Background: Some subjective symptoms may be reported at all stages of Lyme borreliosis (LB) and may persist for several months after treatment. Nonspecific symptoms without any objective manifestation of LB are sometimes attributed by patients to a possible tick bite. The aim of our study was to explore the perceptions, representations, and experiences that these patients had of their disease and care paths. Methods: We performed a qualitative study through individual interviews (October 2017–May 2018), based on grounded theory, following the COREQ checklist. A balanced sample of patients with diverse profiles was recruited at consultations with general practitioners and infectious disease physicians. Results: Twelve patients were interviewed. Data saturation was reached at the twelfth interview. For codes, 293 were identified, and classified into 5 themes: (1) the experience of disabling nonspecific symptoms, especially pain, causing confusion and fear, (2) long and difficult care paths for the majority of the patients, experienced as an obstacle course, (3) a break with the previous state of health, causing a negative impact on every sphere of the patient’s life, (4) empowerment of the patients and the self-management of their disease, and (5) the strong expression of a desire for change, with better listening, greater recognition of the symptoms, and simpler care paths. Conclusions: This study allows for the understanding of a patient’s behaviours and the obstacles encountered, the way they are perceived, and the necessary solutions. The patients’ expectations identified here could help physicians better understand the doctor–patient relationship in these complex management situations, which would reduce the burden of the disease. The current development of specialised reference centres could help meet the patients’ demands and those of family physicians. Lyme borreliosis (LB) is the most reported tick-borne infection in North America and Europe ,2. In FrBorrelia burgdoferi sensu lato, transmitted by Ixodes tick bites ways tired, tired (...) tired, tired’.P3: ‘[W]e kept doing the analyses, we didn’t understand.’ P5: ‘It’s the chameleon symptom again’. P9: ‘Several times I said to myself: “But my poor girl, but it’s you who is doing this to you!”’P1: ‘When you list all the symptoms of Lyme, it’s (hesitation), it’s obvious.’ The patients expressed a feeling of fear of unpredictable flare-ups, of not being cured, etc., P7: ‘I was afraid of not knowing how I would end up’.As soon as the LB hypothesis was mentioned once in the course of their illness, the patients linked all their symptoms to it. P5: ‘It’s impossible to destroy because they hide, and they proliferate and you have to keep attacking’. LB was seen as inevitable; sometimes, as necessary. P3: ‘I tell myself that it’s that I must get sick and that is going to bring me something’.P5: ‘My GP, I am reluctant to ask him, he doesn’t want to believe me’. P1: ‘They don’t listen, (...) they look at everything medical, and as long as the tests are negative, they say that you have nothing’. The absence of consensus on recommendations at the time of the study has reinforced the feeling of abandonment by the scientific community.The lack of explanation was attributed to a lack of knowledge, interest, or consideration from the physicians, and seen as a barrier to diagnosis. P3: ‘I went for multiple tests for months and months that didn’t find anything. I think I must have been to five hospitals (hesitation), about fifteen doctors’. Some patients turned to more attentive ’hidden’ (P3) doctors, at high cost, with uncertain results. P1: ‘Here I am at 22,000 euros for a treatment in Germany (...). It has already given me an answer, but it’s not enough to have an answer, the body must also be healed’.P7: ‘I only go to Dr X. now’. The announcement of the diagnosis put an end to the doubt. P7: ‘I was free, we had found what was going to bring me back to my life’.After a long struggle, several patients met competent physicians, who provided answers, within the regular healthcare system. Younger physicians seemed more attentive. Coordination of the care path by a doctor, whether a general practitioner (GP) or an infectious disease specialist, seemed to be crucial to the treatment process. P7: ‘When you are hyperactive like me and you suddenly see yourself diminished on a couch like that’.P1: ‘[W]e made an extension downstairs, because I could no longer climb the stairs (...) I have my husband who has always been there ’.At the professional level, the patients reported absences linked to multiple medical consultations, repeated leave from work, etc. Activities were impacted by the unpredictability of the symptoms, leading to the feeling of being overwhelmed by the disease. The patients described either a lack of understanding from their relatives, or unconditional support, sometimes with the family adapting to their condition. P2: ‘There is contact with other people who have been, if you understand, affected, and who understand the disease’.P3: ‘[W]e read a lot of books, and from there we understood what it was, and so we were able to identify it’. There was mistrust of information on the Internet, in contrast with information from associations or scientific articles. Often the diagnosis had been mentioned by a knowledgeable relative, or by the patient himself or herself.Some patients were informing themselves, until they felt they were experts. ‘[begged]’ (P5) their doctor for antibiotics, and others consulted ‘hidden’ doctors prescribing various long-term antibiotics treatments. Those seeking relief described the lack of alternatives, which had ‘[forced]’ (P3) them to continue for fear of recurrence. Others preferred non-drug approaches. P3: ‘[T]he Lyme specialist (...) gave me three months of antibiotics, and there I almost lost my life once a day (...) we went all the way, but in the end we said no, we’ll see about something natural’.Some patients self-medicated, others P3: ‘You don’t necessarily get it from tick bites; it can be passed on from generation to generation’.P9: ‘[T]he doctor was great, because she actually listened to me, (...) she even heard me’.The patients accepted that the diagnosis could be long and difficult, but they did not accept the fact that no one listened to them, which was their main barrier to care. The experience of being listened to attentively by a doctor was the main helping factor. P5: “I am always happy if we can spread the knowledge of this disease, about which so little is known’.P5: ‘At least the doctors are informed and trained, because that’s what’s incredible’. P12: ‘I think what is good about hospital X is that there is a team dedicated to this Lyme disease, they are competent people’.P7: ‘I trust the doctor completely, not the quacks’. P11: ‘[You] go on the internet, type in “Lyme disease”, and it’s (hiss) help! (laughter)’.Some patients said they were tired of the polemics surrounding LB, which they perceived as a barrier to increased knowledge. The thematic analysis of the verbatim reports allowed a model to be developed that considers the perceptions, representations, and experiences of patients with persistent symptoms in the context of suspected LB .The illness caused multiple feelings perceived by the patients: incomprehension, fear, isolation, guilt, disappointment, anger, injustice, and doom. The patients had a representation of a vicious and dangerous disease, responsible for a rupture with the previous state of health. The experience of the illness was painfully experienced with the problem of non-specific, unpredictable, and severe symptoms. Patients reported difficulty for physicians in interpreting their symptoms and a lack of listening and recognition, responsible for a difficult care path. The diagnostic announcement was viewed as a recognition of the reality of their symptoms. This experience of illness, of the physician–patient relationship, and of the care path was the driver of the empowerment of the patients: self-management of their disease, re-organisation of their way of life, and involvement in the fight against their disease. Patients wished for changes such as better and attentive listening, recognition, better medical and societal management, and improved knowledge on Lyme borreliosis and persistent symptoms.With a destructive disease, the patient sees the abandonment of his or her social role as being excluded and adopts a passive attitude towards care.With a liberating disease, the inactivity generated by the disease frees the patient from his or her burdens, allowing him or her to carry out activities that he or she had not had the time to do previously. The disease is accepted.With a ‘professional’ disease, the patient accepts the mission of fighting the disease. Inactivity becomes acceptable, freeing the patient to actively combat the disease.Herzlich proposes three types of representation of the disease: destructive, liberating, and ‘professional’ :With a In our research, all three elements of the representation of the disease were present.In France, the patient has an active role in his or her care, actively using his or her knowledge, perceptions, representations, and experiences. The doctor–patient partnership is based on making a shared medical decision . AccordiThe patients highlighted the poor training of physicians regarding persistent symptoms, as has also been shown in several studies on somatic symptom disorders ,37,38. TIn 2019, five reference centres for tick-borne diseases, as well as associated centres, had been appointed by the Ministry of Health in France. Patients that we interviewed in this study who had received care from specialised facilities were satisfied. Following a dedicated one-hour consultation that included listening, recognition of the symptoms, and a discussion of broad management strategies, these multidisciplinary facilities propose a personalised care plan, adapted to the patient’s needs, whether the patient presented LB or a differential diagnosis. All patients with suspected LB are eligible to attend at the request of their physician. The challenge is to make these new organisations better known and ensure they are understood by the GPs, who have an essential role in the early management of complex symptoms. The main expectation that GPs have for these centres is diagnostic assistance in complex cases to avoid misdiagnosis . It is iMost patients (9/12) were enrolled in hospital consultations, which means that there was a risk that only severe cases would be included. However, this specialised consultation program was known to general practitioners in the region, who referred patients to it early, and eight patients of this study did not have severe symptoms. This point is therefore qualified. Of note, 6/12 patients have had a confirmed LB in the past, and 5/6 still had persistent symptoms, possibly related to PTLDS. Nonetheless, this point is balanced as 3/5 patients presented persistent symptoms for more than 5 years, probably suggesting a differential diagnosis and not only a PTLDS. Still, the participants, all of whom were motivated to actively improve the management of LB, might not represent all patients. The setting of the study is in France and may not correspond to other endemic countries for LB, because of cultural differences but also different healthcare systems. Nonetheless, this statement is balanced by the similar results obtained in other studies from other countries such as Canada and the USA ,28,44,45To our knowledge, there are few other works on this topic. Four studies reported similar results regarding the long and difficult care pathway and the impact of the disease, giving internal validity to our study ,26,27,45The quality criteria of the international COREQ grid were observed. The interviews were carried out by a resident in general medicine (A.B.), who had never carried out an interview before. Follow-up and reformulation techniques were improved as the interviews proceeded. The interviewer did not know any of the participants. The interviewer’s medical status may have limited patients in their criticism of medical doctors and the healthcare system. This point was qualified as A.B. performed the interviews with an anthropological approach and not a medical approach. This point was clarified at the beginning of each interview with the patient. The varied profiles of the 12 patients allowed for the development of many perspectives.Manual coding of the interviews and theorising were performed blindly by A.B., A.R., and S.C. Pooling the results showed overlaps in coding of the interviews and the theorisation presented above. The triangulation of the researchers is essential for validating the results.One patient reviewed the transcript of his interview and the findings of the study, without correction.We deconstructed our preconceptions before starting the study to avoid influencing the participants. Diagnostic and treatment wandering, and patient stigmatisation, were verified by our results. Patients’ low confidence in the French healthcare system was offset by their appreciation of their coordinating physician. The feeling of fatalism linked to LB was offset by the fact that some patients believed that they could be cured if the system changed.The analysis of perceptions, representations, and experiences allows for the understanding of a patient’s behaviours and provides information on the obstacles encountered, the way they are perceived, and the necessary solutions. This makes it possible to improve patient care in essential ways. The results of our research meet this objective. The importance of a coordinated care pathway was evident, as was the need for careful listening and recognition. The fact that the importance of listening and recognising patients’ symptoms has been mentioned in several guidelines shows that the medical community is trying to meet these requirements ,34. EmphThe results of our study could be used to create a self-assessment questionnaire on the state of a patient’s health and the impact of the disease, specific to suspected LB patients, which could be used in the initial assessment, the follow-up, and the evaluation of therapeutic measures. The use of a validated questionnaire could help improve doctor–patient communication and systematically identify difficulties that patients may not have mentioned ,47.It would also be beneficial to conduct a similar research study a few years after the establishment of the new reference centres for suspected LB in order to assess their effectiveness with patients.


Provision of informal care may adversely affect health, daily and social activities of the informal caregivers, but few studies have examined these effects in relation to caregiving intensity. This study examined the predictive factors associated with the effects of caregiving roles on health, daily and social activities of informal caregivers, accounting for caregiving intensity.Data of adults aged 18 years and over from the National Health and Morbidity Survey 2019 were used. Respondent’s demographic, socioeconomic, health, and caregiving-related characteristics were described using complex samples analysis. Logistic regression analysis was performed to examine the factors affecting health, daily and social activities of caregivers, accounting for caregiving intensity.Five point one percent of adults in Malaysia provided informal care. High intensity caregivers were more likely to be actively employed and provided longer duration of care compared with low intensity caregivers. For low intensity caregiving, females, those aged 35–59 years, and those with long-term condition were more likely to have negative effects on health. Daily activities of non-Malays were more likely to be affected, while no factor was found significantly associated with effect on social activities. For high intensity caregiving, caregivers aged 60 and over, those received training and those without assistance were more likely to have negative effects on health. Daily activities of those without assistance were more likely to be affected. Social activities of non-Malays, those received training and those providing care for 2 years or more were more likely to be affected.Our study indicates that both low- and high-intensity caregivers have common features, with the exception of employment status and care duration. Caregiving, regardless of intensity, has a significant impact on caregivers. In order to reduce the negative consequences of caregiving responsibilities, all caregivers need assistance from the community and government, that is customised to their needs. By addressing the factors contributing to the negative effects of caregiving, a continuation of informal caregiving can be sustained through policies supporting the growing demand for informal care necessitated by an ageing population and higher life expectancy in Malaysia. Informal care is defined as the provision of unpaid care or assistance to individuals who need help with activities of daily living due to chronic health conditions, disability or old age . InformaThe contribution of informal caregivers in providing care rarely receives recognition and support in Malaysia , even thWith an ageing population and increased burden of diseases, informal care has become increasingly important in complementing formal professional care to meet future healthcare needs. Globally, governments are increasingly providing support for informal caregiving, which is considered part of the healthcare system . Many deA previous study conducted in Malaysia revealed that caregiving responsibilities affected the emotional, financial, social and/or physical well-being of informal caregivers , though The objectives of the current study were to: 1) determine the characteristics of caregivers based on care intensity level, 2) examine the predictive factors associated with the effects of caregiving roles on health, daily and social activities of informal caregivers providing a low-intensity level of care, and 3) examine the predictive factors associated with the effects of caregiving roles on health, daily and social activities of informal caregivers providing a high-intensity level of care.The data for this study were sourced from the National Health and Morbidity Survey (NHMS) that was conducted in 2019 . The NHMData were collected from July to October 2019 by trained data collectors via face-to-face interviews using a validated questionnaire , 28. TheInitially, the respondents were briefed on our definition of informal care – that is, care that was provided for at least 3 months and did not involve wage or salary, community service or volunteer activity. Following this, the respondents were asked to answer “yes” or “no” to the following questions: “In the last 12 months, from ... 2018 till today, did you provide care to your household member with long-term illness, elderly or disabled?” and “In the last 12 months, from ... 2018 till today, did you provide care to other than your household member with long-term illness, elderly or disabled?” For the purpose of analysis, respondents who answered “yes” to either of the questions were categorized as informal caregivers. Level of intensity of care was assessed by the question “In total, how many hours per week did you normally spend providing care to the care recipient?” The number of caregiving hours was then grouped into two categories: 1) 1–19 h, and 2) 20 or more hours.Participant demographic and socioeconomic characteristics included sex, ethnicity, age, education level, marital status, employment status, income and location . Income was calculated based on monthly household income and analysed as quintile before being grouped into three categories: 1) low income (comprised of the first quintile representing the lowest 20% and the second quintile); 2) middle income (comprised of the third and fourth quintiles); and 3) high income (comprised of the fifth quintile representing the highest 20%).Self-reported health problems, long-term conditions and self-rated health were included as independent variables related to caregivers’ health. For self-reported health problems, the respondents were asked to answer “yes” or “no” to the question “In the last two weeks, did you experience any of the following health problems such as fever, sore throat, difficulty in swallowing, running nose or blocked nose, cough or others?” Long-term conditions were defined as the presence of any non-communicable diseases  which were self-reported by the participants as diagnosed by a doctor or healthcare professional. The respondents were asked to answer “yes” or “no” to each of the following questions: “Have you ever been told by a doctor or assistant medical officer that you have diabetes?”; “Have you ever been told by a doctor or assistant medical officer that you have high blood pressure?”; and “Have you ever been told by a doctor or assistant medical officer that you have high cholesterol?” For the analysis, respondents who answered “yes” to any of the conditions were categorized as having a long-term condition. For self-rated health, respondents were asked to answer using a five-point scale  to the question “How would you rate your health status?” The responses were then grouped into two categories: 1) low to moderate ; and 2) high (comprising excellent or good responses).To determine living in the same household, the respondents were asked to answer “yes” or “no” to the question “In the last 12 months, from ... 2018 till today, did you provide care to your household member with long-term illness, elderly or disabled?” To determine if a caregiver had received training, the respondents were asked to answer “yes, by healthcare practitioner”, “yes, by other than healthcare practitioner” or “no” to the question “Were you trained to provide care to the care recipient?” Respondents who answered either “yes, by healthcare practitioner” or “yes, by other than healthcare practitioner” were coded as having received training. To determine if the caregiver had assistance, the respondents were asked to answer “yes” or “no” to the question “Who else provides care to the care recipient? 1) other family members, 2) domestic helper/maid, 3) nurse/other nursing professionals, 4) day-care/other institution, and 5) others such as neighbours”. Respondents who answered “yes” to any of the options were categorized as having assistance. Age of the care recipient was measured by the question “How old is (person receiving care)?” Age was initially measured as a continuous variable, in years, and then grouped into two categories: 1) 0–59 years, and 2) 60+ years. Duration of care was assessed by the question “How long have you been providing care to the care recipient?” The number of years was then grouped into two categories: 1) less than 2 years, and 2) two or more years.This study focused on the effect of caregiving roles on caregivers, with health, daily activities and social activities acting as the key outcome variables assessed in relation to the caregiving intensity level. The respondents were asked to answer “yes” or “no” to the following questions: “Have your role in providing care affected your health ?’; “Have your role in providing care affected your daily, work or school activities?”; and “Have your role in providing care affected your social activities and others?” Hereinafter, daily, work or school activities will be referred to as daily activities.p <  0.05. Univariate analyses were performed separately for each level of intensity (high intensity and low intensity) to examine the association between independent variables , and dependent variables , according to caregiving intensity level. Crude odds ratios (OR) were used to estimate strength of association between independent and dependent variables. Variables with a p-value of < 0.25 [p-value of < 0.05. The variance inflation factor (VIF) was used to test for multicollinearity, with a VIF of greater than 10 indicating a potential problem with multicollinearity [Secondary data analysis was conducted using STATA version 14 , and sample weights and study design were taken into consideration using a complex sampling design in all data analyses using the survey (svy) command. The weight used for estimation was based on the products of the inverse of the probability of sampling, non-response adjustment factor, and a post-stratification adjustment by age, gender, and ethnicity. Complex sample descriptive statistics were used to illustrate demographic, socioeconomic and other characteristics of the informal caregivers, according to caregiving intensity level. High intensity of care was defined as the provision of 20 or more hours of care per week, while low intensity of care was defined as the provision of 1–19 h of care per week , 29. Comf < 0.25  in the uf < 0.25 , 31–33 af < 0.25 –36 were inearity . The gooinearity .A total of 11,160 respondents, estimated to represent 21.3 million adults aged 18 years and over in Malaysia, were included in the analysis. Overall, 5.1%  of adults in Malaysia reported providing informal care. Tables Tables p = 0.004), long-term conditions (p = 0.032), and duration of care (p = 0.006). Variables that had a significant association with impact on daily activities of caregivers providing a low-intensity level of care were sex (p = 0.031) and ethnicity (p = 0.004). None of the variables had a significant association with impact on social activities of caregivers providing a low-intensity level of care.In the univariate analysis, variables that had a significant association with impact on the health of caregivers providing a low-intensity level of care were sex . Those aged 35–59 years were 3.75 times  more likely to have an impact on health compared to those aged 60 and above. Those with long-term conditions  had a higher likelihood of having an impact on health compared to those without. In terms of impact on daily activities, non-Malays  were more likely to be affected than Malays. No variable was found to be significant for impact on social activities of caregivers providing a low-intensity level of care.p = 0.013) and had assistance (p = 0.037). The only variable that had a significant association with impact on daily activities of caregivers providing high-intensity care was had assistance (p = 0.042). Variables that had a significant association with impact on social activities of caregivers providing high-intensity care were location (p = 0.026), living in the same household (p = 0.032), received training (p = 0.024), and duration of care (p = 0.023).In the univariate analysis, variables that had a significant association with impact on the health of caregivers providing a high-intensity level of care were received training  compared to those aged 60 and above. Those who received training were 4.50 times  more likely to have an impact on health compared to those without training. Those without assistance  had a higher likelihood of having an impact on health compared to those with assistance. In terms of impact on daily activities, those without assistance  had a higher likelihood of having an impact on daily activities compared to those with assistance. In terms of impact on social activities of caregivers providing high-intensity care, non-Malays  were more likely to be affected than Malays. Those who received training were 4.46 times  more likely to have an impact on social activities compared to those without training. High-intensity caregivers providing care for two or more years  were more likely to be affected in terms of social activities compared to those who provided care for less than 2 years.Multicollinearity analysis revealed that all variables had VIFs of less than 5 (ranging from 1.04 to 1.50), indicating that multicollinearity was unlikely. Models were considered fit based on the AUCs of more than 0.6 for each model.This study investigated the predictive factors associated with the effects of caregiving roles on caregivers in relation to intensity of care. Our findings revealed that the effects of caregiving on health, daily and social activities of informal caregivers differed based on predictive factors and level of caregiving intensity.We found that high-intensity caregivers were primarily actively employed and provided care for two or more years. Previous studies , 22, 39 Published studies reported that caregiver demographics such as sex and age were associated with negative impacts on caregivers , 40, 41.Malaysia is a multiracial nation with varied cultures, with Malays forming the largest ethnic group in the country with 69.6% of Malaysia’s population, followed by Chinese, Indians and others . This stOur study showed that low-intensity caregivers with long-term conditions were more likely to suffer from health impacts. A previous study found that caregivers often neglect their own healthcare needs due to the caregiving process, which may take a toll and lead to worsening of pre-existing conditions . Since tOur study found that caregivers providing high-intensity care for two or more years were more likely to suffer social strains compared to caregivers who provided high-intensity care for less than 2 years. Multiple years of filling a caregiving role have been associated with a greater burden among caregivers . ProvisiRather surprisingly, the current study found that the health and social activities of trained caregivers who provided high-intensity care were more likely to be affected than caregivers who had not been trained. One may postulate that, although training facilitates the provision of quality care by promoting knowledge and care techniques for caregivers, it does not explicitly translate to caregivers’ health and social activities. Caregivers require both knowledge and skill to provide care, and training caregivers has been demonstrated to be beneficial in the successful carrying out of their responsibilities . As suchDemographic and socioeconomic characteristics, as well as other factors, can moderate the effects of the other variables on caregivers’ health, daily activities and social activities. Previous studies found that coping and social support moderate the negative effects of the caregiving role, as it acts as a buffer to mitigate the impact of care stressors on the caregiver –71. The Support for informal caregivers utilizing services and expertise for the provision of integrated social care is insufficient in both the public and private sectors in Malaysia , 5. Our With a population that is ageing with an increased prevalence of comorbidities and disability, demand for long-term care in Malaysia is increasing as well. Informal care is considered an important component and valuable resource for long-term health and social care . A conceOur study had several limitations. As NHMS was a cross-sectional study, causal relationships between caregiving intensity and impact on health, daily and social activities could not be determined. Another limitation to consider is the lack of depth in the topic as the questions from the NHMS were general in nature. Other variables such as the severity of the care recipient’s health condition, use of respite care and presence of any short breaks from caregiving roles were not included in the study, which deters possible associations with the studied predictors. This suggests that more detailed research that includes these variables and future exploration into the causal relationships of informal care and caregiving intensity are justified. Additionally, no previous research was conducted in a local context pertaining to the effects of caregiving intensity, which made comparison impossible. However, this study provides relevant evidence on the current situation of informal caregivers in Malaysia.Despite these limitations, the main strength of this study includes its large sample size, which involved a nationwide population that enabled the generalisation of results for Malaysia. As this was the first national study on informal caregivers conducted in Malaysia, the findings from this study could help enrich discussion pertaining to informal care and guide future programmes, policies and potential research.Our study indicates that both low- and high-intensity caregivers have common features, with the exception of employment status and care duration. Caregiving, regardless of intensity, has a significant impact on caregivers. In order to reduce the negative consequences of caregiving responsibilities, all caregivers need assistance from the community and government, including but not limited to information to aid understanding, skills to better carry out caregiving roles, respite to enable participation in other activities, and financial support that is customised to their needs. Informal caregivers are valuable resources in the provision of long-term health and social care. As such, by addressing the factors contributing to the negative effects of caregiving, a continuation of informal caregiving can be sustained through policies supporting the growing demand for informal care necessitated by an ageing population and higher life expectancy in Malaysia.


From nurses to dentists and doctors, caregivers undergo significant initial and life-long training. This training, however, rarely addresses the subjective side of their practice, especially the lived experience of caregiving. Better understanding this experience can nevertheless help to build fruitful relationships with patients. We focus on what it is like to take care of someone else and attempt to outline an encompassing “phenomenology of care”.We investigate the lived experience of caregivers during their first meeting with a patient. We rely on micro-phenomenological interviews, which offer fine-grained, first-person descriptions of someone’s holistic experience in a given situation.We show how the subjective experience of meeting a new patient can be structured with i) categories of micro-experiential acts , ii) the scopes of these acts, which involve inner and outer perceptions, various elaborations, regulations and interventions and iii) a range of experiential modalities.We highlight the richness of lived experience, and what all caregivers intimately share beyond the frame of their respective professions and practices. We discuss our results in terms of methodology, finalized and productive activities, pre-reflective aspects, and reflexive practice. The ongoing COVID-19 pandemic has shed a crude light on the need of strong health care systems and what may happen when they are institutionally, and more broadly socially, neglected. Some Legrand,  have notIn Western countries , caregivers play a key societal role. This role can, however, be downplayed in the sense that caregiving is actually so present and internalized that it becomes invisible. Indeed, in these countries, constant health care starts at the first moments of life for most individuals. This is particularly the case in France where our study took place. The COVID 19 pandemic has clearly revealed that caregivers were impacted by increased workload, overexposure to infectious risk, reorganization of care and routine changes. These challenges have been amplified by isolation and loss of social support, and have overall fed a feeling of one’s role being minimized . Engel thus connected biological, psychological, and social factors into a complex causal system. In this way, he contributed to countering the dehumanization of medicine and the infantilization of patients. This perspective has recently been reinforced, for instance, with the development of therapeutic education for patients , they do not convey only a sensory feeling but are directly related to the therapists’ pre-reflectiveThe majority of caregivers receive both theoretical and practical initial instruction , and many of them undergo further training throughout their careers. More often than not, little room is offered to lived experience in situations of care, whether it is the patient’s experience or the caregiver’s. Anthropologist Byron Good looked at how caregivers accommodate (or not) the patient’s experience. His work on the construction of health professionals shows how medical students at the university develop their listening style—especially regarding patients’ voices and illness narratives—and their attitudes over the years of their curriculum Good, . For insThe previous results suggest how the activity of meeting someone and the corresponding subjective experience may take shape and unfold over time. They also promote healthcare workers’ reflexive practice. This reflexive dimension is at the heart of the analysis of practices Henry,  and can Studying lived experience “from within” requires a specific epistemology. Phenomenological approaches make a difference between perspectives in first, second and third person by separating the perspective of the subject who lives the experience from the perspective of another subject, such as the researcher  is not a sufficient condition for first-person perspective taking: You can also have an objective, third-person view on your headache. […] What is needed is a difference not in terms of the epistemic object but, rather, in terms of epistemic access – even if it may turn out to be necessary to refer to specific epistemic objects in order to clarify what the specific kind of access is. The decisive point seems to be that there are certain features of oneself that do require a specific kind of epistemic access’ , with carefully chosen questions, assists and guides the interviewee (named A) as s/he recalls and revisits a past experience. Under the interviewer’s guidance, the interviewee is led to suspend her/his judgement—a process known as the Husserlian epoché is thus what allows the interviewee to access her/his past lived experience. Of paramount importance is the open and non-inductive nature of the questions, which results in a guidance that is attentional rather than orienting the content of the answers. Concretely, when exploring a perceptual episode, the initial question “what do you perceive?” may for instance, be more adapted than the question “what do you see?”, as it does not imply the perceptual modality that was then dominant for the interviewee. More generally, perlocutionary effects of the interventions are controlled as much as possible to prevent the possible induction of distorted or false memories ; and third, what the interviewee tells the interviewer. Interventions thus mostly consist in recurrent question frames, with a limited set of verbs and temporal articulations, e.g., “ what do you feel/perceive/do/hear”, “[at that very moment/just before/ …] how do you know that?”, “how does it feel?”, “what do you do/pay attention to/feel [when you + verb of action]?” etc.The aim of the micro-phenomenological interview is to collect detailed descriptions of a singular lived experience. These descriptions aim to be holistic in the sense that the various components of experience, from cognitive operations and physical actions to sensations and emotions, are considered and deemed of interest. What are sought are specific descriptions of what was experienced, and not generalizations derived from repeated situations and habits, nor opinions. This explains in particular why “why” questions are disregarded, as they tend to induce unwanted comments and opinions. Interviewers look for both fragmentation, which corresponds to the collection of the diachronic succession of microscopic experiential events that compose larger-scale experiences, and for qualitative expansion, which points at the various facets in synchrony of the experiential events. The pre-reflective aspects of the experience under study, i.e., the part of it that remained below the threshold of consciousness, are given special attention since they may contain useful information regarding what was lived and how it unfolded. This includes in particular the possible sources of errors made during an activity or implicit aspects of expert knowledge.“I feel that she is scared” suggests a different experience from the absence of the same sense of agency in “This feeling that she is scared, that’s what comes to me”.As it targets first-person descriptions, the micro-phenomenological interview differs from third-person methods, where data is collected from an external viewpoint, often considered to be objective. In micro-phenomenology, words are endowed with considerable trust, as they provide (the only) access to subjective experience. While it is not always possible to assess the extent of the semiotic transformation implied by the wording of a “wordless” experience, it makes sense to assumes that different choices of words point to subtle differences between experiences: the presence of a sense of agency in A total of 13 caregivers from various care professions were interviewed: two speech therapists , two family medicine practitioners , one dentist , one physiotherapist , three psychotherapists , four nurses . All participants were native French speakers. The interviews took place in the interviewee’s workplace or in a meeting room located in one of the authors’ research institutions. No strict control was enforced for variables such as the interviewee’s gender or the match or mismatch between the interviewer and interviewee’s genders.This study follows the Helsinki Declaration  introduce the aims, methods and institutional framework of our research, including data collection for the sole purpose of research and data anonymization, ii) inform the interviewee that s/he could stop the interview at any time for whatever reason, iii) explain the interviewee that s/he was entirely free to choose the first meeting s/he was most interested in, and to keep elements of this meeting for her/himself if s/he felt the need to, and iv) answer any possible question. We obtained full and explicit oral consent to participate in the study before starting the audio-recorded interviewing process. No information regarding the identity of the patients that had been met by the interviewees was ever collected, and no name was ever mentioned.We chose not to ask for a written consent, as we feared this more formal approach could increase the asymmetry of the relation and lead the interviewee to watch her/his words more restrictively. Micro-phenomenological interviews indeed require a lot of trust, as the interviewee usually discloses intimate experience s/he is not used to share. Increased formality could also have led caregivers to act as professionals even in front of the interviewer.Each interview lasted between 45 and 90 minutes. The total duration of the recordings was 14 hours, 7 minutes, and 42 seconds. 10 or the 13 recordings were fully transcribed. The 10 micro-interviews proper lasted together 552 minutes and 41 seconds, with a mean duration of 55 minutes and 16 seconds and a standard deviation of 14 minutes and 57 seconds. Their transcriptions, with added information about time and numbered interventions assigned to the interviewer or the interviewee, contained a total of 117,142 words, with a mean number of 11,714 words per transcription and a standard deviation of 3,286 words. Transcriptions are available upon request to the corresponding author.Information on the educational and training background, the number of years of practice and the professional context of intervention  was also collected to provide a number of meta-data for later analysis.Upon carefully reading the 11 transcriptions, 7 were considered for further analysis.Our analytical approach to experience is qualitative and faces the epistemological and methodological challenges of all qualitative approaches. These challenges relate to the bottom-up construction, organization and selection of relevant possible interpretations of one’s raw material Saldaña,  As descrFollowing Vermersch’s initial take on how to analyse data collected from micro-phenomenological interviews  are often omitted for the sake of simplicity, although they may provide valuable information .“how did you feel?” A: “a bit nervous”] becomes [A: “(I feel/felt) a bit nervous”]. Everything that is not experiential description is presented with a specific ink colour to clearly delineate it; iv) to ease understanding, move complementary information that appears later in the transcription to an earlier statement if it clarifies and/or specifies it (in connection with vii. below); v) underline verbs pointing to the interviewee’s activity—perceptions, sensations, mental activity, speech, actions etc. —to highlight the interviewee’s commonly favoured sensorial modalities and actions; vi) cut and organize the textual content in a succession of key moments, with corresponding labels, to build a comprehensive bird view of the lived experience; vii) further reorganize the content in order to fully shift from the chronology of the interview (V2) to the chronology of the experience itself (V1); viii) delete the numbering of the interventions for the sake of readability.Below are details of our specific treatment of the transcriptions, with most steps commonly followed by researchers in micro-phenomenology: i) insert A and B in front of the uninterrupted interventions of the interviewee and the interviewer, respectively, and number the interventions one after the other for later referencing, i.e., B1, A2, B3, A4 etc.; ii) discard aborted sentences, repetitions/duplications, “uh”, indications of pauses or timing and brief interventions of agreement to increase readability ; iii) keep A’s descriptions of her/his experience and discard all other non-experiential pieces of information,, such as comments, opinions etc. Some key contextual elements can, however, be preserved if they shed meaningful light on the report of experience. For instance, interventions from B such as recapitulations can be deleted, but some key questions can remain if they usefully show how A’s attentional process is guided. Questions without which A’s answers would not make sense are recoded and appear with parentheses to prevent confusion with words actually uttered by A, e.g., [B: The result of the previous steps is called a “time unfolding” of the experience and is the basis for further analysis. In the specific case of the present study, in which A (the caregiver) is describing a first meeting with a patient, some actions of this patient, as perceived and reported by the caregiver, were kept to ease the understanding of the situation and of its dynamics. Also, some patients were accompanied, especially younger ones, and therefore the caregiver’s experience could also include this/these additional person(s).While the early stages of the process of transformation of the transcriptions are rather straightforward, later stages, and especially stages vi and vii, often require efforts and are more interpretative. It is sometimes difficult to reconstruct the chronology of the experience with confidence as the interviewing process, with the fragmenting of the time of the experience, often disconnects and disseminates temporally contiguous micro-experiential events.model of action , we initially considered the two fundamental articulations of micro-phenomenology: i) the succession of these MEP through time, i.e., their diachrony, and ii) their various dimensions at any given moment, i.e., their synchrony.At the diachronic level, we started from the model of action and its four causally related steps: i) gathering information, ii) identifying the situation (based on the information collected), iii) making a decision (after identifying the stakes of the situation) and iv) carrying out. We found that the third step was rarely identifiable as such in interviews, and was rather inferred from the fourth step onwards, as if it were in the “undercurrent” of the carrying out of action. We thus decided to drop it and consider three categories of acts—in the broad sense of the term, i.e., including perceptual acts, cognitive acts, speech acts, motor acts etc.—performed by the caregiver. We labelled these categories by adapting the terms of the model of action to better suit our verbatim, in order to remain close to the verbs most often used by the caregivers: i) “Gathering information”, ii) “Assessing” (rather than identification) and iii) “Performing actions” . We noticed in particular that assessments sometimes led to actions, but not always.Considering the various synchronic dimensions of micro-experiences led us to further devise several scopes for the previous acts. They specifically reflect the situation of care, with the caregiver and the patient as main actors. They also characterize the caregiver’s perspective on this situation. For information gathering first, regarding the source of information, we first found that the caregiver gathers outer information, i.e., outside of her/his body, but also often inner information, i.e., within her/himself. In terms of scope, while one may initially associate outer information with the other—the patient—and inner information with oneself—here, the caregiver—, we found that inner information could also be related to the other. This highlights a possibly neglected source of information in at least some medical practices. We did not, however, find outer information about oneself, although this could have been possible, e.g., when one looks at her/his facial expressions in a mirror, or hears a recording of her/his own voice, i.e., elements not accessible “from within”.In a similar fashion, we observed that assessments could relate to a variety of scopes: the caregiver her/himself, the patient, but also their relationship or the situation, for instance, the perceived mood in the environment. Finally, in terms of actions, the caregiver could either regulate, i.e., act upon her/himself, “intervene”, i.e., act on the patient, or yet do something else. the visual, auditory, and tactile modalities from the five senses—there were no instances of olfaction or taste;the extra-sensory modality, which covers perceptual experiences which do not relate to any single perceptual modality but which are perceived other than with the organs of perception;feelings, i.e., perceptions which do not overlap with the five senses;inner speech, i.e., linguistic productions directed towards oneself;(outer) speech, directed towards others;motor activity;embodied judgements. This category refers to intellectual feelings, i.e., unanalysed impressions becoming ideas, judgements, and reasoning Burloud, . These cIn addition to the previous categories and scopes of acts, we concluded to the need to specify the main experiential modality of either the gathering of information, the assessments or the actions of the caregiver. These modalities partly overlap with our five senses, but some of the latter are absent, while additional conditions were required. We thus considered:For instance, data collected outside of the body could be of a visual or auditory nature, internal information could consist in sensations, actions could consist in physical actions but also speech towards the patient or inner speech towards oneself. The previous categories and scopes of acts are quite “high-level” and do not exhaust the content of our verbatim. More precise instances of acts performed by the caregiver but also objects of attention can be provided to get a better perspective of what the caregiver may experience. We delved into these elements as a mean to flesh out the previous main dimensions of experience. By doing so, various pieces of information, assessments, regulations, and interventions can be highlighted, which are meaningful to understand both the strategies implemented by the caregiver and her/his more spontaneous reactions in front of the patient.In terms of precise instances of acts, We argue that our approach offers some benefits compared to other common approaches, for instance, the phenomenographic one. Phenomenography focuses on lived experience just like we did with the micro-phenomenological interview, but how data on this experience are collected differs. The phenomenographic method relies essentially on the posture of the interviewer—more than on her/his technique. S/he must show great empathy towards the interviewee, introduces the topic of the interview with an open question, and then lets the interviewee speak, guiding her/him if necessary. This guidance is based essentially on the researcher’s interest in the participant’s experience and openness to the answers given.In comparison, the micro-phenomenological interview relies on more precise technical choices when guiding the interviewee’s attention. Its key advantage is that it gives access to the pre-reflective experience, something the interviewee has difficulty exploring on her/his own but can access under the careful guidance of a trained interviewer. In particular, it is possible to access pre-reflective micro-actions such as information gathering and decision-making, which underlie identification and carrying-out, as we have presented in the model of action cf., . These mOur contribution is an experiential study of the activity of taking care, in the first moments of a first caregiver-patient meeting. We centred our attention on the caregiver’s point of view, especially to highlight the importance of what she/he projects onto the patient within the clinical relationship.It has been shown that countertransference—a constitutive process of the clinical relationship during which arise the caregiver’s projections, ideology, feelings, past experience, etc.—is as decisive as transfer from the patient in the psychotherapeutic relationship , knows” (a psychotherapist). They also designated actions participating in the construction of a therapeutic alliance—“and then I ask him to tell me who lives with them in the house. Once he has mentioned all the people in the family, I ask him if there are goldfish, turtles, hamsters other living people” (a nurse).Like most professionals, caregivers work in the context of a finalized activity  meticulous, scrupulous, he has a very contrived way of doing things, I see that it’s a guy who has obsessive compulsive disorders”. These descriptions illustrate how caregivers pre-reflectively take information in order to diagnose. The experiential and pre-reflective dimensions of the assessment of the situation thus seem quite fundamental constituents of the finalized activity of diagnosis. In particular, in our interviews, we identified some intellectual feelings, which turned out to be embodied expert assessments, which relate to and crystallize the caregiver’s whole expertise and the multitude of situations s/he has previously experienced professionally. For instance, during a session, while one of our caregivers gathers information concerning his patient’s attitude, appearance, and silence, he also does so about his own bodily sensations: he notices his altered breathing as well as a tension behind his neck and head. He makes several assessments about the “quality of silence” and the presence of his patient, and then comes to the following conclusive intellectual feeling: “I feel something strange, I feel that something is happening to him which is a bit strange, I am telling myself there is something here which is not right” (a psychotherapist). Of course, what he “feels” is not a feeling strictly speaking but rather a summative experience in the light of Burloud’s work.The category “Assessing” that emerged from the inspection of our verbatim also relates to the notion of finalized activity. It articulates it, at least partly, with the model of action that occupies a central place in micro-phenomenology. More precisely, we have preferred “assessing” to the more general “identification”, since it corresponds more faithfully to the intention of making a diagnosis expressed by the caregivers themselves. For instance, a psychologist declared “erlebnis, i.e., the fact of having lived something, as well as the set of thoughts, perceptions, and sensations that this experience has aroused. Most verbatim illustrates the productive facet of the caregiving activity, for instance, when a dentist says “I hold my breath, I breathe with my upper body, I prepare myself for everything to take longer with that person”. Secondly, experience can be considered as a material in its own right, an object worked upon by constructive activity. While productivity relates to erlebnis, this evokes the concept of erfahrung, i.e., the experience one gets from doing something, often over a long period. An explicit illustration of how a caregivers’ knowledge manifests itself experientially is given by the example of a doctor who reported “That’s where I start to look a little at semiology, like ‘how does he move?’, at analysing it. It’s more of a global situation, like a compilation of patients who had the same mode of movement, a sum of clinical cases”. It is worth noticing that during micro-phenomenological interviews, the interviewee describes her/his specific subjective experience, lived at a particular moment, which corresponds to the erlebnis. But when s/he describes an experience that corresponds to personal knowledge, this also concerns the erfahrung, as it occurs in the erlebnis, e.g., “I immediately think of technical observations. I make connections with the kids I’ve had to meet; I think of another patient I knew when she was the same age and with whom I loved to work” (a speech therapist).Any finalized activity is simultaneously “productive” and “constructive”. It is productive since it is focused on the accomplishment of a project, according to the characteristics of the situation. It is also constructive since it is involved in the development of external and internal resources—such as instruments, skills, concepts or value systems  possibly hidden behind the explicit motive for consultation, etc. We think that such considerations could help to shift from sometimes contrived and administratively constrained meetings to more qualitative and beneficial encounters.Some caregivers  are trained to stay aware during the session of all that is happening in the relationship: all that they notice with their patient but also all that they feel, think, experience in relation to their patient—which has been conceptualized under the term countertransference in psychoanalytically-inspired psychotherapies. Our study shows that similar projections onto patients do, in fact, occur within all caregivers. For instance, a nurse told us “A phenomenology of taking care is to be framed in the context in which caregivers’ work and experience pressure to perform from their institutions. The environment of a first meeting does not suppress how socio-economic variables affect clinical practice in many countries today. Caregivers meet patients within a hyper-regulated health system, which is dominated by capitalistic principles and conditioned by the “tyranny of bureaucracy” Dejours, . This leThe Covid-19 pandemic has exposed the deleterious effects of this system, and how caregivers often support others at the expense of their own wellbeing. In their phenomenographic study about the presence of health care professionals during their encounter with patients, Osterman and Schwartz-Barcott  showed tIn our opinion, an answer to the previous issues, besides decreasing the overregulation and bureaucracy-induced stress, is to support caregivers through reflective practice so that they can express their sensations, feelings and thoughts about the care provided, beyond technical aspects and relational considerations. This is necessary both for the maintenance of a certain quality of care and for the caregivers’ own health. Importantly, it can be facilitated using analytical data from an experiential approach as we have proposed. Knowledge arising from experiential research indeed enhances a holistic understanding of caregivers’ practice and expertise. It can show in particular how the finesse of this expertise is actually nestled in the folds of their pre-reflective activity. Highlighting this important aspect carries implications for future training in clinical practice and suggests finding more opportunities and space for caregivers to contact with their lived experience and learn from its multiple facets. Becoming more aware of how and why one reacts in front of a patient, understanding retrospectively why a moment decision was taken or a quick judgement was made, can help to fine-tune one’s behaviour and expertise. In short, reflectivity can enhance reflexivity. Beyond that, it may also assuage a caregiver’s need to find out who s/he truly is in front of a patient.We have tried in this paper to better understand what is at play in caregivers’ daily practices with their patients, in particular when it comes to the establishment of both a diagnosis and a therapeutic alliance—which are at the core of the finalized activity of caregiving. Relying on micro-phenomenology and the explicitation interview, we have especially investigated the subjective experience of taking care of someone else in the first few moments of the first meeting. We have highlighted how the caregiver-patient relationship is structured experientially, notably via micro-experiential phenomena that we have described at the diachronic and synchronic levels. We have attempted to organize these phenomena with categories of acts, scopes of acts, and experiential modalities. At a finer-grained level, we have identified a number of objects of attention and acts. What emerges from this approach is the importance of gathering not only outer but also inner information about the patient, of the multiple factors involved in assessing this patient’s case besides direct observation and listening, and of silently regulating one’s activity. The pre-reflective mode of consciousness plays here an important role, which can only be revealed with a first-person approach. In front of the challenges faced by caregivers, these results suggest developing a reflexive practice which includes what the reflective study of lived experience has to offer.


Pre-exposure prophylaxis (PrEP) is a medication that prevents HIV acquisition, yet PrEP uptake has been low among people who inject drugs. Stigma has been identified as a fundamental driver of population health and may be a significant barrier to PrEP care engagement among PWID. However, there has been limited research on how stigma operates in rural and urban settings in relation to PrEP. Using in-depth semi-structured qualitative interviews (n = 57) we explore PrEP continuum engagement among people actively injecting drugs in rural and urban settings. Urban participants had more awareness and knowledge. Willingness to use PrEP was similar in both settings. However, no participant was currently using PrEP. Stigmas against drug use, HIV, and sexualities were identified as barriers to PrEP uptake, particularly in the rural setting. Syringe service programs in the urban setting were highlighted as a welcoming space where PWID could socialize and therefore mitigate stigma and foster information sharing.The online version contains supplementary material available at 10.1007/s10461-021-03488-2. People who inject drugs (PWID) can benefit from pre-exposure prophylaxis (PrEP) to prevent HIV . The BanIn 2019, injection drug use accounted for 2.3% of new HIV diagnoses in New York City, and men who have sex with men who also inject drugs accounted for 1.5% . In IlliThis study sought identify barriers to and facilitators of PrEP use among rural and urban PWID. We use the PrEP care continuum , 32, whiHIV is socially constructed , 36, socImportantly, when medical interventions  are developed disparities widen , 41. ForThis study focuses on stigma due to drug use, sexualities, and HIV as a fundamental cause of PrEP disparities. Drug use stigma permeates US society in policies criminalizing drug use and administering drug treatment as well as through public stigma in stereotypes and actions toward people using drugs . Once pethrough interactions and institutions  on a commercial. I got to watch a lot of TV in prison… it's pretty, uh, pretty gay commercial.Paul points to the fact that the advertisement was likely targeting gay men . I heard about that.The majority of NYC participants had heard of PrEP (30 out of 39). Similar to Illinois, participants in NYC saw PrEP on television commercials and other advertisements. However, participants saw advertisements and flyers in harm reduction settings, such as the SSP, and many talked with peers and/or in formal settings about PrEP. For example, when asked if he had heard of PrEP, Rob, a 51-year-old Hispanic man in NYC, said:The NYC SSP offered support groups covering varying topics. NYC participants mentioned these groups as places where they were able to gather and socialize, as well as where they could obtain a free meal. Unlike participants in Illinois who mainly gathered information about PrEP from advertisements on television or radio, and had no other information source, participants from NYC talked about a combination of advertisements and conversations about PrEP, highlighting the importance of having a physical location where they could form community and exchange information. This combination increased PrEP awareness and for some began the process of developing knowledge about PrEP.…a pill that you can take. People with HIV, um, a pill that you can take every day, you know. But I didn't even think to ask him either because there was no cure for AIDS. So why would you, why we taking a pill?Another participant, Alex, a 26-year-old white man, asked the interviewer, “does it help with people who have it [HIV] too?” When we explained that PrEP was for people who were HIV-negative Alex said “Ok, so no, I didn’t know how it works.”No participant in Illinois accurately describe PrEP. A common misconception was that PrEP was a drug exclusively used to treat HIV. Sheila, a 39-year-old white woman, who was informed about PrEP from the SSP, seemed to think PrEP was a pill for people who were HIV-positive. Sheila told us PrEP was,Uh, it's like the birth control that you take the night before I guess, kind of. Uh ... I don't know.While some participants thought PrEP was a pill to treat HIV, others understood it as prophylaxis and compared it to birth control. Most did not articulate a need for continued use before exposure to increase efficacy, which is recommended . For ex…it's a medication that helps you, it protects you from getting the HIV virus… Yeah, like a cocktail. You have to get it right away. Let's say this person shared needles with this one, and you have [to] go to your provider within I believe 42 to 72 hours in order to get that medication.NYC participants were better able to articulate what PrEP was; however, sometimes their knowledge was mixed or incomplete. Often, the inaccurate PrEP knowledge was because participants had only heard about PrEP through advertisements. Some participants conflated PrEP with post-exposure prophylaxis (PEP). For example, Lexi, a 42-year-old Hispanic woman said,I heard you have to be HIV negative in order to obtain it, to get it. You take it daily and it does not prevent you from STDs and anything else. It's basically just for HIV.Despite some participants having inaccurate PrEP knowledge, many NYC participants articulated a clear understanding of PrEP. Better understanding was mostly among participants who received PrEP knowledge from multiple sources, including formal in-person conversations about PrEP in healthcare settings and mostly at the SSP, highlighting the importance of social infrastructures for PWID. For example, Jean, a 53-year-old Black woman who became aware of PrEP in a formal training session at the SSP said,Willingness to take PrEP was similar in both locations. About half of the participants indicated that they would be interested in taking PrEP. The main reason for PrEP willingness was perceived HIV risk.I probably hang around a lot of people that have it [HIV].As the interview went on Elizabeth indicated greater interest in PrEP if it would be offered at the local SSP.Elizabeth, a 23-year-old Native American woman indicating that she believed HIV was in her social network. She said she might be interested in PrEP because,Because I am an IV [intravenous drug] user, and there's always that risk. I mean, even not being an IV user there's a riskOther participants focused on specific behaviors that might place them at risk for HIV. For example, Tawna, a 28-year-old white woman said she would be interested in PrEP,The hardest decision was not having a fucking needle knowing the guy next to you has got full blown AIDS and you got to do a bag because you’re going to fucking die.Jason, a 48-year-old Hispanic man in NYC who had previously had HCV and was treated for it, told us he was trying to use new injection equipment. He spoke mostly about his injection risk because at the time of the interview he did not have a current sexual partner. When we asked if he would be interested in PrEP, he said,…the way that I'm going, for a person like me, hell yeah, I would try it.Like in Illinois, NYC participants viewed PrEP as potentially viable and valuable because they were concerned that they might be exposed to HIV. For example, Cesar, a 34-year-old Hispanic man who previously was on PrEP recounts an experience where he shared injection equipment. Cesar said,Although about half of the participants in each location expressed an interest in PrEP, half did not. Reasons for not being interested in PrEP are discussed below.Lack of perceived HIV risk was the main reason for not being interested in PrEP. When participants discussed risk, they mostly referred to sexual risk. Additionally, when participants talked about their HIV risk, they often made statements or use language that differentiated themselves from people who either have HIV or would need to protect themselves from HIV. These distinctions were stereotyping and stigmatizing , and opeCurrently I’m not going for healthcare and I probably should cause I got a lot of health problems, but uh…because they look at you like you’re different, if you’re a drug addict…it’s just yet again a small town, small community.Stigma, due to drug use, sexualities, and HIV was more pronounced in Illinois than in NYC. Rural life, as PWID in Illinois described it, included a small-town feel, poverty, and a lack of available health services for participants , all of It depends where it is located at. I mean, because, I don’t have transportation as it is.Drug use stigma permeated almost all interactions for participants in Illinois who were concerned about community members knowing their whereabouts . ParticiIt's a no. I mean, I stay with the same people. I don't really go around sleeping around, I don't, I mean, I been with three women in a year, almost two years. I mean, I don't think that's that bad, you know what I mean? Especially just coming out of prison for six years straight. That's not bad, you know.Similar to John, Melissa, a 36-year-old white woman, did not feel she was at risk. When asked if she was interested in taking PrEP, like John she references sexual risks, with no mention of injection by saying,I mean, no because honestly, I don't sleep around like that.Stigma and rurality also prevented participants from considering PrEP because they did not perceive themselves as being one of “those people” who would need to prevent HIV and made stigmatizing comments due to HIV and sexuality. For example, when asked if he would be interested in taking PrEP, John, a 29-year-old white man said,“those” type of people. By doing this, participants may have convinced themselves that they were not at risk for HIV  I don’t have, thank God.” Similarly, Rob, a 51-year-old Hispanic man said “I don’t have that [HIV] either. Thank God.”I’m going to be honest with you. Most teenagers I know have Hep-C. Most men my age in this neighborhood have fucking full blown AIDS, not even HIV at this point. 34. 34 years old dude.Fear of HIV may have propelled Cesar to use PrEP because he told us that he had previously been on PrEP, but that he stopped using it because he did not go back to refill his monthly prescription. When we asked him if he would be willing to take PrEP in the future he said, “If I need it, I’ll go get it.”Responses about HIV contrasted heavily to responses to other diseases, such as hepatitis C virus (HCV), another chronic illness common among PWID. This may be because participants, given their experiences and memories about HIV, did not view HIV as chronic, but rather as deadly. For example, Cesar, a 34-year-old Hispanic man, talked about having HCV a few times and clearing it each time. Although he said he hoped to not get HCV again, he did not think of HCV as a terrible death, like he thought of HIV. Cesar said:When I first come home from prison in 2009, I was trying to get back with this lady I was with. So, I run, and get all the tests. So, I'm sitting in the doctor's office the first time I ever had the AIDS test, and she's like, "Oh, I'll be back in 20 minutes." Two hours go by, I start thinking to myself, "Oh, my God. I got it. I'm gonna go to the roof, I'm gonna jump off the roof."Josh, a 47-year-old white man, who was not interested in PrEP because he did not feel he was at risk, told us that he wanted to kill himself when he thought he might have tested positive for HIV. Josh did not talk about knowing people with HIV and seemed to harbor more HIV stigma than Cesar. Josh said,A few months ago, my boy had a surgery. He had thyroid cancer. He is actually the one that had HIV. And it was a conversation. Health-wise, as far as he was concerned. A very good friend of mine so we got into a long conversation about how he was not taking care of himself. He was not taking his meds, and he was doing drugs, and da-da. And then that came up. But he would not get back on meds, he kept going in the hospital [hospital name retracted] and they offered, actually, they actually thought that me and him were partners, and they offered me the drug. And I was like ‘this is my damn cousin, let me alone. I am not gay. I am not bisexual. I do not put myself in that position.’Joey had first learned about PrEP when a doctor tried to talk to him because, as Joey says, the doctor thought he was in a sero-discordant sexual relationship . Yet, Joey clearly states that he would not be in a relationship like that by demarcating sexual minorities as other [Although not as prominent as in rural Illinois, some NYC participants talked about HIV in stigmatizing ways even though they knew HIV-positive people. The stigma was mainly in relation to sexualities and echoes the advertisements that PrEP is for sexual minority men. For example, Joey, a 45-year-old Hispanic man in NYC said,as other .There were no participants who were on PrEP at the time of the interview in either location. However, three NYC participants had previously taken PrEP. Given the lack of PrEP uptake in our sample, we asked hypothetical questions to participants to gauge where they would like to receive PrEP care and what potential barriers to PrEP might occur. The overwhelming response that we received was that participants preferred to receive PrEP at their local SSP because of the friendly environment and trust they had at the SSP . For exaA lot more interested than taking a pill every day... because it's just easier, I don't have to carry, like right now I don't have a purse on me... I don't have to worry about them getting stolen or whatever. And- or explaining to people, you know, hey, what it is or whatever.?Participants felt getting a shot once a month was much easier than taking a pill a day and would afford more privacy. However, it should be noted that most participants indicated that they would not have trouble taking oral PrEP daily.Finally, we asked a hypothetical question about injectable PrEP by asking “If a once-a-month shot was available as PrEP would you be interested?” When presented with this option most participants indicated injectable PrEP as easier. For example, Sheila in Illinois said that she would beThis study sought to identify barriers and facilitators to PrEP care continuum engagement in rural Illinois and urban NYC. More participants in NYC were PrEP aware and better explained what PrEP was than participants in rural Illinois. We identify the fixed location SSP in NYC where PWID established community and social ties as a facilitator of PrEP. In rural southern Illinois, where the SSP was mobile, no participants accurately described PrEP; thus, none of those participants made it to the second stage of the PrEP care continuum . After we described PrEP to participants, we found that about half of the participants in both locations were interested in taking PrEP. A significant barrier to PrEP continuum engagement was stigma due to drug use, HIV, and sexualities.Past research on PWID has shown lack of PrEP awareness , 104–106In addition to stigma due to sexualities, stigma due to drug use and HIV operated as barriers to willingness to take PrEP. Stigma was more pronounced in the rural setting due to the small town sociability patterns where everyone knew each other’s activities and whereabouts and where participants faced discrimination from community members, healthcare providers, and law enforcement , 81. In One way to combat PrEP stigma is by creating sex and drug positive messaging , 113. PWAnother stigma reduction tool that would support PrEP care engagement could be packaging PrEP in important social infrastructures, such as SSPs. Research has identified SSPs as important for disseminating PrEP awareness , 65, 115Although this study highlights the importance of physical spaces for social networks to be cultivated, mobile SSPs can still spread PrEP awareness and knowledge. In the absence of a physical location, mobile SSPs could partner with community members to activate social networks to increase care continuum engagement . AnotherThere were limitations to this study. First, participants were SSP clients. Thus, the experiences of these individuals may not generalize to all PWID. Second, the International Network of People Who Use Drugs (INPUD) has raised concerns about PrEP that did not emerge in this study such as concerns about the effectiveness of PrEP in preventing HIV transmission via injection as well as concerns about resource distribution of antiretroviral therapy (ART) and the political support for allowing SSPs to exist and fund the provision of new injecting equipment if PrEP is prioritized. Future studies should explore these concerns. Third, the findings may not be generalizable to all PWID as treatment landscapes, neighborhood conditions, and structural factors likely differ by area. Fourth, this study was not able to explore PrEP continuation after PrEP uptake since no participants were currently on PrEP. Fifth, the sample sizes differ by location, however, theoretical saturation seemed to occur in both locations. Finally, interviews were conducted prior to the COVID-19 pandemic. The recent pandemic may exacerbate HIV risk among PWID , and theIn conclusion, we suggest tackling stigma as a fundamental cause of PrEP inequalities, and more generally of poor health outcomes, among PWID , 59. We Supplementary file1 (DOCX 24 kb)Below is the link to the electronic supplementary material.


The testimony of advocacy groups and patients offered strong grounds for regulatory flexibility in dealing with the unmet need for a disease-modifying therapy for Alzheimer’s disease (AD) . The U.SReduced amyloid plaques are an unvalidated and controversial measure of a drug’s action, which is one reason for the decision’s backlash. The amyloid reduction has not resulted in cognitive improvements in big trials of Alzheimer’s medication possibilities, which has made it a stumbling block for researchers. Aducanumab’s FDA approval procedure, as well as Aduhelm’s label, was both faulty. The too-broad wording merely says, “ADUHELM is indicated for the treatment of AD,” at the time of writing. The label does not specify whether patients must have Aβ pathology to be eligible for therapy, nor does it give any other information about the individuals who should get the medication. Clinicians and insurers are now faced with determining whether patients’ treatments are acceptable and essential. A lack of rigor in the approval of aducanumab for AD might result in catastrophic consequences .However, a high-ranking FDA official, Patrizia Cavazzoni, has acknowledged aducanumab’s larger impact. In a news conference, she added, “The accelerated approval process has been a very valuable instrument.” “We believe it serves as a model that may be used for other neurodegenerative diseases,” says the team. A medication that reduces dementia’s increasing impairments would be transformative for the millions of people living with AD and their care. Since the introduction of more than 20 authorized disease-modifying therapies for multiple sclerosis followed the expedited approval of interferon-β in 1993, which was based partly on data acquired by magnetic resonance imaging (MRI) that were reasonably expected to be predictive of clinical efficacy. In the aftermath of aducanumab, there’s no reason to expect anything less . As a reClinicians will face additional challenges as a result of Aducanumab. The use of biomarkers to provide an accurate diagnosis is crucial. Dose titration, surveillance for amyloid-related imaging abnormalities, and conveying realistic treatment goals will all be necessary. Aducanumab will put further strain on healthcare systems. Early identification of memory loss has not previously been a priority in medical care systems, but it now must be. New treatments are only worthwhile if they reach patients who can benefit from them. Once identified, treatment candidates will need a diagnostic evaluation and confirmation of amyloid presence by amyloid imaging or lumbar puncture with cerebrospinal fluid analysis. MRI monitoring will be required, and genotyping may be needed to assist in forecasting the likelihood of amyloid-related imaging abnormalities. Despite continued controversy about the FDA’s approval of Biogen’s aducanumab for AD, drug developers embrace the newly paved path to market for amyloid-lowering drugs.For patients, Aducanumab changed everything. It’s a hope for individuals with early AD that their illness may improve or be halted, and the inevitable descent towards insanity can be slowed. Dementia’s gradual unknowing will be postponed. Therefore, its approval is being hailed as a victory for patients. However, the U.S. healthcare system is unprepared for Aduhelm’s dubious efficacy, unrestricted market access, and high price. Being a novel treatment, it will drive up healthcare prices. Federal health programmers, commercial insurers, pharmaceutical firms, and other stakeholders will need to work together to create solutions that encourage innovation, ensure treatment equality for all patients who may benefit, and fit within inelastic budgets. Aduhelm can also cause brain swelling and bleeding, and patients may be exposed for years without the benefit of a costly serial MRI to check for them. Market access, regulation, and payment are all linked. A solution that balances expanded market access, patient safeguards, outcomes, and costs must be developed .. A recent phase II trial of an α-synuclein-targeted antibody failed to make an overall dent in the symptoms of Parkinson’s, Jankovic explains. Still, it delayed the worsening of people’s tremors, stiffness and slowness of movement. Drug-development partners Roche has since launched a larger phase II trial to look at the motor-function benefits of the drug candidate. However, in Huntington’s disease, the most advanced developed drug candidate to lower huntingtin levels is tominersen, developed by Roche and Ionis Pharmaceuticals in Carlsbad, California. But for Urnov, the failure of tominersen is a prime example of why the FDA should not approve drugs using regulatory goalposts such as amyloid plaques or HTT  analog semaglutide, is entering a phase 3 trial early this year. Inspired by studies on youthful blood components that promote brain regeneration, Alkahest and its partner Grifols are also investigating plasma exchange and plasma fractionation techniques in the clinic .Aducanumab is an alluring treatment hoping to help people with early Alzheimer’s disease live longer and healthier lives. It demonstrated the potential of science in solving severe public-health concerns and escorting in a crisis moment in human history. It is anticipated to improve the lives of millions of people with or at risk of neurodegenerative diseases. However, it is important to note that it has nothing to do with targeting the neurodegenerative mechanism of the disease. Still, it may serve as an additive therapy to relieve the burden of neurotoxicity caused by the amyloid species. In addition, any unconventional approach can intercept the process in the really early phases, when neurons are not yet irreversibly compromised are highly regarded as targeted therapies. Therefore, utmost care should be needed for future research endeavors to develop disease-modifying therapies for neurodegenerative diseases. Despite other treatments, theories have shown promise, but none has been investigated as thoroughly as Aβ. In reality, there’s enough data to back it up; however, it’s not the only story.