Sleep paralysis (SP) is a dissociative state that occurs mainly during awakening. SP is characterized by altered motor, perceptual, emotional and cognitive functions, such as inability to perform voluntary movements, visual hallucinations, feelings of chest pressure, delusions about a frightening presence and, in some cases, fear of impending death. Most people experience SP rarely, but typically when sleeping in supine position; however, SP is considered a disease (parasomnia) when recurrent and/or associated to emotional burden. Interestingly, throughout human history, different peoples interpreted SP under a supernatural view. For example, Canadian Eskimos attribute SP to spells of shamans, who hinder the ability to move, and provoke hallucinations of a shapeless presence. In the Japanese tradition, SP is due to a vengeful spirit who suffocates his enemies while sleeping. In Nigerian culture, a female demon attacks during dreaming and provokes paralysis. A modern manifestation of SP is the report of “alien abductions”, experienced as inability to move during awakening associated with visual hallucinations of aliens. In all, SP is a significant example of how a specific biological phenomenon can be interpreted and shaped by different cultural contexts. In order to further explore the ethnopsychology of SP, in this review we present the “Pisadeira”, a character of Brazilian folklore originated in the country’s Southeast, but also found in other regions with variant names. Pisadeira is described as a crone with long fingernails who lurks on roofs at night and tramples on the chest of those who sleep on a full stomach with the belly up. This legend is mentioned in many anthropological accounts; however, we found no comprehensive reference on the Pisadeira from the perspective of sleep science. Here, we aim to fill this gap. We first review the neuropsychological aspects of SP, and then present the folk tale of the Pisadeira. Finally, we summarize the many historical and artistic manifestations of SP in different cultures, emphasizing the similarities and differences with the Pisadeira. Pisadeira, a folk figure typical of Southeastern Brazil, but also found in other regions  is a dissociative state in which an individual, upon going to sleep or waking up, is unable to move . SP is a regions . We perfThe term “sleep paralysis” was coined by Sleep paralysis is associated with either hypnagogic hallucinations (that occur at the onset of sleep) or hypnopompic ones (when waking up) . Cheyne REMS is strongly associated with the vivid and richly emotional visual events experienced during sleep, which we call dreams . REMS prDespite sharing a few characteristics, there is an important dissimilarity between SP and dreams . When drAccording to … is the nightmare personified in an old man or woman. The nightmare, or the roman “nocturna oppressio,” has always been explained by the evil intervention of an incubus, a demon or a malevolent spirit. In many cultures, the nightmare – also known as the classic oneirodynia, was due to a giant or a dwarf, a terrible woman or man that, taking advantage that one is sleeping, would sit upon their stomach and pressure their thorax, disturbing one’s breathing (p. 568).pesadelo, derives from “peso” or “pesado,” which means heavy; in French cauchemar, from the ancient verb chaucer, from Latin calcare, denotes to press or to push; finally, the English word nightmare is the night demon, or devil.Pesadeira.” She has the same features of her Minas Gerais and São Paulo state counterparts, except that the Pesadeira wears a red cap. The tale tells that if someone can scrounge it, Pesadeira loses her strength and will grant any wish in return for her cap (Pisador” (Portuguese word for the one who steps on something/someone), and, differently from other regions, it is a masculine demon.In the countryside of the Brazilian states of Minas Gerais and São Paulo, the Pisadeira possesses different physical features: she is a “fat” and “heavy” Afro-Brazilian adept at stepping on the abdomen of those who sleep on a full stomach or belly up. There is also a northeastern variant name for the Pisadeira around the São Francisco River, the so-called “ her cap . In CearFrom Portugal, however, came the nightmare main elements. J. Leite de Vasconcelos, in his ‘Popular Traditions of Portugal,’ describes the origin of Pisadeira tormenting their hillbillies and rednecks. In Algarve, it is the “Little Hand-Hole Friar.” The Friar enters late at night in the alcoves, through the door keyhole. He has a red cap on his head, and straddles at ease upon the people, to assign them the worst nightmares. He goes away only when the person wakes up (p. 289). ‘..’ The nightmare is the devil, which has a cowl and a very heavy hand. When people sleep with the belly full, the nightmare puts his hand on the chest of the sleeper and leaves no possibility to shout (p. 290).’ From Portugal, of course, came the Pisadeira. But from where has Portugal received the ‘night oppressio?’ The influence of Provence on Portuguese land was long and powerful. Provencal people spread rhythms for the early verses. For Provencal culture, nightmare is an old woman, with the tricks of Pisadeira. Only in Provence and Portugal, she comes down the chimney, and goes to the sleeper chest (p. 569).The It’s a woman, this one, real skinny, got haseff’ dose real long, bony fingas with big ol’ nails! She got stubby legs, ratty hair, chin all pointed up and a nose real bent-like, bushy brows and eyes all a-glowin’... When, we finish our suppa an’ go sleep on our backs, she’ll come down from the roof an’ sit right on ya’chest, camberin’... camberin’ down... right on ya’belly! Now that’s why ya ought not let ya young-uns sleep on their backs , p. 89.Poems from the Goias alleyways and other stories – published only when she was 75 years old. In this book, Coralina makes the following reference to the Pisadeira:The Pisadeira also starred on the verses of Cora Coralina, a pseudonym of the Brazilian Goias-State poetess Anna Lins dos Guimarães Peixoto Brêtas (1889–1985). Despite her status as one of the greatest writers ever to grace Brazil, Cora Coralina had her very first book – That night it came to pass that Mrs. Jesuína was awakened by grunts, moans, almost, coming from the placemat. She scolded: “quiet, you imp, let us sleep...” All fell silent, and the night continued its spin in space and time. In the alcove, the yellow circle of the old oil lamp. The paintings of Saints, immovable on the walls. Then again, a renewed grunt and a few little moans, a thing of the underage. Once again uttered the old woman in all her nobility: “turn to the darn side, girl, that’s the Pisadeira, don’t you piss on that mat...” And then there was silence. The old woman went back to sleep, but woke up in the wee hours of the morning. “Jesuína, Jesuína.” No reply. She commented: “Tis how it goes, you fill up your breadbasket, the Pisadeira comes, won’t let you sleep, and in the morning you’re broken like hell” , p. 32.Unfortunately, Pisadeira – as well as other figures in Brazilian folklore, such as Saci and the headless Mule – is at a risk of being forgotten. Passed on from generation to generation in the Brazilian countryside, these oral traditions are losing their strength. One of the policies for the preservation of this heritage of Brazilian legends and myths is to give them their proper value .From what has been seen so far, it is possible to say that both the Pisadeira tale and SP share many features, such as a malevolent supernatural presence, feelings of chest pressure, difficulty to breath and to scream, and sleeping in supine position with full stomach. In the next sessions, we will review historical aspects of SP as well as its manifestation in other cultures.nocturna oppressio mentioned above , roughly translated as “to pounce upon someone.” Artemidorus of Daldis (2nd century) in his book Oneirocritica – translated as “The Interpretation of Dreams” – associated ephialtes with the god Pan. The horned god of the woods and flocks could have sex with the dreamer during an ephialtes, and such was viewed as a promise of a great future income ,” and concubinus, a concubine. Much like the incubus was a male demon prone to abuse women, the succubus was a female demon who took advantage of men during sleep, and the origin of its name (succubus) means “to lie under.” This positive link with the sexual act would eventually change with the arrival of the Christian era of the Middle Ages. The nightmare, or incubus  diagnosed a 50-year-old woman suffering from repeated spells caused by a  incubus . Regardiposition , just liposition .nightmare and SP. Before the 15th century, a “nightmare” was synonymous to spiritual attack, believed to be orchestrated by a witch. However, under the influence of Enlightenment, the “nightmare” became grouped under a larger category of “bad” dreams, and lost its specificity to SP characteristics . In this painting, an elf sits upon the chest of a lifeless-like woman draped in white over the end of a bed. In the upper left corner of the painting, just behind scarlet curtains, stands the ghostly head of a horse , hallucinations, and the frightening manifestation of a shapeless, or faceless, presence. The Inuit believe that the angakkuit (shamans) are the main responsible for the uqumangirniq. Although the shamans exert a benign influence by organizing activities ranging from rites of passage to the interpretation of dreams, some shamans involved in power disputes cast spells (ilisiiqsijuq) on their opponents. One type of ilisiiqsijuq consists of attacking the enemy as they sleep, since at this moment the connection between body and soul (tarniq) is fragile. If a shaman can permanently separate the tarniq from its body, that individual dies.Beyond Latin cultures,  (kanashibari) is the cultural equivalent of SP  a tall, black shadow lacking a defined outline; (ii) a red-eyed, canine-toothed being, dressed in a Khmer Rouge cloak who brandishes a knife or club; (iii) a simian-like demon; (iv) an ap – a grotesque creature embodied solely by the head of a woman and her bowels. Regarding the ghosts, when someone is killed violently, or buried without the proper funeral rites – something recurrent during the Pol Pot period – the spirit would be doomed to walk the Earth and haunt the living by showing them the afterlife state of penury.Through interviews with one hundred Cambodian refugees in an American psychiatric clinic, The Asian immigrants from the  (phi am) is a ghost that haunts subjects when half-asleep and unable to move ( (Jinn), who are malevolent spirit-like creatures ( (dukak) an evil spirit that haunts the sleep. Similarly to the Brazilian Pisadeira, the Hmong people – an ethnic group from the mountain regions of Vietnam and Laos – believe that a “pressing spirit” sits on the chest of the sleepers and tries to asphyxiate them .Sleep paralysis is characterized by body immobility, chest pressure, seeing scary figures, and/or feeling a frightening “presence,” which tend to happen during awakening in supine position. As described along this article, the interpretation of SP rebirths in different eras and cultures, such as the Greek “ephialtes”  attacks . CascudoSince the Enlightenment, the “supernatural” experiences associated to SP have been interpreted as pathological. However, there are few connections between SP and other neuro-psychiatric disorders  with theNoteworthy, there is a tendency to associate the Pisadeira and similar phenomena to a “superstition” believed by naïve, uneducated people. However, All authors listed, have made substantial, direct and intellectual contribution to the work, and approved it for publication.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.


The Dutch Ministry of Health has formulated ambitious goals concerning the use of telehealth, leading to subsequent changes compared with the current health care situation, in which 93% of care is delivered face-to-face. Since most care is delivered to older people, the prospect of telehealth raises the question of whether this population is ready for this new way of receiving care. To study this, we created a theoretical framework consisting of 6 factors associated with older people’s intention to use technology.The objective of this study was to understand community-dwelling older people’s readiness for receiving telehealth by studying their intention to use videoconferencing and capacities for using digital technology in daily life as indicators.A mixed-method triangulation design was used. First, a cross-sectional survey study was performed to investigate older people’s intention to use videoconferencing, by testing our theoretical framework with a multilevel path analysis (phase 1). Second, for deeper understanding of older people’s actual use of digital technology, qualitative observations of older people executing technological tasks  were conducted at their homes (phase 2).In phase 1, a total of 256 people aged 65 years or older participated in the survey study . Using a significance level of .05, we found seven significant associations regarding older people’s perception of videoconferencing. Older people’s (1) intention to use videoconferencing was predicted by their performance expectancy , effort expectancy , and perceived privacy and security ; (2) their performance expectancy was predicted by their effort expectancy ; and (3) their effort expectancy was predicted by their self-efficacy . In phase 2, a total of 6 men and 9 women aged between 65 and 87 years participated in the qualitative observation study. Of the primary themes, 5 themes were identified that could provide greater understanding of older people’s capacities and incapacities in using digital technology: (1) “self-efficacy and digital literacy,” (2) “obstacles to using technology,” (3) “prior experience and frequency of use,” (4) “sources of support and facilitating conditions,” and (5) “performance expectancy.” These 5 themes recurred in all 15 observations.Performance expectancy, effort expectancy, and perceived privacy and security are direct predictors of older people’s intention to use videoconferencing. Self-efficacy appeared to play a role in both older people’s intention to use, as well as their actual use of technology. The path analysis revealed that self-efficacy was significantly associated with older people’s effort expectancy. Furthermore, self-efficacy and digital literacy appeared to play a major role in older people’s capacities to make use of digital technology. The increasing use of digital technology in society requires that all citizens, including older people, have digital literacy. In the Netherlands, people are gradually forced to regulate tasks online, for example, banking or government-related issues, such as tax returns or passport applications. The same applies for health care, in which digital technologies are increasingly integrated, for example, in telehealth, in which health care is delivered remotely through the use of digital technology such as videoconferencing.On the basis of the belief that telehealth can offer a solution for the increasing number of older people with a (chronic) disease and the accompanying increasing demand for care, the Dutch Ministry of Health formulated in 2014, three ambitions with regard to the use of e-health to be achieved within 5 years: (1) 80% of chronically ill patients have direct access to (parts of) their medical record, (2) 75% of chronically ill patients and vulnerable older people who are willing and able to, actual perform self-measurements, and (3) all community-dwelling patients have the possibility to communicate via videoconferencing with their health care providers  I do nothing. I’m a “digital illiterate.” [To his wife:] You always have a note attached, don’t you? It’s not there, so I know nothing.Wife: Can you turn it on, or not?Man: I don’t know, something with green, whether it’s the right or left button. Was it something green?Wife: Just try it.Man: Nothing happens.Wife: You have to push it longer. Do you hold it the other way around?Man: Nothing happens at all.Wife: You do have to hold it longer, the red button.Man: There is nothing red at all.Wife: No, it isn’t red yet, you have to hold it longer.Participant 2, male, 81 yearsThe theme of self-efficacy occurred in a variety of ways during the observations; older people believed that they were not able to accomplish certain technological tasks (low self-efficacy), but discovered that they actually were able to do so or could do so after a small suggestion on how to proceed. Further, we observed older people who could explain very clearly how an application or device worked and were proud that they possessed the right skills, for example:I think it’s already good that I am able to open my e-mail and send e-mails back.Participant 9, female, 72 yearsAnother recurrent observation was older people who kept very strictly to the things that they had learned and stayed away from abilities outside of their knowledge. For example, one participant said the following about his email application:I never look over there, I just do everything I have learned.Participant 2, male, 81 yearsThe same participant added:Outside of that [email application], I become nervous.Participant 2, male, 81 years“Digital literacy” refers to “a large variety of complex cognitive, motor, sociological, and emotional skills, which users need in order to function effectively in digital environments” . During But I notice that I'm not so good at electrical devices, so this [task] has to go very slow. [...] Yes, I remember, I was in the store and I touched it but I did not know how it worked anyway. I actually felt like a “dummy.” And I was reluctant, but he [salesman] explained me how to put that thing on/off. He said, “try to do it.” And there are also things that I could execute at that moment, but not anymore [once at home]. And then I have to ask again how it works.Participant 9, female, 72 yearsreads emails but never responds:Within the theme of self-efficacy and digital literacy, two subthemes were identified: “task structure” and “effort expectancy.” Regarding the task structure, which is referred to in the literature as the extent to which a task is nonroutine and varied , we obseIn the past, I’ve had to type sometimes, but that’s way too difficult, so I only read e-mails. As long as I have her [his wife], she does that.Participant 2, male, 66 yearsAnother participant explained that she only uses her cell phone in specific situations:I only use it [cell phone] when I visit my son. When I sit in the train, I call my son and ask him to pick me up. But besides that, I never take my phone outside.Participant 13, female, 70 yearsWe also gained insight into the role of “effort expectancy,” defined in the literature as “the degree of ease associated with consumers’ use of technology” . Several...[in order to save a contact] I have to search a lot, but I will get it done. Please wait, this is very illogical [...]. Very illogical. I hope future devices are smarter.Participant 11, female, 76 yearsAnother example of how effort expectancy plays a role in the use of technology came from a participant who prepared himself for executing a task with his cell phone. Seemingly easy functions can already be difficult:I first have to turn it [cell phone] on. That’s always a bit tricky. Especially my wife has difficulties finding that on button.Participant 7, male, 74 yearsOlder people experience all kinds of obstacles to using technology, also referred to in the literature as “barriers” ,43, whicFurthermore, we observed obstacles in the category “limited digital literacy,” for example, unable to find the cursor (of the mouse), getting confused after updates, or not knowing how to use the internet. The third category included more personal use-related barriers, for example, prefers to read the news in the newspaper instead of on an iPad, forgets his or her password very often, or having resistance toward social media, as expressed by one participant:Wearing a personal alarm around my neck is fine with me, but [...] Facebook and whatever else there is, is another reality beyond my sensory reality.Participant 11, female, 76 yearsAdditionally, in 12 cases, the subtheme “anxiety” was identified as an obstacle to using technology. McFarland and Hamilton  use a slOne hears so much...things that can go wrong with online banking. I dedicated myself to, if possible, only do online banking when one of my two children is with me.Participant 9, female, 72 yearsAll anxiety sources mentioned above hampered the participants’ use of technology.While executing technological tasks, the theme of prior experience and frequency of use was exhibited by all participants. We observed people with much experience and little experience, as well as participants who told to have a device but reported never using it .The capacities and incapacities regarding technology use seemed to be associated with older people’s experience in the past and/or their frequency in use. Some participants said they were glad that they learned to work with computers during their working career. Others did not and had to learn everything from the start. Their limited experience hampered their capacity to accomplish technological tasks:I really don’t know how it works, I just have it [computer].Participant 14, female, 68 yearsIn several cases, participants had forgotten how to accomplish a specific task since they reported only doing it once or twice in the past.In contrast, more prior experience was clearly supportive:This isn’t really complicated, since I already have been working with that computer for 2 years now.Participant 6, male, 86 yearsAccording to the participants in this study, capacity in using technology is a matter of experience and practice.When participants had to overcome obstacles to technology use, they reached out to various sources of support. These sources of support are part of the “facilitating conditions,” defined as “consumers’ perceptions of the resources and support available to perform a behavior” . A varieSeniorWeb is really important, but I wonder if people take that step. [...] For me, it’s amazing to see that, myself included, my family, brothers and sisters encounter the same [obstacles].Participant 8, male, 65 yearsFurther sources of support that were mentioned by our participants were manuals, helpdesks, installers, and persons, often including partners, friends, children, and grandchildren.Children and grandchildren play a significant and diverse role in the use of technology by older people; they appeared to function as a motive or incentive to start using technology, for example, since technology offers the ability to communicate more easily (and over distance). Subsequently, children help their parents in purchasing, installing, and using technology. The active support of children solves issues in the use of technology on the one hand while on the other hand, it might cause older people to maintain their lack of technology skills. When they struggle with technology, some older people wait for their children to solve it:I’m not good at saving a number. My grandchildren always come to do that.Participant 14, female, 68 yearsAnother example came from a woman who was asked to send an email to multiple persons:My children once said, “just put all those names here” but I don’t have a clue of the meaning of all this. .Participant 9, female, 72 yearsThe same participant explained her motivation to purchase a computer:I had to do financial matters, and at that moment, I took a computer.In this study, 7 significant associations regarding older people’s perception of videoconferencing were found. Older people’s (1) intention to use videoconferencing was predicted by their performance expectancy, effort expectancy, and perceived privacy or security; (2) their performance expectancy was predicted by their effort expectancy; and (3) their effort expectancy was predicted by their self-efficacy. In other words, whether older people intend to use videoconferencing depends on their expectations of the usefulness of this application, their expectations of how easy it is to use videoconferencing, and their confidence whether their privacy and security is protected when using videoconferencing.Self-efficacy did not appear to be a significant predictor of older people’s intention to use videoconferencing. However, the multilevel regression analysis made it possible to identify multiple associations within the path analysis and showed us that self-efficacy significantly impacts older people’s effort expectancy of technology, which in turn impacts older people’s intention to use videoconferencing. Since self-efficacy and effort expectancy can be quite comparable , we execSelf-efficacy and digital literacy was also identified as the most prevalent theme during the observations in phase 2. Four additional themes were identified that could help us understand older people’s readiness to receive telehealth: “obstacles to using technology,” “prior experience and frequency in use,” “sources of support and facilitating conditions,” and “performance expectancy.”Two of the themes, self-efficacy and performance expectancy, were also part of our theoretical framework and path analysis on intention to use technology. Additionally, the construct effort expectancy was observed within the theme “self-efficacy and digital literacy.” The qualitative results indicate that older people’s use of technology is associated with the themes we found. It is interesting to test in future research whether these themes  are also associated with older people’s intention to use. In our path analysis, frequency of internet use did not appear to be a significant predictor of intention to use, but perhaps (prior) experience with other types of technology does have a significant association with older people’s intention to use. Additionally, older people’s motivation to start using or purchase technology can substantially differ, illustrated by one of our participant who explained her motivation to purchase a computer: “I had to do financial matters, and at that moment, I took a computer.” This finding is in line with Peek  who concRegarding the predictors we found, effort expectancy and performance expectancy were already known from the TAM  and UTAUContrary to the findings of prior research -53, “subWithin the theme “sources of support and facilitating conditions,” the significant role of family members was identified. This observation is aligned with the prior research of Luijkx et al . In thisOur sampling strategy might have been a study limitation. Since the total number of potential respondents was not known, we could not measure a response rate and may have thus missed this indicator of representativeness. Only for those respondents who were recruited via the e-panel (n=186) we could, resulting in a response rate 9.30% 186/2000), which is low . In the 000, whicThe online respondents of our study represent the largest part of our sample (72.3%). As a result, our sample was biased by a higher percentage of internet users compared with the general Dutch population of older people, in which 74% of the 65- to 75-year-old population and 34% of the population over 75 years of age occasionally used the internet in 2012 . In our We believe that our study strength lies in the triangulation of two methods, which helped us to gain a deep understanding of the often-used constructs in technology-acceptance models. Moreover, we noted the added value of the observation method (instead of interviews) to gain an understanding of technology use. With 9 of the 15 participants, a situation occurred in which they misjudged their digital skills; they overestimated or underestimated their skills, and as a result, they could or could not complete a technology task in contrast to their prior expectations. Our method of observations was not hindered by this form of recall bias, whereas it might have spoiled our results if we had chosen a different method, such as interviews.Older people’s intention to use technology is directly predicted by their effort expectancy, performance expectancy, and perceived privacy or security. Furthermore, self-efficacy and digital literacy appeared to play an important role in the day-to-day use of technology by older people and increase their effort expectancy. Therefore, we recommend addressing these concepts in technology training for older people to be given by nurses or other educators. We believe that in starting with increasing older people’s self-efficacy, their effort expectancy and intention to use will follow. In the literature, performance accomplishments, which are successes that raise mastery expectations, are seen as the strongest method of increasing self-efficacy . As mentThe second strongest source of self-efficacy is vicarious experience, namely seeing others accomplish difficult situations . During A final thought for supporting older people in technology use comes from our observation that some of our participants kept very strictly to the skills that they had learned and became nervous about trying anything outside of their skill set. One can argue about the most appropriate way of learning: (1) providing very specific concrete instructions focused on specific applications or devices or (2) starting from more general technological competencies that could perhaps be applied to a variety of situations, applications, or devices. Hickman et al  show thaAbove, we take the perspective that barriers to technology use are a result of a lack of self-efficacy among the end users, in this study of older people. However, the lack of self-efficacy can also be the result of an inappropriate design of the technology. Tsai and colleagues  showed tTo test the suggestions above, more research with regard to older people’s technology use is required. Our overarching aim was to place older people in a better position to benefit from new ways of health care provision. In this study, we gained a deep understanding of older people’s day-to-day use of technology, which can be used as a basis for training development. Research into older people’s beliefs regarding their capacities in using health care technology using a pretest-posttest setup, before and after a training, might be a logical next step in research.This study shows that older people’s intention to use videoconferencing is directly predicted by their performance expectancy, effort expectancy, and perceived privacy or security. Additionally, self-efficacy significantly impacts older people’s effort expectancy, which subsequently impacts older people’s performance expectancy of videoconferencing. In the day-to-day situation, older people experience all kinds of obstacles when using digital technology. Self-efficacy and digital literacy appeared to be the most important theme that plays a role in their technology use and overcoming barriers. Overcoming barriers to technology use is necessary to be able to make use of the new ways of receiving health care involving digital technology.


South Carolina is considered a “new destination” state for Latino immigrants. Language barriers, transportation difficulties, low socioeconomic status, inflexible work schedules, different cultural norms, and anxiety and fear related to the current anti-immigrant political climate all negatively impact Latino immigrants’ frequency of contact with the health care system, and consequently they suffer poor health outcomes. The study objective was to explore uninsured Latina immigrant women’s access to health care and alternative treatment strategies in coastal South Carolina.The study design was a qualitative interview design. Thirty women participated in semi-structured interviews in community sites. Thematic analysis identified salient categories of topics across interview participants.The themes were organized into four primary categories including: 1) Barriers and Facilitators to Healthcare, 2) Health Behaviors and Coping Mechanisms, 3) Disease Management Strategies, and 4) Cultural Factors. Participants demonstrated determination for accessing care but reported that their primary health care access barriers included the high cost of services, lack of health insurance, family and work responsibilities, and language barriers. Coping mechanisms included activating their social networks, visiting family and friends and assisting one another with navigating life challenges.Participants overcame obstacles to obtain healthcare for themselves and their family members despite the multiple barriers presented. Social networks were leveraged to protect against some of the negative effects of financial barriers to health care access.The online version of this article (10.1186/s12913-018-3138-2) contains supplementary material, which is available to authorized users. South Carolina is considered a “new destinations” state for Hispanics/Latinos, like Georgia and North Carolina . The HisPrevious studies have reported that recent Latino immigrants are less likely to be knowledgeable about access to health care and other health-related resources  than Latino immigrants who have lived in the US for a longer period , 9. WhilThe purpose of this qualitative study was to explore Latina immigrant women’s access to health care for both preventive screenings and medical care in the coastal region of South Carolina. Our two primary research questions were: (1) What are the major individual and structural barriers facing this population for accessing health care? and (2) What are some of the alternative health care seeking strategies used by Latina immigrant women and corresponding cultural beliefs surrounding these practices? This study examined sociocultural factors associated with preventive health care for common chronic diseases affecting Latino immigrant women, such as cancer, cardiovascular disease, diabetes, and hypertension. The study also employed a community-engaged strategy to identify and address the most salient health issues from the community’s perspective.Thirty Latina immigrant women participated in a semi-structured qualitative interview facilitated by the third author, a native Spanish-speaking woman, in fall/winter 2016. Interview questions included standard close-ended survey questions for demographic and health history data and open-ended qualitative questions adapted from a similar study of health care access for an immigrant community in North Carolina  to protect confidentiality and differentiate interview participants.Table The following sections present the results of the qualitative data analysis. The themes were organized within four primary categories including: 1) Barriers and Facilitators to Health Care, 2) Health Behaviors and Coping Mechanisms, 3) Disease Management Strategies, and 4) Cultural Factors. Within these overarching themes were nested multiple codes including: Barriers, Community Positives and Negatives, Cost of Health Care, Positive and Negative Health Behaviors, Coping Mechanisms, Clinic Choice, Disease Management, Disease Perception, Medications, Signs of Illness, Role of Alternative Medicine, Role of Family, and Role of Religion. The interviews generated discussions related to uninsured, Latina immigrant women’s perceptions of access to health care and treatment or management strategies for various health conditions.The Barriers and Facilitators to Health Care theme contained the following codes: Barriers, Community Positives and Negatives, and Cost of Health Care. While the study participants described different strategies for accessing care, the primary barriers included the high cost of services, especially for emergency room care, lack of health insurance, family and work responsibilities, and language barriers. These were all more pressing concerns affecting access than other potential barriers mentioned such as transportation or discrimination in health care encounters. Facilitators to health care included access to interpretation services, social support from friends and faith leaders, and availability of low-cost prescriptions. Regarding financial barriers, one participant stated, “One can afford to pay for the doctor’s office visit to know what is wrong with you, but not for the treatment.” .Echoing these concerns, another woman explained that she could get an appointment for an eye exam but could not complete the surgery unless she paid $2600. She was unable to arrange for the provider to set up a payment plan and commented, “And so, they were going to make an appointment for my surgery, but I lost the appointment because I could not afford it. So, I told them I could not go, So, they just told me, ‘When you are ready.’” .Another participant explained that they once had to pay a very high price for insulin at a pharmacy. However, this participant subsequently found insulin at a lower price at a Wal-Mart pharmacy for between $20 and $40 dollars and explained, “I had a bad experience the first time I went to fill my prescription for insulin. I went to Walgreens and just one vial was $163.” .Additional complaints about perceived high costs of prescription drugs and health care services were frequent, particularly since participants did not have health insurance to offset the costs. For instance, some participants lamented the cost of health care and explained that they could not afford it because costs were not offset by health insurance. One participant stated, “It’s very expensive … just one doctor’s visit was $135 and then additionally I had to pay for the medicine. Basically, there went half of my weekly income.” . Another participant responded, “The big concern with our community is that doctor’s visits are very expensive. One doesn’t have the freedom to say, ‘I’ll just go’ because it’s a lot of money, and we don’t have health insurance.” .However, some participants did report that costs could be reduced at some clinics after submitting some paperwork to justify sliding scale fees. For example, one participant explained, “I had to fill an application, and then take it to have it approved, and then it was signed … I was originally being charged $400 and then I ended up with a $130 charge.” .Personally, what worries me is that if someone gets a serious illness, and because of lack of insurance or money it cannot be treated here. I have seen many people with children that were born abroad and since they don’t have medical insurance, if they happen to get cancer or leukemia they must go back to their country to die because, if there are no resources here, there are even less back home. .Nevertheless, the lack of insurance and high costs of health care could result in a failure to access care for those with serious illnesses or even lead them to return to their countries of origin to seek care. This sentiment was expressed by one participant.Another participant expressed a similar attitude and replied, “Well, unfortunately we are seeking help because our earnings are so low. And if one gets sick one doesn’t want to be a burden on the government like they say, so we look for free care, and sometimes one needs to pay to get it [health care].” .In addition, because of high medication prices, some patients do not refill their medications, leading to unfortunate outcomes from chronic conditions, such as uncontrolled hypertension. In some cases, patients had to set up payment plans due to their lack of prescription drug coverage. One participant explained, “It’s expensive…it’s a lot of money so sometimes one doesn’t buy the medicine one needs because it’s too expensive. If we get the generic it’s cheaper…In some supermarkets, some prescriptions are free.” . Another participant stressed the importance of payment plans by stating, “Well that medicine is costly, but I had to find a way to get it even though the cost was excessive…I had to set up a monthly payment plan.” .In addition to costs of seeking a doctor and affording one’s medication, several participants discussed work/life balance issues and the lack of social support as barriers to care. One participant stated, “I am taking care of my children and I don’t have anyone to help me here [in this country].” . Another participant responded, “Sometimes, well, most of the time we are at work. I go to work and dedicate my time to my job, so my health is affected.” .There was a complicated relationship between work and health. One woman explained, “they don’t eat healthy, but they work a lot.” , indicating that many Latinos spend a considerable amount of time working, with little time to take care of themselves or exercise. Women reported work as both a motivating factor for staying healthy and as a cause of poor health, “We’re so involved with our jobs and we work, work, work, and leave our health for last.” .An additional barrier to accessing care was language difficulty. This affected women’s confidence to make medical appointments and understand all the information conveyed during a typical visit. Even though some participants had tried to learn English, they ultimately were not successful. One participant explained, “The issue of language…and many people say, ‘You have been here for so many years, why don’t you learn [English]?’ Well, there are those who have that capacity to learn and then there are those that cannot speak another language.” . Another participant expressed frustration with the language barrier by stating, “For instance communication, their Spanish and our English [needs to improve] so that we can understand each other; sometimes the language barrier results in nothing getting done.” . Another participant responded, “Yes, it is a big, big barrier because I do not speak English well.” .Despite it not being a major barrier to care, access to interpreters or information provided in Spanish and lack of transportation was a source of stress for participants, as one participant stated, “I think that because there are less Latino people in this state … in other states with so many Latinos that are accustomed to see this, and here where they battle with people if they don’t speak English well, people get stressed out, and I have noticed this.” . Another participant stressed the importance of having interpreters available by stating, “If they had just told me: ‘just a minute let me check’ but I could see that they were just passing my piece of paper back and forth and no one told me what was going on … I felt very sad because I needed (interpreter) assistance and no one could help.” . Regarding transportation, one participant identified the barrier by explaining, “Well, that is an obstacle here, there is no public transportation.” .On the other hand, in terms of facilitators to health care, some participants reported that they had not felt discrimination in health care facilities and received interpretation assistance and prescription drug discounts. One participant stated, “Well, yes they gave me an interpreter” . Another explained, “Well, you can get free medical visits. That helps a lot, the Latino communities … there are times in the community, if they have the medicine, they will give it to you in the pharmacy for free.” .The Health Behaviors and Coping Mechanisms theme contained the following codes: Positive Health Behaviors, Negative Health Behaviors, and Coping Mechanisms. The participants’ health behaviors were heavily influenced by the barriers and facilitators operating in their daily lives. The most common negative health behavior reported was unhealthy dietary habits. This negative behavior was discussed as being a consequence of the cultural transition from their native countries in Latin America to the US, where food was natural and not processed or frozen and served as a protective effect against disease.[Regarding parents and grandparents] They didn’t get sick like we do today. No, they never ate grease, on the contrary, they ate food without grease, and they never said, my foot hurts, my back, like that, and they weren’t fat, because they were exercising all the time, one hour to walk to the plaza [outdoor market], all the time. .A general theme emerged that these women had greater access to inexpensive fresh fruits and vegetables in their native countries compared to the US. As a result, Latina immigrants experienced dietary changes and limitations that contributed to negative health behaviors. Additionally, participants acknowledged an unhealthy excess of fat consumption. For example, regarding dietary preferences, one participant replied, “We Latinos eat tortillas, a lot of tortillas, a lot of bread and a lot of grease.” . Another participant answered, “I had a lot of bloating, because of so much flour, bread, and tortilla.” . Another participant explained a generational shift in eating habits that were linked with overall health.Participants were generally able to identify desired positive health behaviors such as drinking lots of water, eating a healthy diet, and getting enough physical activity. During the interview process, many women also identified several preventive measures they would take to stay healthy including blood pressure screening, Pap tests, mammograms, taking vitamins, and getting eight hours of sleep on average. For example, one woman responded, “I believe in a daily thirty-minute walk, going to the gym or whatever it may be, the key is to keep moving.” .Strategies for managing depression and anxiety included coping mechanisms for self-help as well as helping others. None of the women sought professional psychological care or medication and relied instead on activities such as listening to music, knitting, reading, exercising, and cleaning to distract themselves from negative thoughts. For example, one participant stated, “The rest of my family is back in Mexico, so I try to listen to music or read, because I really like to read.” . Some women attributed their anxiety or depression to social isolation experienced from living in a non-Latino community due to language barriers and separation from family in their home countries. In addition, there was fear related to crime and immigration enforcement, as well as consternation when people exhibited racist attitudes. Since the interviews occurred during the 2016 Presidential election season, participants were very sensitive to the anti-immigrant rhetoric on display in the Republican campaign. One participant stated, “Well, I feel worried … how things are going here. They are talking about how Trump is going to remove all the Latinos, and he will get them all out.” . Another participant expressed fear by stating, “When my girls come home the older one scolds me: ‘Mom, why are all the blinds closed?’ I answer, ‘I like everything closed because it makes me feel better (safer)!’” . Another participant observed overt discrimination in public places by explaining one instance, “They answer rudely in the stores, and they answer in a loud voice so that everyone around can’t help but hear the answer. This bothered me.” .Women also helped each other cope by activating their social networks, visiting family and friends, and assisting one another with navigating life in the US. Many women identified their faith community as a source of social support. Attending church services and joining women’s groups were also identified as coping mechanisms for improving mental health. One participant replied, “We only speak a little English, so we gravitate to other new immigrants. It makes me feel good when I can help other women with whatever I can.” .The support they received in their church from fellow church members helped to improve women’s mental health and served as a safety net. One participant explained, “I go on Sundays and we learn in a group, we gather once a month, we are all women. And we pray, we share. That helps a lot with our mental health.” . Another participant stressed the importance of social support by stating, “I have pastors and brothers of my church to help me.” .The Disease Management Strategies theme contained the following codes: Clinic Choice, Disease Management, Disease Perception, Medications, and Signs of Illness. Study participants identified 15 different clinic choices in the Charleston area, the most common being an uptown free clinic, health department clinics, the university hospital and hospital emergency rooms. The uptown free clinic was listed most often because 13 of the 30 interviews were conducted there. A common theme that emerged was the idea of “shopping around” from clinic to clinic based on cost, language access and available services to avoid the high cost of emergency room care.Some participants reported no clinic preference and could not remember when they last saw a doctor. Participants were wary of incurring debt from an emergency room visit and used it as a last resort. Participants also reported discrimination in clinic waiting rooms due to language barriers and their uninsured status. When asked about dental care, most women had not found an affordable solution, so they avoided going to the dentist in the US. One participant stated, “When I travel to Mexico that’s when I get dental cleanings and checkups.” . Some local clinics offer free screenings but not free treatments or preventive care. Other clinics only offer free emergency tooth extractions.Women reported motivating factors for managing their health as well as their thought processes for deciding how to manage their health. A common motivator for these women was their families. They wanted to stay healthy, so they would be able to continue taking care of their children. Another motivating factor for these women was to prevent the progression of chronic diseases, such as high blood pressure and diabetes, which were the most prevalent chronic conditions among participants. As one woman explained, “The doctor told me to exercise, for my blood pressure.” . Another offered a comment, “I used to be overweight, but since then I decided to walk and walk.” .Many women described similar disease management processes for deciding when and how to visit a doctor for their health concerns. At the first sign of illness, they typically consult friends or family members, and many participants explained that they would try alternative medicine first to feel better before visiting a doctor. One participant explained, “Well the first thing we do is ask our aunt or grandparent, ‘these are my symptoms, what could it be?’ before going to the doctor. Then they tell us a remedy and we try it, and if that doesn’t work then we go to the doctor.” .Most women reported having a threshold for when they decide to visit a doctor. One participant stated, “If my knee hurts, I sit down for a while and keep doing my work. But if I have a fever or vomiting… that’s when I go to the emergency room.” . Another participant described her treatment strategy, “Well if something hurts… you wait until you feel really sick and then you run to the doctor. In the meantime, you take a pill or something.” .tiendas mexicanas (Mexican stores) as a source of over-the-counter medicines, and one participant referenced a former bad habit of buying antibiotics at one of these stores and not taking the medicine correctly. A general theme from these interviews is the idea of self-medication in which women attempt to self-treat their health problems before going to a doctor for a prescription. These women also “shop around” at different pharmacies that offer certain medicines for free, such as free blood pressure medicines at one grocery store chain. Finally, women often choose generic or off-brand medications instead of name-brands as a cheaper option. One participant explained, “In the past we bought [antibiotics] at the Mexican store, but I’ve gotten rid of that bad habit because it didn’t always help.” . Other participants mentioned shopping at the Mexican grocery stores for their over-the-counter medications. Finally, another woman implied that if the generic was not available, the brand-name prescription medicines were too expensive, as one participant stated, “Sometimes I don’t buy the medicine, because it’s very expensive. But if you go for the generic, it’s cheaper.” .When asked where they get their medications, 14 women reported using Wal-Mart as a primary pharmacy choice for over-the-counter medications. One participant from El Salvador reported difficulties obtaining a prescription from a large chain drugstore by showing a passport for identification. Six women referenced Responses around signs and symptoms of illness served as indicators and cues to action that would cause women to acknowledge their health condition and seek care or treatment. In general, women reported that symptoms are signs of illness from their bodies. One participant explained, “You know your body and you know when something is not right.” .The top three most important community health concerns reported by study participants were: 1) diabetes, 2) obesity, and 3) cancer. When ranking these health concerns, women recalled family history and referenced people they knew in the community with certain diseases. Participants also discussed perceived causes of disease, such as poor nutrition, drinking soda and lack of exercise. One participant explained, “Many people drink a lot of soda, too much soda. They’ll get diabetes and keep drinking soda.” .One participant mentioned that she did not want to take ownership or identify with her disease. She commented, “I don’t like to say my diabetes. The diabetes, it’s not mine, I don’t want to make it mine.” .There were mixed responses for women’s perceived control over their own health. Some women believed they had control over their health, while others expressed less control. For example, one participant stated, “Yes, I think I do have [control]. Sometimes I don’t act on it, but I know that I can, I’m just careless sometimes.” . Another stated, “I don’t have much [control] because I’m not doing everything that I need to do.” .The Cultural Factors theme contained the following codes: Role of Alternative Medicine, Role of Family, and Role of Religion. The role of the family was discussed by most interview participants. Women admitted that when they were sick, they were very depressed because they could not help with housework or attend to their children, expressing traditional gender norms. For example, one participant stated, “I’m like the motor of my family. If I’m sick my home doesn’t function, I don’t work, I don’t cook, I don’t clean I just lay down. This makes you feel bad.” .While participants valued the advice of their elder relatives for treatment advice, many women were very dependent on their children for English assistance. Since participants did not speak English very well, they often relied on their children to translate for them in many situations. One participant explained, “Yes, thanks to God, my children have been teaching me to speak English… I want to feel better and be happy with my children. And, the children, they go with you and translate for you… they help you.” . Another participant also expressed a similar sentiment by stating, “[My daughters] translate for me, and sometimes, when I need to go to the doctor, I say: ‘When you get home from school, we’re going to the doctor’ [they say] ‘Okay’ and they translate for me.” .Most participants spoke about the role of religion in their life and the importance of prayer. One participant stated, “Always everything that I need and when I feel stressed out, what I do is ask her . I pray to her always.” .Participants felt a sense of community in their churches and a relief from the outside stressors. One participant expressed this sentiment well by stating, “Yes, going to church relaxes me in other words, I love coming to church, to pray for my family, for my sons and daughters, and well for everything…we forget all our problems.” .Study participants also employed several home remedies to possibly delay or avoid having to take on the extra out-of-pocket costs that a clinic visit would entail. For example, one participant stated, “Well, my natural remedies. For example, when I’m sick with the flu, my mom always told me to put orange peel and lemon peel to boil with cinnamon. ‘Drink this to get rid of your cold’… yes, yes, various things my mom gave us. ‘If your ear hurts, add oregano.’” .I make chamomile tea, mint tea, and for anxiety and nerves I make the one of the seven herbs with valerian root…And for the kidneys I use arnica and that plant called horse tail. You boil a quart of water add a pinch of arnica and three threads of that plant. Then boil all that for a few minutes, cool it in a pitcher and drink that water all day and use it for any other cooking that requires water. .Others provided a lot of information about remedies, including specific instructions for recipes. One participant explained,sobandera, or folk healer, who employs massage and natural remedies to heal the sick. One participant explained, “I know several people who have gotten better. My friend suffered with back pain, so she went to see a folk healer and now she is better.” . Another participant discussed her experience, “I used to go to a folk healer, and she would rub me with some creams like Vaporub.” .Some would also opt to use the services of a mal de ojo, or ‘evil eye.’ She explained, “When someone is vomiting and having constant diarrhea, this is evil eye. There is a special herb that can be used to cure it to stop the diarrhea and vomiting.” .Finally, participants also expressed the cultural belief in certain folk illnesses, with one participant explaining the case of The aims of this qualitative research study were to explore the barriers that Latina immigrant women encounter when attempting to access health care in coastal South Carolina and to identify alternative health care strategies that women pursue, as well as the beliefs underlying these practices. The research inquiry method allowed women to express multiple barriers to health care access through the interview process facilitated by a Latina female interviewer in Spanish, thus allowing for more open dialogue and discussion. Women identified their difficulties in accessing health care because they did not have either the financial resources or health insurance which would help to defray costs, especially in the case of specialty care. Therefore, we concluded from the sum of the interviews that women would oftentimes either delay or forego seeking health care because they perceived that they would not be able to afford the financial costs. Most of the participants lived in low-income households and were being supported by a spouse or domestic partner.While many immigrant women interviewed had lived in the US over 10 years, they still encountered barriers to health care access. The barrier of health care costs for primary care was addressed by the free and low-cost health care options for the uninsured patient population: free clinics, health departments, and federally qualified health centers offer affordable services that include primary care, vision screening, dental care, vaccinations, STD/HIV testing, pediatric care, and prenatal care. These clinics do not require proof of insurance and accept sliding scale payments based on income. Access to these resources is restricted sometimes by place of residence or household income thresholds. To access the health care women were seeking, immigrant women employed a strategy of “shopping around.” This strategy sometimes involved visiting their regular provider; however, in practice, participants consulted with several providers for different needs. The last resort for uninsured and undocumented patients was the use of emergency Medicaid, which would apply in the case of patient with advanced cancer for example, but we did not encounter these chronically ill patients in this study .Those who are either uninsured or underinsured are effectively ‘priced-out’ of the health insurance market and reliant on emergency room care, where care cannot be refused. The options for the participants in this study were to schedule an appointment with a free or low-cost clinic, seek same-day care at an urgent care center, or seek emergency room services, which was a last resort. Since emergency room care is one of the most expensive forms of health care, the overutilization of these services by uninsured populations such as undocumented immigrants who cannot afford to pay for services is an unnecessary strain on a health system’s resources and is financially unsustainable . While cIn the field of medical anthropology, the term ‘structural vulnerability’ is used to describe how a group of people experience negative health outcomes because of their subaltern position in society, exposing them to economic exploitation and structural violence . UninsurCurrently in the US, the inability of some patients to provide proof of citizenship or legal residence combined with a lack of health insurance places them in a structurally vulnerable situation where they face the possibility of being denied health care or receiving substandard care. The Mexican Consulate provides a consular identification card which, participants reported in this study, is diligently renewed every five years and used for identification to receive health care services. The participants shared that they always either carry this card or their passport – for those from Central America. Others shared that they carried identification issued by one of the ‘Sanctuary Cities’ in other states, such as Texas, that have immigrant friendly policies. Despite having these forms of identification, some participants reporting being unable to obtain their prescription drugs from some pharmacies with these ID cards.Viewing financial and insurance barriers to health care as structural problems which require comprehensive policy and programmatic solutions is one pragmatic approach to address these seemingly intractable problems in the current US health care landscape . As explThe stigmatizing of a group of people has ripple effects which negatively affects Latino immigrant’s physical and mental health independent of immigration status . FurtherThrough the course of interviews, a theme emerged that the delaying of accessing health care services was associated with an internalized feeling of not being worthy or deserving of care, as evidenced by not wanting to be perceived as using government assistance programs reserved for US citizens. The indirect result of delaying or avoiding health care had several negative consequences which included worsening of pre-existing chronic conditions, insufficient or unnecessarily delayed prenatal care, returning to one’s country of origin for treatment of terminal illnesses, and inappropriate medication usages, such as inability to refill prescriptions or inappropriately using antibiotics obtained on the black market. Similar findings were reported by mixed methods studies of the public health effects of immigration policies on residents in North Carolina  and ArizAdditional barriers to health care women mentioned included inflexible work schedules, the lack of interpreters at some clinics and difficulties in finding someone to give them a ride or with navigating the transit system. Consequently, they treated health care as a last resort when their traditional remedies or over-the-counter treatment strategies failed them. The looming possibility of incurring financial debt produced stress, fear, and anxiety. Moreover, the inability to find reliable and affordable health care, especially for chronic conditions, caused women to experience depressive symptoms, which were compounded by the larger society’s narrative which treated them as outsiders and not a part of the community. They found solace in their personal networks, strengthened through their association with a church and its faith leaders. Despite the many obstacles in their personal lives, they expressed optimism for the future of their children, who were oftentimes fluent English speakers and US citizens by birth.The study participants were immigrants who came to the US primarily as economic migrants. One of the limitations of this research is that we did not directly ask participants to report their immigration status, but fears of increased immigration enforcement were expressed by many participants. Questions about which type of identification they used for health care appointments were usually evaded, suggesting that asking about immigration status could lead to feelings of distrust. The participants included mostly women from Mexico (80%), with the others divided evenly between the countries of El Salvador, Guatemala, and Honduras. The women all had different reasons and rationale to explain their decision to come to the US, but this was beyond the scope of the interview questions about health care access. While participants acknowledged there were many problems with the health care system in the US in terms of affordable access for serious conditions, they expressed that there were even fewer specialty care services and lower quality of care in their home countries.This study allowed participants to share their experiences and challenges with accessing the US health care system. The Latina women discussed how their physical activity and eating patterns had changed for the worse since living in the US, but they retained many of the natural remedies they used to stay healthy and avoid getting sick. However, they would seek ‘black market’ sources for cheaper prescription drugs, like findings from a study on medication usage by immigrants in North Carolina . FrequenSince the interviews took place during the 2016 US Presidential campaign, the increased immigration enforcement activities by US Immigration and Customs Enforcement (ICE) had not yet occurred. Since the US presidential election, there have been many public meetings in different Latino communities in South Carolina to address people’s fears and to answer immigration law questions in response to the imminent threat posed by increased ICE activity. There is a need for more longitudinal studies to measure the direct and indirect effects of increased immigration enforcement activities on health care access for Latino immigrants. These types of studies should measure the long-term effects of immigration policies on health outcomes and employ mixed methods research designs. Moreover, in addition to the need for immigration policy reform, future US health care policy should identify solutions for the health care and health insurance needs of the 11 million undocumented people living in the US to improve health equity for all.Additional file 1:Qualitative Interview Instrument. This instrument contains close-ended questions on health history and demographic variables and open-ended questions focusing on access to healthcare. (DOCX 33 kb)


The medical ‘management’ of individuals with atypical sex characteristics, orintersex variations, has been under scrutiny since the beginnings of intersexactivism in the 1990s. This article explores a history of intersex surgeries inBritain and the interaction with medical and popular discourses around‘sex-change’ between 1930 and 1955. A focus on this period in Britain helps tocritically elaborate on debates in intersex scholarship; provides historicalcontext for the introduction of approaches and protocols based on John Money andcolleagues’ work in the USA in the mid-century; and analyses a long history oftension and intersection between trans and intersex experiences, treatments,politics and popular representations that continue into the present. Femaleness, however, is associatedwith passivity, lack and failure; the female body is the situation that Westonremarkably overcomes.In his own account, Broster described how Weston was admitted to Charing Cross in1935 for ‘an opinion on his sex’ : 47. BroThe ‘sex change’ narrative that structured popular understandings of Weston waspopular in the press in the 1930s, and this coincided with new medical claims andpublished accounts of surgical procedures to ‘manage’ atypical sex anatomies . In effeThe AdrenalCortex and Intersexuality, he described a case study of a woman who‘wants to be a man’ so that she could marry her girlfriend. No physical abnormalitywas found, so Allen offered psychotherapy to address her (in his view)homosexuality, which she refused  to create and maintain a dichotomous,two-sex model of sex and sexuality. The language that Broster used demonstrates amoral difference between what the medical profession considered biological andpsychological abnormalities. When biological ‘abnormalities’ were apparent, theindividual was deserving of pity. However, when the medical professional identifiedpsychological ‘abnormalities’, there was a moral and social obligation on theindividual to submit to treatment .Those who refused treatment for the medical profession’s definition of psychologicaland sexual abnormality were considered propagandists worthy of scorn andhostility.Individuals who wanted access to ‘sex change’ surgeries had to navigate a medicalterrain structured by these moral distinctions. Michael Dillon, registered female atbirth in 1915, had a mastectomy in 1942. Later that year he made contact withworld-leading plastic surgeon Sir Harold Gillies about possible further surgery.Dillon amended his birth certificate to male in 1944; at the time, this was possiblewith a medical certificate  and acertificate from a member of the family . After re-registration, he underwent a series of treatments includingwhat is generally considered to be the world’s first phalloplasty from 1946 until1955 . WhileDIn sum, Dillon was actively navigating a medical encounter structured by Gillies’considerable authority . Although Dillon wasexcluded from the community of professional medical practice, he was an actor whohad to navigate this network . GilliesSelf: A Study in Ethics andEndocrinology, in which he argued that when there is ‘anincompatibility between the mind and the body, either the body must be made to fitthe mind … or the mind be made to fit the body; and that is for the patienthimself to judge if he be of age’ . Dillon’sopinion was not widely shared in the medical community. For Broster and Allen, theincompatibility between mind and body, if unaccompanied by intersex variations,should be treated by making the mind fit the body. A moral hierarchy was defined,whereby ‘natural’ or biological differences from a norm deserved pity, and otherdifferences deserved contempt. Significantly, Dillon’s book in 1946 challenged whogot to decide what and when treatment is appropriate, suggesting that legitimacycould come from self-determination, not medical authority.Dillon’s experience with Gillies was certainly not typical of individuals whoapproached the medical profession looking for what was referred to as ‘sex change’at the time. While he successfully obtained the surgical and hormonal interventionshe wanted, it is clear that other individuals did not find this negotiation easy, oreven possible. In 1946, Dillon published how extensive the hermaphroditism was could not be decided without a moredetailed examination and laboratory tests. There was a possibility that someof the internal organs might be female … This knowledge raised my moralevery considerably. The intense shame I had felt began to disappear. Once Irealised that my femininity had a physical basis I did not despise myself somuch. I now knew, of course, that I was physically abnormal, but I couldaccept a degree of involuntary femininity without losing self-respect.: 42Cowell reinforced this intersex narrative throughout her biography, anddescribed her transformation as one that was happening anyway, and that medicalintervention helped along. She maintained this narrative, even in her finalpublished interview in 1972:I was a freak. I had an operation and I’m not a freak any more. I had femalechromosome make-up, XX. The people who have followed me have often beenthose with male chromosomes, XY. So they’ve been normal people who’ve turnedthemselves into freaks by means of the operation.  subjectto experimental medical treatments, often without consent or disclosure; they didnot have unproblematic access to legitimacy. Cowell’s narrative is also potentiallydivisive and damaging to trans politics, as it suggests that biology and medicineare the correct arbiters of legitimacy and frames trans people as ‘freaks’ in theprocess. Cowell positions herself as more legitimate and deserving of medicalattention, which establishes a moral hierarchy of legitimate and illegitimate transsubjects. This is a significantly different approach to Dillon, who appealed forlegitimacy based on self-determination, rather than medical authority.Similar to Broster and Allen’s cases, there were differences in the experience of menand women approaching the medical profession for surgery. Roberta Cowell was born in1918 and assigned male. In her 1954 autobiography she stated: ‘Since May 18th, 1951,I have been Roberta Cowell, female. I have become woman physically, psychologically,glandularly and legally’ : 5. CoweIn Cowell’s autobiography, she talks about meeting Dillon, but only briefly. LizHodgkinson’s biography of Dillon, however, suggests a long and intense relationshipwith Dillon introducing Cowell to Gillies, giving advice on how to negotiateGillies’ authority, and writing to Gillies himself stressing the very heterosexualrelationship between himself and Cowell . Cowell’In Cowell’s self-description, she clearly (and understandably) invoked the logicexpressed by Broster and Allen. Intersex treatment seemed to involve a consultativeprocess that (at least to some extent) took into account an individual’s‘psychology’, social role, and ‘self’, something that was not true of contemporarytreatment of individuals requesting ‘sex change surgeries’. To the medicalprofession, ‘transsexuals’ were seen as threatening, described as ‘decadentimitators’ deserving of hostility : 95. In 6 and soon after urological registrar to Great Ormond Street Hospital, wasdescribed as the ‘father of paediatric urology’ in the UK . Williams did not explicitly reference Broster orAllen. When he did reference an endocrinologist, it was GIM Swyer, whose ‘hithertoundescribed form’ of ‘male pseudohermaphroditism’ in 1955 would go on to be known as‘Swyer syndrome’  and things (including case notes) were drawn together . Williamhildhood . The booyndrome’ .It is generally recognized that restoration of normal masculine micturitionmust, if possible, be achieved before the school age, say 5 to 8 years. Forpsychological reasons it is obviously important that the boy at schoolshould pass urine like his fellows. : 219Unlike Broster and Allen’s focus on adult sexuality, here it is thechild’s psychology that is in question. In the case ofhypospadias, surgery is invoked as enabling standing-up urination, which is‘obviously important’ for healthy male development. Standing-up urination ishistorically important for a person’s place as a man in society  and precarious .Although Broster and Allen were not recalled in this new paradigm, psychology wasinvoked in this book. When discussing hypospadias, Williams states: society : 28–9. H society : 249. MeThe problem of the infant of doubtful sex is one which occasionally facesevery clinician who concerns himself with children’s work, and yet, in spiteof the importance of a correct decision, it is still impossible to obtainguidance of this matter from the ordinary textbooks. Too often the decisionis postponed to see which way the child will develop; the parents are leftwithout guidance, and their natural anxiety is communicated to the child,who is thus in danger of becoming a psychological as well as a surgicalproblem. The precariousness of childhood psychological development is againinvoked as a justification for early intervention. Interestingly, parental anxietyis also invoked as a threat to psychological development, and one which surgery onthe child can manage. The article demonstrates the prevalence of ‘doubtful sex’,locates it as a childhood issue, emphasizes the importance of swift and surgicalresponse, and depends upon a strict delineation between male and female bodies.The following year, Williams published ‘The Diagnosis of Intersex’ in which he againemphasized the lack of knowledge and uncertainty in this field:8 Armstrong was concerned with the ambiguities posed to both medicine and thelaw by clinical experience with intersex variations: ‘So far the law has neverdefined sex, which is extraordinary in view of the homosexual laws in this country,and it is sometimes very difficult to say to which sex an individual belongs’. For Armstrong, the existence of variations in sex anatomymakes the boundary between male and female bodies uncertain. Consequently, ifbiological sex is not easy to define, then this uncertainty is increased inattempting to define homosexuality; and as homosexuality was at the time defined asa problem (whether as crime or disease), this provokes uncertainty into how to dealwith this problem. Heterosexuality was a sign of clinical success, even ifclinicians and other medical professionals did not share a definition ofhomosexuality, or even heterosexuality; in fact, their definitions could be verymuch in conflict with one another  in the 1950s. another . In termThe legal determining factor in intersex cases is the anatomical structure ofthe gonad independent of the social or sexual inclinations or externalappearance of the subject. In this case, therefore, the legal sex is male,and although one would have no hesitation in defending this patient's desireto continue living as a female, the clinical problem does arise as to howfar a surgeon is justified in carrying out a plastic operation to make avagina which, in this case, has already been requested. :302While Armstrong saw no reason to force the patient to make their socialsex match their gonadal sex, he does question the practice of surgically making thebody fit the social sex, and thereby allowing female patients  to have sexual relationships with other men. While there was aconsultative process of sorts beyond the ‘truth’ of the gonads, only that which wasnormative in terms of ‘social sex’ could be sanctioned in adults.In 1952, Armstrong had suggested that the legal sex should be defined solely ongonads. In the discussion of a 17-year-old female patient with internal testes or‘male pseudohermaphroditism’, Armstrong stated:as child psychology, whereas for Williams, surgery should beused to make the body of the child fit their pre-existing psychology (howevervaguely defined). Money had access to advanced discourses of psychology and otheremerging fields. In fact, as Surgery seems to have fulfilled several social roles here, including supporting vagueideas of psychological well-being. In the UK in the 1930s and 1940s, medicalprofessionals like Broster and Allen had separated the psychological treatment oftranssexuals from the surgical and hormonal treatment of intersex individuals. Inthe early 1950s, Williams further suggested that surgery could be put in the serviceof ‘healthy’ psychological development. This seems to suggest a John Money-likeapproach to surgery, as a tool to construct and maintain social and cultural normsfor the psychological well-being of individuals, in the UK, in the years precedingMoney’s influence. However, Williams’ notion of ‘psychology’ was ill defined, whileMoney’s publications sought to present methods and guidelines that were apparentlybacked by empirical data and theoretical justifications. Also, Money used surgeryHermaphrodites and the Medical Invention of Sex, historianAlice Dreger described the period at the end of the 19th and start of the 20thcentury as the ‘age of the gonads’, when sex was theoretically defined by theexistence of ovaries or testes. In practice, however, medical professionals did notrigidly attempt to make the lived or social sex match up to the ‘truth’ of thegonads (1998: 158). Geertje Mak has critically elaborated upon Dreger’s thesis tosuggest that from the early 1900s, physicians also began to take the ‘self’ ofindividuals with atypical sex anatomies into consideration . This paper constructs the child as both an individual withethical needs, as well as within a family with complex rights and responsibility.Crucially however, the child is also constructed as a future adult,and thus any medical intervention needs to grapple with the ethics of the well-beingand the rights of both the child and the future adult. These are fuzzy andheterogenous overlapping categories, despite the purification attempts of themedical profession.The shift of focus onto the child naturalized the redrawn medical boundaries betweentrans and intersex, between biology and psychology, and between the child and theadult. John Money has merited more detailed study than any other author in thisfield . To some9 However, as Alice Dreger and April Herndon argue, ‘even though there may bedifferences between intersex and trans-gender, there are also reasons for intersexand trans activists to unite’, particularly around human rights (BMJ noted the relevance of theEuropean Union Agency for Fundamental Rights April 2015 recommendation that memberstates avoid non-consensual medical treatments on intersex individuals (Focusing on the UK in the period before Money’s guidelines would become paradigmoffers a historical view of the tensions and intersections of trans and intersexpolitics, experiences and representations, tensions and intersections that continueinto the present. Trans histories are relevant but not identical to intersexhistory. The histories intersect, but are divided by the moral dichotomy describedin this article, as well as very different experiences of the medical profession.n rights :213. Whividuals . Despiteividuals . While iividuals . It seem


BBZ, Studio 7A, BBZ Plaza, Burbank, 7.30 pm: Abigail Repor‐Tastory, Discovery Presenter, turns to face the camera: Good evening and welcome to a new episode of “Discoveries that Change our Lives”. Our guest this evening is Dr. Anastasia Noitall‐Most(shaking hands) and thank you for appearing on the program.Dr. Noitall‐Most: Good evening Abi; it is always a pleasure to be here.Ms. Repor‐Tastory: Ani – a seemingly sensational breakthrough that will allow us to choose whether we sport curly or straight hair was recently reported in the respected journal Natural Science – is it credible?Dr. Noitall‐Most: Well, as you know, the previous theory about hair type was that it is determined by the shape of the hair follicle – if you like, the hair production centre. Straight follicles were thought to produce straight hair, whereas curved follicles thought to produce hooked hair shafts that give curly hair. However, the follicle shape theory was based purely on correlation and the new results have consigned it to the bin.Ms. Repor‐Tastory: Gosh! So this discovery is really important. Ani: how was it made?Dr. Noitall‐Most: Well Abi, it is, as most breakthroughs are, the result of a bright individual  connecting apparently unrelated threads of knowledge. The first is that, for reasons previously unknown, hair curling tendency, known in the business as HCT, can change dramatically with age, medication, etc. The second is a study of the microbiome of the scalp‐hair follicle microenvironment which revealed that certain types of bacteria, called enterobacteria (EB), are present in different amounts in people with curly hair and with straight hair. This suggested that EB may play a role in determining HCT.Ms. Repor‐Tastory: Yes, Ani, but we have heard so much recently about people drawing all manner of silly conclusions from correlations, and from a slew of inane and/or poorly‐designed trials. How is this study different?Dr. Noitall‐Most: Abi, you are absolutely right! However, in this case, the science is quite strong. It turns out that the EB identified have been shown to produce curli fimbriaeMs. Repor‐Tastory: But this is still only a correlation and….Dr. Noitall‐Most, breaking in and in a slightly irritated tone: Indeed, but, as I was about to say, the people from F'Real Hair Carehair microbiome transplants – into the scalps of the donors in a double blind, randomised trial, and monitored any changes in hair type occurring over a 6‐week period. The amazing result was that, in 73% of the cases, straight hair turned curly if it had received a “curly transplant”, and curly hair turned straight if it had received a “straight transplant”! Even more amazing was that a quantitative microbiome analysis after 6‐weeks showed that the straight‐curly characteristic, HCT, correlated almost perfectly with the level of EBs in the follicle areas, including in those outliers for which the transplant did not work!Ms. Repor‐Tastory: But didn't I read somewhere of an adverse effect of the transplant?Dr. Noitall‐Most: Correct! Apparently, during the dose‐response trial, two members, who unknowingly had received the highest doses of the curly transplant, became…..let's say amorously involved. And during a somewhat intimate tête‐à‐tête, their super curly heads of hair became impossibly tangled together – the trial chief called it a Velcro situation – such that they became glued together at their heads! It was a tad embarrassing for them, firstly in having to seek help under rather compromising circumstances, to get separated by having the joined locks cut off, and subsequently in explaining their change in appearance to their regular partners. This part of the trial was immediately aborted, of course, but the trial itself was successful in demonstrating that lower, non‐problematic doses are effective in changing HCT.Ms. Repor‐Tastory, giggling: Wow! So when can I get my “straight transplant”?Dr. Noitall‐Most: According to a press release made last week by F'Real Hair Care , the first products will be marketed within one year in hairdressing salons, to be applied in a scalp massage product, after hair bleaching‐colouring. The reason for this is that the company found that the success rate rises from 73% to 91% if the transplant is made after a major microbiome perturbation, such as occurs during the hair bleaching process, which gives the transplant a better chance of taking. I assume they will carefully monitor and gain experience from this restricted application, before making it generally available for home use, probably in the form of a gel product.Ms. Repor‐Tastory: Fantastic! On that note, we'll take a break and return to this fascinating story in a few minutes.++++++++++++Ms. Repor‐Tastory: Welcome back viewers! Now, Ani, could you please explain to our readers how this curli stuff works?Dr. Noitall‐Most: Yes, Abi. In fact, curli proteins have a multitude of properties,Ms. Repor‐Tastory, promptly crossing her legs: Ooohh!Dr. Noitall‐Most: …and curli plays an essential role in the infection process, in both humans and plants.Ms. Repor‐Tastory, scratching her head: Oh, my!Dr. Noitall‐Most: …But no worries, Abi: most EBs, including those found in the scalp microbiome, are generally harmless. So how does curli affect hair curling? As I mentioned earlier, EBs on the scalp release curli protein which, in the presence of hair shafts, forms fibres that curl around the hair – we think by binding to keratin, a protein found in skin, nails, hair and horns – the so‐called horny protein. When it does this, it bends the hair shaft. When a lot of it is produced by a lot of EBs, a lot of bending is done, and hey presto – curls are formed!Ms. Repor‐Tastory, smiling: Now that is remarkable! So curli and horny marry and give birth to wavy? Amazing! I am sure our viewers are thinking: well – our body hair tends to be curly whatever the form of the hair on our heads. Is that anything to do with EBs and curli?Dr. Noitall‐Most: Absolutely, Abi: excellent point! As one might predict, EB numbers in axial regions and, in the case of males, on other body surfaces, are systematically high. In fact, the renowned mathematician Professor Fidget Jones has derived a very simple formulaMs. Repor‐Tastory: So if I double the number of EBs on my scalp, I'll double the curliness of my hair?Dr. Noitall‐Most: No, not exactly. One thing that researchers found out is that there is not a one‐to‐one relationship between EB numbers and degree of curliness. Apparently, production of the curli protein is influenced by something called “quorum sensing” which, stated simply, means that the more EBs on the hair shaft, the more curli protein each one produces. It is typical group behaviour, for example, of a football stadium crowd, in which a few potential bottle throwers tend to save their energies for wife‐beating at home, whereas many together will cause a riot on the pitch.Ms. Repor‐Tastory: Oh, ok: so EBs are a bit like football rowdies with curli acting as their missiles?Dr. Noitall‐Most: Well: that is a bit of over‐dramatisation. Of course, the equation does not take into account isolated events, like frights, which can stiffen hair and reduce the curl factor, or hair treatments, like the application of gels, etc. Viewers can get more in‐depth information about these aspects from my website, the address of which will be shown in the credits at the end of the programMs. Repor‐Tastory: What a fascinating story! We'll take another break and return in a few moments to the final part of this incredible story.++++++++++++++++++Ms. Repor‐Tastory: Welcome back viewers! In this final part of the curly hair story, we want to learn from Dr. Noitall‐Most about the business of scalp microbiome transplants and what the future holds. Ani: would you please tell us what we can expect in the future?Dr. Noitall‐Most: With pleasure! The first item to mention is that, although EBs are natural products, and hence not controversial as additives in, say, food or personal care products, there is an expectation that all types of microbiome transplant will eventually fall under regulatory scrutiny and safety regulation in the not‐too‐distant future. For this reason, R&D is currently directed at providing a single, extremely well characterised EB that can substitute for whole microbiome transplants, and whose safety and efficacy is incontestably documented. The potential problem is an ecological one: will a single strain of EB be ecologically competitive in all scalp environments, and thereby do its curly work? The other side of this coin is that it will be necessary to find a single microbiome member effective at displacing curli‐producing EBs from curly hair, the so‐called disEB, and at creating straight hair.Ms. Repor‐Tastory, straight‐faced: I see. So not all is straight‐forward (sorry!) in the curly business?Dr. Noitall‐Most: No…quite. However, many countries do not have comprehensive regulatory systems in place, so, from the business point of view, there is not much hindrance to product marketing from a global perspective.Ms. Repor‐Tastory: I see. So where are currently the most promising markets?Dr. Noitall‐Most, smiling: Oh: I'd have thought this was obvious. Much of the world is seriously curly‐haired and the women in particular spend an enormous amount of time and money straightening their hair. And much of the remainder is straight‐haired and desirous of curly locks. In fact, as you will be aware, it is a normal human trait to be dissatisfied with the looks our parents pass on to us, and to want to change them. Given that the global population is currently around 7.5 billion, even considering only the 20‐50 age group in 20% of the population, there is a considerable market for hair microbiome treatments.Ms. Repor‐Tastory: Wow: this is mind‐blowing! What business potential!Dr. Noitall‐Most, grinning: It would seem so…and we should also keep in mind that any hair treatment, including repeated washing, but especially visits to the hair dresser, is likely to reduce over time the numbers of EB or disEB, so repeat, probably life‐long, treatments will be the norm, which will, of course, be good for the business.Ms. Repor‐Tastory: What a perfect situation!Dr. Noitall‐Most, grinning widely: Yes, but that is not the end of the story. A major pet grooming products company has now started marketing dog and cat versions of the curly and straight transplants, and is aggressively promoting new pet fashion trends to create a market. I suspect we will start to see some rather unusual household pet styles in the near future. By the way, the HCT formula developed by Fidget Jones requires additional terms when applied to pets, to take into account the tendency to curl up in front of the fire, which reduces the production of curli, as indeed do the continual self‐grooming by licking, exhibited by cats, and the rolling in any available smelly dirt, exhibited by dogs.Ms. Repor‐Tastory: Goodness! Are there any flies in the ointment?Dr. Noitall‐Most, gravely: Well, as I mentioned, there is an issue of temperature: curli protein tends to be produced better at temperatures below 30°C by most strains of EB, which is fine for folks living in Arctic/sub‐Arctic climes, but not for the majority of large populations with either curly or straight hair. However, some strains, unfortunately mostly pathogenic strains, produce curli at human body temperature, so there is a search right now for a non‐pathogenic strain producing curli at body temperature that would not raise the hackles of regulatory agencies.Ms. Repor‐Tastory, composing herself: errrm…are there any known safety issues that might negatively impact the business model?Dr. Noitall‐Most: At present, there are no known significant safety issues of either non‐pathogenic EBs or curli, apart from potential exacerbation of inflammatory conditions of the skin, like dermatitis, psoriasis, etc., because curli has been shown to have inflammation‐inducing capacity. From medical and ecological theoretical points of view, there are no obvious risks, though only usage over a number of years will tell. Of course, as with any new development, there exists a possibility of misuse, such as accidental or deliberate overdosing, either self‐inflicted, or perpetrated by a rival, jealous ex‐partner, or even drunken friends, to convert straight elegance to curly mop .Ms. Repor‐Tastory: Well: on that cautionary but responsible note, we bring to an end this fascinating topic of hair microbiome transplants. Thank you so much Dr. Noitall‐Most for being with us tonight and we look forward to seeing you again on this programme to enlighten us on another topic in the series of “Discoveries that Change our Lives”.Ms. Repor‐Tastory, off camera, off microphone: Thanks a million, Ani! Sorry – must rush: need to contact my broker before F'Real shares go through the roof!!None declared.