ personal beliefs in God’s intervention and miracles positively influenced their perceived preparedness in communicating bad news. However, these religio-spiritual sentiments among NQPs, although increasing perceived preparedness in communicating bad news, may lead to only partial disclosure of bad news as medically unjustified hope of miraculous healing is kept alive in patients. Partially, it is also because of physicians’ self-perception as God’s handyman. These findings underscore the socio-cultural and religio-spiritual impacts on commun ication in PC. The data may suggest a lack of formal education and missing institutional guidelines for Nigerian NQPs to follow in communicating bad news. Therefore, it is imperative to develop effective and culturally sensitive communication, listening and self-reflection skills. These skills are seen as core competencies at the generalist PC level, and all healthcare professionals should be trained accordingly .The findings from Nigeria demonstrate moral distress among young physicians caused by socio-economic restrains and socio-cultural characteristics of society. The interviews indicated that it is challenging to maintain an ethical stance in delivering bad news if patients prefer to remain optimistic and neglect the negative prognosis. This challenges young physicians' personal integrity. Integrity is defined as “a personal choice, an uncompromising and predictably consistent commitment to honour moral, ethical, spiritual, and artistic values and principles” . The intThis study was designed as a purely descriptive, qualitative pilot study. No empirical qualitative data on the perspectives and perceptions of newly qualified Nigerian physicians regarding PC were available prior to this study. We aimed to highlight variables pertinent to perceived self-efficacy and preparedness of NQPs in Nigeria. Our data open up a wide variety of relevant topics on NQPs perceived PC practice. Further research should delve deeper into some of the areas documented in our data, such as perspectives of patients and family members regarding socio-cultural and socio-economic influences on their perceptions of PC. Further analysis with the available data from this study could be performed in the future, such as individual case or cross-case analysis, to comprehensively explore some codes from our data. This study examined the perceived PC practice competencies of NQPs from the Southern axis of the culturally and religiously highly divers Nigeria. The non-inclusion of NQPs in Northern Nigeria might introduce a sampling bias, considering that differing Islamic and cultural characteristics may exist in that region. The sampling method leads to the problem of self-selection bias, as the participants who voluntarily chose to participate in this study could be more interested in the topic, more open towards ideas of PC, or more knowledgeable about the issues discussed than their peers. In few cases, not having a perfectly private and quiet interview situation could have impacted the participants’ answers. A limitation of the qualitative data analysis process is that interview transcripts were not returned to the participants for comments and/or corrections. Another limitation is that qualitative data analysis was performed by the corresponding author of the study as a single coder. This was addressed to some extent by continuous and intensive correspondence with the study supervisors throughout the qualitative data analysis process and rigorous documentation of each step of the interpretive process.The findings demonstrate how challenges of a resource-limited setting and socio-cultural characteristics of their environment influenced interviewees’ perspectives, perceived self-efficacy, and preparedness in key areas of PC. The data emphasise the importance of developing and implementing contextually appropriate PC training and education measures for newly qualified medical doctors to enable the delivery of culturally-sensitive, high-quality PC. A focus should be placed on the areas of communication in PC, as well as on cultural and religio-spiritual conceptions of mourning, death and dying. Active learning experiences should be favoured over strict classroom lectures and passive, observatory learning.The study highlights the importance of more and improved PC education for healthcare professionals in general and medical doctors in particular, at the undergraduate and postgraduate levels and in form of continuing medical education. The findings indicate a low level of perceived self-efficacy and preparedness in appropriately communicating bad news among the interviewed NQPs in Nigeria. This is consistent with preliminary surveys of Nigerian healthcare professionals , 55. NonAdditional file 1. Interview Guide.Additional file 2. Code System.Additional file 3. Example Quotations.


Brain health entails mental wellbeing and cognitive health in the absence of brain disorders. The past decade has seen an explosion of tests, cognitive and biological, to predict various brain conditions, such as Alzheimer's Disease. In line with these current developments, we investigated people's willingness and reasons to—or not to—take a hypothetical brain health test to learn about risk of developing a brain disease, in a cross-sectional multilanguage online survey. The survey was part of the Global Brain Health Survey, open to the public from 4th June 2019 to 31st August 2020. Respondents were largely recruited via European brain councils and research organizations. 27,590 people responded aged 18 years or older and were predominantly women (71%), middle-aged or older , and highly educated (69%). Responses were analyzed to explore the relationship between demographic variables and responses.We found high public interest in brain health testing: over 91% would definitely or probably take a brain health test and 86% would do so even if it gave information about a disease that cannot be treated or prevented. The main reason for taking a test was the ability to respond if one was found to be at risk of brain disease, such as changing lifestyle, seeking counseling or starting treatment. Higher interest in brain health testing was found in men, respondents with lower education levels and those with poor self-reported cognitive health.High public interest in brain health and brain health testing in certain segments of society, coupled with an increase of commercial tests entering the market, is likely to put pressure on public health systems to inform the public about brain health testing in years to come. The concept of brain health has emerged in recent years to describe the state of brain functioning. It is a multifaceted concept because it refers to how well a person's brain functions across several areas including cognitive, emotional, sensory and motor function . The WorBrain health can be affected by a wide range of brain disorders i.e., neurological and psychiatric disorders, such as dementia, Parkinson, stroke, depression, schizophrenia and autism. Due to increased longevity, brain health related diseases are expected to increase in the coming decades, worldwide . Most brThere are relatively few studies based on the broad concept of brain health; research is still mostly focused on one or few specific aspects of it . Studies that have explored brain health awareness find that people are generally conscious of their brain health and are interested in learning more about it, although they are less aware of brain health than other health issues –12. StudIn line with the numerous studies that have documented high public interest in medical testing , severalAt present however, no single test can comprehensively assess or quantify brain health . DiffereFew studies have explored public interest in undertaking testing to learn about their personal brain health, or what motivates such an interest. Given the substantial public interest in brain health and the growing availability of commercial medical testing, there is a need to explore whether people are interested in testing their brain health, and what motivates such an interest in testing (or not). The purpose of this paper is therefore to explore people's interest in undertaking a hypothetical brain health test to learn about their risk of developing a brain disease.As part of a large-scale international survey—the Global Brain Health Survey (GBHS) —respondewww.lifebrain.uio.no. There was no compensation and participants had to have their own internet access, so incentives for fraud or duplications were low. A comprehensive description of the survey and its design can be found elsewhere  Willingness to take a brain health test: “Imagine a simple brain health test to learn about risk of developing a brain disease. Would you wish to take such a test?” Respondents could select: Yes—definitely; Yes—probably; No—probably not; No—definitely not.2) Willingness to test for unpreventable or untreatable diseases: “Would you take a test even if it provides information about a disease that cannot be prevented or treated?” Respondents could choose between: Yes—definitely; Yes—probably; No—probably not; No—definitely not.3) Reasons for taking a brain health test: “Why would you take a brain health test?” Respondents were asked to select the one or two most important out of the following: (a) To get information about my cognitive and mental health, (b) To determine my risk of developing a brain disease, (c) To respond if I am at risk, e.g., change my lifestyle, seek counseling, or start treatment, (d) To prepare myself for the future , (e) Other motivation (please specify).4) Reasons for NOT wanting to take a brain health test, if they answered No to question 1; “Would you wish to take a test”): “Why would you NOT take a brain health test¿‘ Respondents were asked to select up to two most important reasons, out of the following options: (a) I do not want to worry about something that may not happen, (b) I do not want to know about a disease that could not be prevented or treated, (c) I would be frightened by the result, (d) There is nothing I can do for my brain health anyway, or (e) Other reasons (please specify).5) Likely reactions to test results on brain health risk: “Imagine you undergo a brain health test, and it shows that you have a risk of developing brain disease. What would be your most likely reaction?” Respondents were presented with a list of reactions and were asked to rate these using a four-item Likert scale : (a) I would seek professional help , (b) I would seek advice from family and friends, (c) I would seek information online/at the library, (d) I would change my lifestyle if required, (e) I would plan for the future, and (f) Is there anything else you think you might do? Please describe (free text).6) Brain health test criteria: Respondents were asked to imagine it was possible to take a simple brain health test, like measuring blood pressure or cholesterol levels, to reveal risk of developing brain disease. Respondents were asked to select the one to three most important characteristics that such a brain health test should have: (a) Affordable, (b) Quick to take, (c) Accurate, (d) Painless, (e) Subsidized by social security (via the GP), (f) Offered online with direct access to the results, (g) Other (please specify).We also explore 10 demographic variables related to: age, gender (self-identified), education level, relationship status, experience or education in health care, experience of long-standing illness or disability, experience of taking care of a family member with brain disease, experience with taking part in brain research, self-assessed cognitive health, and self-assessed mental health. For the variable “self-assessed cognitive health” respondents were asked: “How would you describe your ability to think, remember and learn? . For “self-assessed mental health” respondents were asked; “How would you describe your ability to balance your mood and emotional well-being?” . For the gender category, there were four options: Male, female, other, prefer not to answer.Would you take a test even if the disease cannot be treated or prevented?), the responses “Yes, definitely” and “yes, probably” were categorized as a positive association between the question and the response, while “No, probably not,” and “No, definitely not” were categorized as a negative association. Responses for the third, fourth and sixth questions were binary. For the fifth question (What would be your most likely reaction?), the response categories “Definitely yes” and “Fairly likely” were categorized as being likely to react in the given way (positive association), and “Fairly unlikely” and “Definitely not” were categorized as being unlikely to react in the given way (negative association).For the analyses of demographic differences, responses were analyzed using generalized binomial linear models with R version 4.1.0  at a 99%For each response we estimated 10 models, using a single predicting demographic variable for each model, to analyse the relationship between responses and demographic characteristics. To simplify data interpretation, complex demographic variables were reduced to three or fewer data categories. Education level was reduced to either “higher education” (university/college degree) or “lower education” . Age was reduced to three categories, “young adult” (40 and below), “middle-aged” (41 to 60 years) or “old adult” (above 60 years). Self-assessed mental and cognitive health were categorized as either “good” mental or cognitive health , or “poor” mental or cognitive health (below average or very poor). Relationship status was reduced as either in a stable relationship  or single . The response category with the highest number of data points was used as the reference group.Due to the large sample size, almost all group differences were statistically significant but not necessarily of practical importance. Thus, in the results section we report only Odds Ratios (ORs) of the binarized responses showing the most important differences. All reported ORs in the text are significant at the 1% level of probability. Complete tables of all the descriptive statistics for all variables are provided in the online Supplementary material, as well as models for continuous data for robustness.Twenty seven thousand five hundred and ninety people from 81 countries participated in the survey, mostly from Europe (98%): 36.8% in the United Kingdom, 25.5% in the Netherlands, 12.9% in Norway, 7.6% in Spain, 4.0% in Denmark, 3.8% in Germany, 2.8% in Sweden, 1.1% in Italy and 1.1% in Ukraine. Respondents outside of Europe primarily lived in the United States (0.6%) or Turkey (0.5%). 1.7% were from other parts of the world. Most respondents were middle aged-or older , female (71.1%), had a university/college degree (68.6%), and were in a stable relationship (71.8%). Forty-three percent of the respondents had participated in brain research, 38.5% had education or work experience in health care, 46.5% had experience with looking after a family member with brain disease and 40.4% had long-standing illness, disability, or health problems.Join Dementia Research  in the UK and Hersenonderzoek  in the Netherlands (NL) with the remainder of respondents from UK  and NL (n = 974), respectively. Over half (58%) had been recruited through the two research registries in the UK and the Netherlands. To illustrate the selectivity of recruitment, we compared those participants recruited through Most respondents (60%) would “definitely” take a simple brain health test to learn about risk of developing a brain disease, whereas 31% would “probably” take such a test. Only 1% would “definitely not” take a test.Young respondents (40 or younger) were less likely to want to take a brain health test , as well as respondents with employment and/or education in healthcare .When asked whether they would want to test for risk of developing brain disease that was unpreventable or untreatable, 43% of respondents would “definitely” take a brain health test even if it provided such information, and 43% would “probably” do the same.Young respondents (40 and below)  and respondents with employment and/or education within healthcare were less likely to test for risk of disease that is unpreventable and untreatable  compared to older respondents (above 60) and those without healthcare experience.As shown in Respondents with poor cognitive health  and those with lower education  were less likely to take a test to respond to risk compared to respondents without these characteristics.Respondents who wanted to take a test to get information about cognitive and mental health were more likely male , and with poor mental health .Respondents more interested in preparing for the future were more likely to have had participated in brain research  and to have had experience in taking care of a family member with brain disease , than respondents without these characteristics. Younger respondents were less likely to take a test in order to prepare for the future .Of the respondents who did not want to take a test (9%), most did not want to know about a disease that could not be prevented or treated, and a quarter did not want to worry about something that might not happen .Younger respondents and those with poor mental health would to a larger extent avoid testing because they would be frightened by the results compared to older respondents  and those with good mental health .Respondents with experience of taking care of a family member with brain disease were more likely to not want to know about a non-preventable or untreatable disease  compared to those without such experience.Almost all respondents (above 95%) said that they would definitely or be fairly likely to change their lifestyle if necessary, seek professional help, and plan for the future based on the results of the  brain health test .Respondents with lower education were more likely to seek professional help  but less likely to plan for the future  or seek information  compared to respondents with higher education. In comparison, respondents with employment or education within healthcare were less likely to seek professional help , but more likely to plan for the future  and seek information  compared to respondents without such experience. Respondents who had taken care of next of kin with brain disease were also more likely to plan for the future  and to seek information , in addition to changing their lifestyle , compared to those without such experience.Respondents with health-issues were overall less interested in changing their lifestyle than other respondents, including those with experience of long-standing disability or illness , with poor cognitive health , or poor self-rated mental health .Asked to indicate up to three of the most important criteria of a brain health test, respondents thought a test should be accurate (82%), affordable (48%), and be subsidized by social security 46%, see .Men thought it was more important that tests were quick  than women. For respondents with lower education, subsidization of tests was more important  than to those with higher education.Respondents with poor cognitive health thought test subsidization was more important  than those with good cognitive health, as did respondents with experience of long-standing illness or disability  and respondents with poor mental health OR 1.21, 99% CI 1.10–1.33). Respondents with poor cognitive health thought it was less important that a test should be painless  or quick . Similarly, respondents with poor mental health thought it was less important that tests were quick  than respondents with good mental health.Test accuracy was more important to respondents who had cared for family members with brain disease , and to respondents who had participated in brain research , than other respondents.This study is based on an international survey on public perspectives of brain health with 27,590 respondents and is one of the largest surveys to date. We explored public willingness to test for brain disease, and the motivation for doing so. Our main findings were that we found high public interest in brain health testing, even for diseases that cannot be treated or prevented. Further, those most interested in brain health testing were older (above 60), male, lower educated and with poorer cognitive health. The main reason for taking a test was to be able to act if they were found to be at risk of brain disease, such as changing lifestyle, seeking counseling or starting treatment. Most people said they would seek professional help and change their lifestyle if a test revealed they were at risk of brain disease. Of all the criteria for a good brain health test , accuracy was rated as most important.In our study 91% of respondents stated they would definitely or probably take a brain health test to learn about the risk of developing a brain disease, and 86% would do so even if the disease was untreatable or unpreventable. These findings are consistent with previous studies that also have found high public interest in testing for brain diseases , 34–39. Our results indicate differences across demographic characteristics in the willingness to test for brain disease. We found that older people, men, lower educated, those with poorer cognitive health and those with first-hand experience with disease, either through personal health issues or through family members with brain disease, are most interested in testing for brain disease, including for untreatable or unpreventable brain diseases. Our finding that testing interest corresponds with pre-existing health issues or caregiving experience of family members with brain disease supports the notion that personal experience with brain disease and perceptions of personal risk increases the relative willingness to undergo testing for brain disease , 11. ForOn the other hand, we found that respondents with education and/or employment in healthcare were less interested in testing their risk of brain disease than those without. We can only speculate that health care professionals are less interested in testing because they are more aware of the limitations of current predictive tests. Relatedly, studies find that knowledge of medical testing, such as understanding the inherent prognostic uncertainty and limited clinical validity of predictive tests, reduces the motivation for brain-related testing , 39, 41,why people would be willing to do so. We found that the most important motivation for testing for brain disease was to respond if they were found to be at risk, for example through lifestyle changes. This finding concurs with studies that have shown how people are most inclined to change behavior if they are personally afflicted by brain disease or cognitive decline —more than one would expect in the general population. Both groups—those recruited through registers and the “non-organised”—were mostly highly educated, middle-aged, or older, and female, and therefore not representative of the general population. Despite this selectivity, the respondents were also people who had access to the internet and an interest in the topic, as well as the motivation to spend time in answering questions anonymously, without any further financial or other external motivation. The respondents were sufficiently interested in completing the questionnaire on their own initiative, and they therefore represent the stratum of society that is more informed about brain health and also likely politically more engaged than the average citizen.Despite a self-selective sample with e.g., a large proportion of higher educated female respondents already interested in brain health, we believe this study provides several key insights that may be relevant for health authorities and policy makers, as interested citizens are likely to influence public opinion disproportionately. Firstly, we find that the vast majority of respondents wanted to take a simple hypothetical test to detect risk of brain disease. Test interest was high among respondents with personal experience of illness or of taking care of next of kin with brain disease. Given the expected increase in people with personal or family-related experience in brain diseases  our resuImportantly, our results also show that for many respondents, obtaining personal brain health information was by itself a goal, regardless of preventative opportunities. While expressed interest in testing does not necessarily translate into actual testing behavior, this might change as less invasive and more accessible tests are becoming available. Studies have shown that the availability of high-quality information on the limitations of medical tests can adjust public expectations and thereby reduce the willingness to undergo testing. Relatedly, we find that respondents with experience and/or education in health care were less interested in brain health testing than other respondents. Studies also indicate the importance of access to high quality information after receiving test results to limit adverse reactions. A key task for both providers of medical tests and health authorities is hence to increase public education on the limitations and implications of medical testing and thoughtful communication of test results.Secondly, we find that most of the respondents indicate that a key motivational factor for testing for brain disease is changing their lifestyle. While research shows that intention to change behavior increases the likelihood of doing so, people generally do not change their behavior after receiving test results, despite their intentions to do so . Test reOther central motivational factors for undertaking testing were seeking professional help and treatment if found to be necessary. This finding suggests that future public demand for professional follow up could be significant should tests for brain disease risk become widely available to the general public, in particular since risk factors are also present in people who never develop brain disease , 25. WidIn sum, considering the increasing amount of consumer tests entering the market, paired with optimistic, popularized representations of medical testing by the media, there is a need to foster realistic public expectations of brain health testing. Our study suggests a critical role of public authorities to educate the public on brain health testing and the provision of public brain health interventions and activities. Recognizing the difficulty of succeeding with lifestyle changes, we furthermore call for more research into factors that facilitate behavioral change for looking after ones' brain health. At the same time, public perspectives of brain health are evolving, and future research should therefore repeat this kind of survey at regular intervals to chart changes in perceptions, also in other parts of the world and in different segments of the population.https://github.com/Lifebrain/gbhs. All source materials for data retrieval, cleanup, modelling and visualisation is also contained in the same repository. All these materials can also be found with their doi: 10.5281/zenodo.7116985.The data is publicly available with a CC-BY licence through GItHub as a tab-separated file or as an R data package, The studies involving human participants were reviewed and approved by Regional Committees for Medical and Health Research Ethics in Norway (2017/653 REK SørØst B). The survey was also approved by the University of Oxford Medical Sciences Interdivisional Research Ethics Committee (R67364/RE001) and the Medical Ethics Review Committee of VU University Medical Centre in the Netherlands for permission to disseminate the survey. The patients/participants provided their written informed consent to participate in this study.RC and NF drafted and finalized the manuscript. IB-L led the study. IB-L, AM, BF, SS, CS-P, CD, WB, EZ, DB-F, PG, LN, KM, SD, and KW conceived the study and developed the survey. RC, IB-L, AM, BF, KE, EZ, CD, WB, DB-F, CS-P, and KW were involved in data collection and analysis. AM, EZ, and KE helped with the core statistical analysis. RC, NF, IB-L, KE, BF, TR, CD, SS, WB, CS-P, DB-F, PG, AF, UL, KM, and KW substantively revised the manuscript prior to submission. All authors contributed to the article and approved the submitted version.This research was funded by the EU Horizon 2020 Grant: Healthy minds 0–100 years: Optimising the use of European brain imaging cohorts (Lifebrain), Grant Agreement No. 732592.The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.


Zimmerman’s migration phases  provided a framework to conceptualize women’s migration journeys. We found that women’s migration journeys were shaped by gender, with male-led migration often reinforcing gender norms. Structural and sociocultural factors (including visa status) influenced women’s sense of belonging while living in Australia, such as help-seeking behaviour and engagement in sexual relationships. Intersecting factors of gender, culture, and the migration process should be considered when designing public health interventions to improve women’s sexual health, in particular migration policies and procedures.This paper explores the intersections of migration, gender, and sexual health with Indonesian women living in Perth, Western Australia. The study was part of a larger participatory action research project to co-design an intervention to increase HIV testing in migrant Indonesian women. Unstructured interviews were conducted with adult Indonesian women ( An individual’s migration experience is characterized by unique phases pre-, during and post-migration, and upon their return. Zimmerman et al. 2011) describe the migration process as a complex, multistage cycle that can be entered multiple times and argue that public health interventions must target each stage of the cycle 1 describ.Addressing migrant health inequalities remains a global challenge ,5. For tAn intersectionality framework offers additional insights about the multifactorial impact of determinants on migrant health both pre-, during, and post-migration ,15,16. TLike gender, sexual health is a social construct, influenced by social, cultural, political, and economic factors ,22 incluIn Australia, peak organisations for sexual health have advocated for a more nuanced understanding of how migration and gender and cultural norms shape sexual health practices . Sexual This research was part of a larger study, known as Srikandi (an Indonesian folklore) to co-design a sexual health intervention with Indonesian women living in Perth . People The broader Srikandi multi-method participatory action research (PAR) project is composed of a systematic review, a content analysis, focus groups, and co-design workshops, reported elsewhere ,33. PAR Interviews were selected to complement other project components, consistent with the flexibility and reflexivity of PAR. Interviews are a commonly used PAR method, and this research provided rich insights regarding individuals’ experiences of migration, particularly around gender, sexual health, and risk. We conducted interviews with 10 Indonesian women living in Perth, WA using reflexive thematic analysis (TA). Reflexive TA supports the subjective nature of qualitative research and is often conducted by a sole researcher through an organic coding process ,40.This research was undertaken by an Australian-born female doctoral student supervised by three university-based academics . All interviews were undertaken by the first author, who had limited knowledge of Indonesia or the Indonesian community living in Perth prior to the commencement of the project and was considered a ‘cultural outsider’ . The stun = 8) and those who were reluctant to participate in a group setting. Recruitment into focus groups and interviews occurred through social media  and email lists, and word of mouth via community researchers. Selected focus group participants were then invited to take part in the interviews, based on the diversity of their experiences described during the focus group and their ability to take part in an English-only interview. Women were approached solely by the first author. To protect interviewees’ confidentiality during the data analysis, in all but one instance, community researchers did not know who had or had not participated in interviews. One participant asked a community researcher to attend the interview to provide language support. Interviews were concluded when we felt we had sufficient variation in women’s broad migration experiences; we did not believe it possible to reach data saturation, consistent with the reflexive TA procedure  See. You noticed me. I still cannot say that.”“—Student visa, 2004In maintaining “good girl” values, women held a pragmatic view of marriage. Women believed that if their husbands provided financially for them, they had to respect him as part of their marriage duty. It was accepted that men might be unfaithful to their wives, engaging in extra-marital relationships, but this was socially tolerated. This acceptance of a husband’s multiple sexual partners, coupled with a reluctance to discuss safer sexual practices and to access sexual health services, have important implications for the transmission and late diagnosis of STIs.You know, Indonesia has a history with patriarchal culture where men become a leader of the family, the decision-maker, the breadwinner, and wives should respect the husband… But at some point, there’s some value that we still keep because of our religion as well because we have to respect our husband… as long as my husband still love me, still take care of my children, still responsible to the family, so, if he has lust  with somebody else, but put the wife more priority, well, I think, that’s okay.”“—Student visa, 2016Religion was an important part of participants’ identities and most women actively engaged in religious practices  that continued in Australia. However, once in Australia, women had to navigate between their faith and the transformation of gender norms and/or sexuality. In many cases, religion in part reinforced traditional gender norms, such as sex as a duty of marriage or the value of women’s virginity. Religion, connected to culture, emphasised women having to self-police their sexuality. This was especially the case when women attended services or groups with other Indonesians, where gender norms from Indonesia were often upheld in Australia.Anticipation of returning to Indonesia (either permanently or temporarily) maintained gender norms and influenced women’s sexuality whilst in Australia. Women were concerned with how their behaviour, or attitudes, would be perceived by people living in Indonesia. This was experienced by both women who had permanent resident status in Australia and temporary visa holders. Women who had permanent resident status in Australia remained strongly connected to Indonesia. Women frequently returned to Indonesia for vacation, for business, for health, or to see family and friends , with some women describing this as having “two homes”. Some women intended to live permanently in Indonesia after a certain length of time in Australia (such as retiring in Indonesia). Being ‘permanent’ in Australia appeared to facilitate more travel back to Indonesia for legal and financial factors. For this reason, women were cautious of maintaining “good girl” practices.Women on temporary visas, who anticipated returning to Indonesia, described being wary of how their attitudes and behaviour in Australia may be perceived upon their return. “Gossip” through transnational social networks meant that women were still expected to adhere to Indonesian gender norms. Single women described concerns that gossip would reach its way back to their families in Indonesia, and the social consequences of this when they returned .For some women, time in Australia had shifted their own attitudes towards gender and sexuality. Women were supportive of Australian attitudes and policies around gender and sexuality , and weren’t sure how they would reconcile these differences once home in Indonesia. Women described anticipating missing things about Australia, like the ability to wear lipstick without fear of being seen as “hijab boobies” .This section describes women’s experiences of belonging in Australia. It is important to note that all women identified as being Indonesian, despite living in Australia, and maintained a connection to their community and culture.Some women felt that their time in Australia had made them more ‘Western’. Women used the expression of being a “banana” to describe their Asian appearance (‘yellow’), but their sense of connection or belonging to a more ‘Western’ culture (white). This notion of becoming ‘Western’ was difficult to explain but included becoming more ‘open-minded’ about sexuality , embracing new gender norms and roles , a preference for particular foods, and having good English and an understanding of jokes and slang:So yeah, and like moving here everything is so liberated and I’ve never really explored sexually and learned proper sexual health stuff until I moved here.”“—Permanent resident, 2012Women considered both Indonesia and Australia to be home, with some women frequently living between both countries. Women maintained their connections to Indonesia through social media interactions with friends and family living in Indonesia, through reading the daily Indonesian news, and by voting in Indonesian elections. However, they often separated themselves from the Indonesian community in Perth, citing differences in sexuality and gender norms between Australia and Indonesia which made it difficult to connect with other women.More than half of the women interviewed either had an Australian partner or were planning on meeting one. Women with Australian partners retold their family’s excitement that they had married a “white foreigner”. This was seen as having a higher status in Indonesia and was associated with wealth; women described other Indonesians as having “more respect” for their husbands. Women who planned on finding an Australian husband spoke about the freedom that it would provide and the opportunity to have employment. They spoke about Indonesian men expecting women to be “housewives only”, however some women wanted to have careers and felt that this aspiration would not be supported by an Indonesian man: Because for me, I think, if we are married, for one, [Indonesian husband] like take away our freedom. I don’t want to live like that.”“—Student visa, 2019Several women had relationships mostly with Australians; predominately women who had an Australian (white) partner. For women who weren’t married, they described Australian friends being accepting of sex before marriage and supportive of discussing sexual health. Australians facilitated women to explore their sexuality and reshape gender norms, while Indonesian networks were seen as less receptive towards sex. As such, women who self-reported having more Australian friends described being more proactive about safer sexual practices, supported by their social networks:Australians are super chilled and friendly and open about things. If I were to talk about things with Asian Indonesians mostly here, they tend to be a bit almost innocent like, close-minded innocent like. I would mention about the things … and they’d look at me as if I’ve committed a great taboo. Yeah, so that’s why I’m not really close to Indonesians here.”“—Permanent resident, 2012Arriving in Australia provided new opportunities for women to openly explore their sexuality. They did this by taking part in discussions about sex with Australian-based friends, participating in social media, and engaging in new relationships (particularly with people not from Indonesia). Australia was viewed as being ‘open-minded’ or liberal—women used examples of sexual health education in schools, sexualised media, legal acceptance of de-facto and same-sex relationships, acceptance of casual sexual relationships, and public displays of intimacy and affection . Women’s exposure to Australia’s more liberal approach to sexuality , challenged women’s idea of what was morally good or bad. For example, while one participant strongly identified as a Christian, she felt her decision to have sex before marriage, rather than “saving oneself”, did not affect her relationship with God. She no longer considered this behaviour as being a sin. However, for another woman, there existed tension in her decision to divorce her husband as “it is a sin” and “God hates people who divorce.”As women engaged in sex before marriage, they were exposed to new sexual risks. With limited sexual health literacy pre-migration, women relied predominately on Australian males to help negotiate contraception. They described how males emphasised concerns about pregnancy, had little concern for STIs, and disliked condoms. Women, too, were mostly concerned about pregnancy and its implications. Having a child whilst unmarried was not perceived to be socially acceptable in the Indonesian community. For one woman, her unplanned pregnancy was the predominant reason for marrying her Australian partner, despite not living in Indonesia. While STIs were considered easy to treat  and not visible, pregnancy, had very real implications for women’s ability to study, find employment, and continue their careers. Sexual health testing for women was often only undertaken when prompted by a male partner.When you have a kid, you have no freedom… when we have kid, we will lose our future. We cannot go finish our study. We cannot go working... But then with, you know, health issue (STI)… If you take your medicine and after then go check up in a doctor and after medicine, it doesn’t really like, affect your future, kind of thing? But then if you’re pregnant, it’s kinda like my future is ruined... there is always, always a moral judgment like people judge you and whatever, but then you can actually still, as a female, you can apply job and then they wouldn’t ask you for that (STI results). You get a job functioning as a human being, normal human being according to them. But then if you’re a pregnant woman? No. The doors close. At all. So you have no future.”“—Permanent resident, 2007Limited literature exists on migration, gender, and sexuality; what has been written focuses predominately on migrants’ experiences post-migration  or solelSimilar to findings relating to sexual agency amongst married migrant and refugee women by Hawey et al. (2019), migration either maintained or challenged patriarchal views of women’s sexuality and gender norms. In this research, migration that was male-led generally reinforced traditional gender roles pre- and post-migration. Pre-migration, women’s role as a ‘caretaker’ saw men have authority over decisions of when, and where, migration occurred, sometimes at expense of women’s careers or education in Indonesia. Migration to a more ‘liberal’ country like Australia, where there are fewer laws discriminating against gender, did not translate to increased power and decision-making for women. Instead, migration policies and processes often placed women as ‘dependent’ on males, undermining women’s power, consistent with what has been reported elsewhere . In doinIn examples of migration led by women, this was often done in the absence of men, and often in attempts to reshape traditional gender norms. Some women migrated to find new ‘Western’ relationships, supportive of education and employment opportunities. Australia was described as ‘open-minded’, where it was socially acceptable for women not to be married, to have sex outside of marriage, and for same-sex relationships. Australian men were seen to be more accepting of women having careers, thus providing more financial independence. Migration to Australia enabled women to explore their sexuality; however, women had limited sexual health literacy, putting them at risk of unintended and unwanted sexual health outcomes. Women relied on male sexual partners to help navigate contraception, which often emphasized pregnancy prevention without STI protection . As reported elsewhere , women iPrevious literature has criticized the homogenous grouping of “migrants”, without acknowledging differences between visa statuses and circumstances, and how these change over time . Visa stThere are several limitations to this study. Interviews were conducted in English, without the option for an interpreter; experiences of women with limited English may be different. Women were predominantly married with children and on temporary visas, however, this is consistent with demographic data of Indonesian women living in Perth . This reWe experienced difficulties in recruiting unmarried women, which may be due to the community-based methodology of this project and sex being considered a taboo subject, particularly among unmarried women. Though data were intended to be co-analysed, the close ties between Indonesian women and the private nature of the discussions made it challenging to share transcripts from interviews with community researchers. To manage this, the researcher broadly described emerging themes with community researchers and further refined them with the academic team. Being a cultural outsider, it is likely that the researcher has made assumptions about Indonesian culture, or “Westernised” concepts—this may have been mitigated by the researcher’s close connection with community researchers throughout the research. While a cultural outsider, the researcher may be considered an ‘insider’ given her strong connections to the Indonesian community researchers and participants—this may have deterred women from sharing their experiences.A community-based approach is a strength of this project. The researcher had previous contact with most participants, which may have enhanced trust in the researcher and their credibility to conduct the research, potentially eliciting more detailed responses from participants. Interviews were informal and unstructured, and of considerable length—this allowed the researcher to develop rapport with participants and better explore women’s experiences.The use of interviews after focus groups provided women with the opportunity to reflect on what was shared in a group setting and prompted discussions on what was agreed or disagreed with. While it is beyond the scope of this article, we reflect that women sometimes disagreed with or contradicted what was initially said in focus groups—perhaps suggesting the influential role of social desirability bias in close communities.Our findings suggest that migration influences, and is influenced by, gender, and may work to reaffirm or challenge traditional gender norms and roles for migrant women. We found that a temporary visa status often reaffirmed traditional gender roles, placing women dependent on men, with implications for sexual health. Migration policies and procedures, and their impact on women, should be reviewed. We found that circumstances of migration and anticipation of return influenced sexual health attitudes and behaviour. Women maintained gendered norms where migration was male-led or return to Indonesia was anticipated. Women-led migration enabled new intimate relationships, but often in the context of limited sexual health literacy. Findings indicate that greater consideration of migration, alongside visa status, is needed in public health interventions. For example, interventions that utilize ongoing social networks between countries. More attention is needed on addressing the structural and sociocultural factors of migration that impact sexual health outcomes.