There is a growing number of Internet-based approaches that offer young people screening for sexually transmitted infections.This paper explores young men’s views towards the barriers and facilitators of implementing an Internet-based screening approach. The study sought to consider ways in which the proposed intervention would reach and engage men across ages and socioeconomic backgrounds.This qualitative study included 15 focus groups with 60 heterosexual young men (aged 16-24 years) across central Scotland, drawn across age and socioeconomic backgrounds. Focus groups began by obtaining postcode data to allocate participants to a high/low deprivation category. Focus group discussions involved exploration of men’s knowledge of chlamydia, use of technology, and views toward Internet-based screening. Men were shown sample screening invitation letters, test kits, and existing screening websites to facilitate discussions. Transcripts from audio recordings were analyzed with "Framework Analysis".Men’s Internet and technology use was heterogeneous in terms of individual practices, with greater use among older men (aged 20-24 years) than teenagers and some deprivation-related differences in use. We detail three themes related to barriers to successful implementation: acceptability, confidentiality and privacy concerns, and language, style, and content. These themes identify ways Internet-based screening approaches may fail to engage some men, such as by raising anxiety and failing to convey confidentiality. Men wanted screening websites to frame screening as a serious issue, rather than using humorous images and text. Participants were encouraged to reach a consensus within their groups on their broad design and style preferences for a screening website; this led to a set of common preferences that they believed were likely to engage men across age and deprivation groups and lead to greater screening uptake.The Internet provides opportunities for re-evaluating how we deliver sexual health promotion and engage young men in screening. Interventions using such technology should focus on uptake by age and socioeconomic background. Young people should be engaged as coproducers of intervention materials and websites to ensure messages and content are framed appropriately within a fast-changing environment. Doing so may go some way to addressing the overall lower levels of testing and screening among men compared with women. The Scottish Government website provides an interactive map to identify the SIMD rank of small areas . The 201Men were recruited via a range of non-clinical settings, including workplaces, health and fitness settings, community groups, and further education settings (post-high school age but lower than university level). A mixture of purposive and snowball sampling was used to ensure a heterogeneous sample for a range of characteristics: age, socioeconomic background, and ethnicity. Focus groups were homogenous by age group, ethnicity, and deprivation.Focus groups lasted between 1-2 hours and took place in private spaces made available by our community partners or at the university, with the same facilitator. At the start of each focus group, after consent forms were completed, participants were asked to verbally confirm their postcode. The ensuing focus group discussions focused on knowledge of chlamydia, technology use and attitudes towards smartphones and the Internet, and views on sample screening letters and websites. Focus groups began with participants being asked to describe their knowledge of chlamydia and then technology use, including use of a mobile (cell) phone and the Internet. Participants were invited to reflect on the amount of access they had to, and their use of, such technologies, how private their use was, and their desire for more or less technology use. Insights were then gained from men about their willingness to participate in a proactive screening approach, which made use of the Internet and postal testing kits. To facilitate these discussions, we described the proposed proactive approach to screening as shown in Young men were first shown three sample screening invitation letters (each were different in order to elicit their style and content preferences) to be sent from GPs , or via a central register, and then a sample postal test kit, before being shown on a laptop existing UK-based websites offering chlamydia screening. Five sites were shown, with each chosen to present a range of styles and content for the men to comment on their preferences see . A semi-Group discussions were audio-recorded and transcribed verbatim and checked. QSR NVivo 10 was used to facilitate analysis. Transcripts were read repeatedly by the researcher and a thematic coding framework was developed as a collaborative effort within the research team (including KL and LM); we then used the “Framework” approach, where data are coded, indexed, and charted systematically, then organized using a matrix or framework . The fivEthical approval was obtained from Glasgow Caledonian University School of Health and Life Sciences Ethics Committee. Participants provided written informed consent and permission for the discussion to be audio-recorded and received a £10 (US$16) payment for their time, in the form of a voucher, which they could spend in a variety of shops.Illustrative quotes are used throughout indicating the focus group, age, and deprivation category of the respondents.Fifteen focus groups were conducted with men aged 16-24 years , with a minimum of 3 and maximum of 5 participants in the groups. The young men were sociodemographically diverse and most groups consisted of pre-existing friendship or work networks. In only one group did the participants not know each other. Young men were invited to describe their use of technology, particularly their phone and Internet usage. While most men used the Internet every day, their use was heterogeneous in terms of individual practices using new technologies. All participants used a mobile phone and most phones were Internet-enabled , with only two men having a phone with no Internet function, but with Internet access elsewhere. Most men described “being online” for a few hours each day, including frequent Internet browsing on their phone , as well as computer-based game play and browsing to socialize. Some described infrequent Internet usage, whether on a phone or computer, for activities such as checking email and browsing websites. Nevertheless, almost every man reported using Facebook on a daily basis.While there were some differences in Internet use between groups from areas of high and low deprivation, our comparative analysis revealed the strongest difference in technology-based practices was between the younger and older age groups (16-19 and 20-24 years). Almost every 20-24 year old reported having Internet access on his mobile phone and often used a more technical language during their discussions, mentioning IP addresses, firewalls, torrents (a computer file that contains metadata about files and folders to be distributed), which was something the younger respondents did not mention. This perhaps suggests greater use and familiarity with these technologies, and therefore integration in their lives, among the older men.I’m doing alright. I’ve now got ten things in my house connected to the Internet. I’ve got one more thing, I’ve got a tablet now...two computers, X-Box, PlayStation, two phones, tablet, PSP [PlayStation Portable], Kindle…Focus Group 8, 20-24, non-deprivedWe identified three themes related to barriers and facilitators to successful implementation of an Internet-based screening program from the young men’s discussions: acceptability of proactive screening, confidentiality and privacy concerns, and language, style, and content.Overall, almost all of the young men considered an Internet-based screening approach to be acceptable and suggested they would use it, if it were offered to them. Participants described feeling inclined to be screened using this approach due to their perceptions of the ease and convenience with which they could be tested. In particular, they could avoid visiting a clinic and/or taking time off from work or education to do so.The anonymous part of this is just brilliant compared to having to sit [at a clinic].Male 1, Focus Group 7, 20-24, non-deprivedIf I had to do it, if I was going to be, see myself round and I needed to get tested, I would choose this option [Internet screening] over going to the GP or the clinic.Male 3, Focus Group 7, 20-24, non-deprivedHowever, these aspects were not valued by all, as a few teenage men in a group drawn from a deprived, semi-rural area thought clinic attendance would provide them with quicker access to a test.I probably wouldn’t even use it [test kit]. I’d probably just get the bus up to [sexual health clinic] and let them give me a check-up.Male 4, Focus Group 2, 16-19, deprivedNo, I would just go to the clinic. I’d just rather do it than go online and need to wait. Just get it done there.Male 5, Focus Group 2, 16-19, deprivedThese men spoke of a nearby clinic offering convenience due to its location and their experience of attending gave them familiarity with the service, which they did not have for an online service. Nevertheless, these men spoke favorably of an Internet-based approach for “others”, which means that overall most men found the proposed approach to be acceptable.Participants, across almost all groups, described privacy and confidentiality concerns in relation to most aspects of the proposed Internet-based screening approach. Across these discussions, some men merely sought clarification on the confidentiality that would be offered and had no strong concerns about it. For example, some asked for clarification on the process of receiving their result, expressing a desire to choose the method they felt offered the greatest degree of confidentiality. However, others described possible scenarios of anxiety or conflict arising from being sent a screening invitation letter. One young man, who lived with his parents, envisaged conflict arising between him and his parents if a letter were to arrive for him:If my ma finds it [letter] man, I’ll kill her before she kills me.Male 4Right, so is that an issue then, if your parents find out?Facilitator 1If my mum and dad found out, man, they’d kick me out again.Male 4, Focus Group 1, 16-19, deprivedAnother young man was concerned about his girlfriend assuming the invitation suggested unfaithfulness.Participants wanted screening invitation letters and a screening website to have content that is salient, credible, and straightforward. A degree of personalization was favored, particularly for the letters to be clearly addressed to individuals, so that letters would not be misinterpreted as “junk mail” and discarded without reading. The idea of screening “speaking to them”  emerged strongly across discussions. Indeed, some of the most excitable, animated, and enthusiastic discussions across the groups occurred when men were shown and allowed to browse five sample chlamydia screening websites on a laptop placed in front of them. Most discussions centered upon men’s design and content preferences; the level of detail almost every man provided about font size, color, images, and text was extremely rich. Participants were encouraged to reach a consensus within their groups on their broad design and style preferences, which aggregated across the groups included: careful use of imagery to appeal to a broad spectrum of men; no use of “text speak” ; use of an official health organization logo and colors ; minimal use of informal, chatty, humorous language; simple, straightforward text, presented using minimal length paragraphs; and the use of a “hide” button for privacy (enables the Web page to instantly change to the Google search page or minimizes the window).Some men voiced uncertainty as to whether websites should be “cool” or serious. The following extract from a group discussion illustrates this, with two men attempting to convince a third that chlamydia screening websites should look “serious”:See, the first one [website], I would not type my details.Male 2It’s a graffiti font there. I can’t take that seriously.Male 1Is that how bad websites look like, then?Male 3It’s not about being bad websites, but serving a purpose. In this case, it’s about health, it’s not about being cool, which that website aims…Male 1What’s wrong with being cool?Male 3I think it doesn’t tie in…Male 1So that people have actually…?Male 3Because I think it has to be straight to the point and professional, instead of being cool.Male 1I think if you’re actually thinking about saying what it says, that you’re concerned and you’re worried about it, so you’re not…you’re more about getting straight to business, not like funky websitesMale 2Exactly. If you are worried about this, I think a funky website would be the last thing I would enjoy. So, what you have is chlamydia and they show you pictures of rabbits.Male 1, Focus Group 12, 20-24, deprivedIt was clear that images and use of color invoked more reaction than the text-based content, except for key headings or “tag lines” such as “RU Clear?”. It appeared that men felt patronized by the use of certain images and “text speak”. Men were keen to feel that there was an “authentic” voice in order to avoid discouraging them from engaging in screening—that authentic voice should be from youths rather than adults clearly masquerading as youth. Some men, particularly older and those from non-deprived areas, described STI testing as an adult issue, which led them to believe that the letters and websites should treat men in an adult fashion. Most thought the whole look and feel should be aimed at men around age 25 years to avoid being patronizing.Why do they keep putting, like, “R U” and stuff? I actually don’t know anyone who texts like that anymore.Male 2Just overly, excessively cheesy .Male 1, Focus Group 5, 16-19, non-deprived I would feel quite patronized by that [website 2].Male 2Yeah, absolutely.Male 5You know, I don’t think, like, chlamydia testing should try to make itself cool, really, it’s not…Male 4I’d say the “R U clear” thing’s a bit unnecessary. It’s like, it’s different if you’re seven years old or something, but I think people our age can pick up so quickly or easily, if people are trying to look or an organization is trying to tap into a youth [sic].Male 3, Focus Group 6, 16-19, non-deprivedHowever, most participants acknowledged the difficulty in designing a website that would appeal to all men aged 16-24.In this paper, we analyzed data from 15 focus groups with young men aged 16-24 years (n=60) and drew over half the groups from areas of high deprivation. We identified a number of potential barriers and facilitators to Internet-based chlamydia screening, including: the acceptability of Internet-based screening to the target group, men’s confidentiality and privacy concerns, and language, style, and content across screening materials, including an invitation letter and a website. Our data illustrate the importance of not only taking time to develop messages that are framed appropriately for the target population, but to engage the target population in the design stage. We found levels of disconnect from technology, such as the Internet, among the younger men and men from deprived areas, which suggests that an Internet-based approach to STI screening (whether chlamydia-focused or broadened to include other STIs) may have the potential to widen inequalities in the absence of available, alternative screening opportunities.What men chose to report and to whom has been discussed by others, who report differences in men’s stories according to the gender, ethnicity, or class of the interviewer [We presented sample letters and websites to men with a “real-world” screening context, which means they stated preferences and intentions, rather than actual behaviors. Intentions do not always predict behavior, as shown in a study of acceptance of herpes testing in adolescents and young adults , where merviewer . FurtherOur study focused on men, which necessarily means we offer no comparative analysis with women’s views. Previous work has described men as a hard-to-reach group and found many more women than men providing their views toward the development of a general sexual health website . Our stuOur findings point to the importance of message framing for how men may respond to the provision of a sexual health service, which aligns with recent work in different cultural and policy contexts ,41-43. FMen in our study queried the extent of privacy and confidentiality offered by the screening approach we described, in relation to almost every aspect of the process. Clearly, these issues were of great importance and would be either barriers or facilitators to screening uptake, depending on how they are dealt with by intervention developers and then perceived by men. Apprehensiveness about who will know they sought screening , how people may react to the knowledge they sought screening , and how private their results would remain were of great concern to the men in our study. Clearly, their decision to participate in the screening we proposed would be dependent on them feeling confident that they were being offered the most private and confidential approach possible. The issue of privacy is one that has emerged across various contexts, such as with other Scottish youth , as wellThere are few qualitative studies that seek to obtain the views of youth toward the offer of chlamydia screening and even fewer that focus on the views of young men with which to compare. In our study, men from more deprived areas expressed different views toward technology use and Internet-based chlamydia screening than men from more affluent areas, reporting a lack of interest in engaging with particular technologies. Younger men and those from lower socioeconomic demographics who participated in Internet-based screening in the Netherlands were better reached with reminders by text message than email , althougOur findings point to opportunities to refine the design and content of Internet-based sexual health interventions. For example, it is important that young men perceive a screening approach as offering privacy and confidentiality. This means intervention developers should seek the active involvement of men in the design stages, particularly younger men and those from areas of high deprivation—subgroups of men who have to date largely not been reached to the same level as other groups.Our ability to engage men in this study should direct others to cease simply labelling them as “hard-to-reach”. Although there is a paucity of qualitative studies focusing on young men, work does show that men query the relevance of chlamydia screening to them believing it to be a “woman’s disease” ,53, holdThe findings of this study provide timely and important data on the benefits and challenges of Internet-based STI screening, within a context of no national screening program, poor engagement with men in screening, and challenges in engaging men from deprived areas. Although we have shown that an Internet-based approach has potential and technology is increasingly becoming integral to people’s lives, clearly some men engage with it more than others. Technology opens up opportunities for rethinking how we deliver sexual health services to young people, but we should be careful not to widen inequalities; we should consider carefully how to engage various groups of men and ensure we do not promote “one-size-fits-all” screening approaches.


In August 2010 an iceberg four times the size of Manhattan broke off Greenland’s northwestern coast and began drifting out to the sea. At nearly 100 square miles, this was the largest iceberg to appear in Arctic waters since 1962 and a fresh indicator that Greenland’s frozen landscape is undergoing significant changes.1Originally part of the much larger Petermann glacier, which flows down from Greenland’s interior into a coastal fjord, the iceberg detached for unknown reasons. It could be that ordinary glacial dynamics were at work, and indeed, Petermann glacier “calves” (breaks off) icebergs routinely, although generally not ones so large as this. But the unusual size of the iceberg also might signal a response to global warming, and that’s what worries scientists.Accelerated melting of the glaciers and other frozen masses that make up Earth’s cryosphere has become a widespread phenomenon. Apart from what’s happening in Greenland, coastal glaciers also are thinning off West Antarctica, where an enormous ice sheet containing enough water to raise sea level by more than 20 feet has attracted growing concern. Meanwhile, a vast percentage of the world’s land-based glaciers also are in retreat, according to Richard Armstrong, a senior research scientist at the National Snow and Ice Data Center (NSIDC) at the University of Colorado, Boulder.“There’s a lot of regional variation, so there are some exceptions to the trend,” Armstrong says. “But in general, the Earth is warming, and glaciers are shrinking in most areas.” Likewise, the human health implications of the world’s changing ice cover vary regionally.Glacial retreat is often described as global warming’s most visually compelling manifestation. But the influence of climate on the cryosphere doesn’t lend itself to simple generalizations. Glaciers, ice sheets, and seasonal snowpack are part of an exceedingly complex climate system with many unknowns.Beata Csatho, an associate professor of geophysics at the State University of New York at Buffalo, says glaciology is just now emerging from an observational phase dominated by data collection. Scientists have only now begun to model these data to project future trends, she says. But uncertainty about how the cryosphere responds to climate change can be frustrating to those in the public who want definitive answers to either support or reject assumptions about global warming. That puts glaciologists in an uncomfortable position, pushed to supply conclusions prematurely and besieged by misconceptions.Skeptics who cite one or two advancing glaciers as evidence that humans don’t have an impact on climate are likely overstating their case, says Jeffrey Kargel, a University of Arizona glaciologist. The near-unanimous scientific consensus—including the opinion even of most climate change skeptics—is that anthropogenic greenhouse gas emissions have likely accelerated an ongoing warming trend, although by how much isn’t clear.4Some scientists are concerned that if warming continues, the global meltdown could cause catastrophic effects. Sea level is already rising at an accelerated rate—a global average of 0.1 inch per year between 1993 and 2003, according to the United Nations Intergovernmental Panel on Climate Change (IPCC), nearly twice the average annual rise over the longer period of 1961 to 2003.The IPCC has projected a rise in sea level of anywhere from 7 inches to 2 feet by the end of this century.The fastest warming rates are in the Arctic, where temperatures are increasing at twice the global average.9According to Walt Meier, a research scientist at the NSIDC, high Arctic warming rates can be explained by a reflective phenomenon known as albedo: melting sea ice exposes dark ocean surfaces, which absorb sunlight instead of reflecting it back into space. Oceans retain that warmth and then transfer it back to the atmosphere. “And that sets up a vicious cycle,” Meier explains. “More melting, followed by more ocean warming, followed by more warming of the air.”The consequences are clearly evident in satellite imagery that shows Arctic sea ice decreasing by about 9% per decade since 1979. In September of that year, Arctic sea ice covered slightly more than 3 million square miles, an area roughly equal to that of the lower 48 states, Meier says. By September 2010, the sea ice had dwindled to roughly 1.8 million square miles.10Meanwhile, climate change appears to exert a mysterious influence on how Arctic winds and ocean currents interact, says Hamish Pritchard, a scientist with the British Antarctic Survey in Cambridge, UK. And as Arctic winds change in direction and speed, he says, they’re somehow drawing warmer ocean currents closer to Greenland’s coast, where glaciers that buttress the island’s massive ice sheet spill into the sea.Glaciers that gain as much mass from snow as they lose from calving icebergs are said to be in equilibrium. But if calving dominates over the accumulation of new mass, which Pritchard says is the case in Greenland now, then seawater can intrude where coastal glaciers attach themselves to land. “Ice always melts when it’s in contact with seawater, and that erodes the glacier’s frontal regions,” Pritchard says. Eric Rignot, an earth scientist at the University of California, Irvine, recently documented that Greenland’s coastal glaciers are melting 100 times faster at their floating end points than they are on land.11At the same time, warming air is degrading the island’s ice sheet from above. Around 10 years ago, scientists discovered that “moulins,” or narrow channels in the ice sheet, were draining unexpectedly large amounts of summer meltwater from the surface of the ice toward the underlying ground. And as that water accumulates below the ice sheet, sections of the ice lift off the ground and start flowing rapidly toward the coast, explains Gordon Hamilton, an associate research professor at the University of Maine, Orono.The IPCC did not consider this “moulin effect” when, in its 2007 assessment report, it predicted that sea level might rise by as much as 2 feet by 2099.Summer meltwater isn’t currently so much an issue in Antarctica, which is so far south that the majority of its ice sheet stays frozen all year.  Separated from West Antarctica by the Trans-Antarctic Mountains, the East Antarctic ice sheet is the largest ice mass on the planet, contains enough water to raise sea level by almost 200 feet. But East Antarctica’s ice sheet rests on an enormous landmass above present-day sea level and is generally considered stable, according to Claire Parkinson, a climatologist with the National Aeronautics and Space Administration.The West Antarctic ice sheet, however, rests on a landmass grounded roughly a mile below sea level, meaning that if the ice sheet wasn’t there, it would be replaced by a deep ocean. And that makes it vulnerable to encroaching seawater that could speed its disintegration.Both of West Antarctica’s biggest ice shelves—namely, the Ross ice shelf to the west and the Ronne-Filchner ice shelf to the east—appear stable at this point, Parkinson says. Yet according to Pritchard, glaciers along West Antarctica’s midpoint are thinning at an accelerated pace: the Pine Island glacier is thinning by up to 18 feet per year, the neighboring Smith glacier by 27 feet per year, and the Thwaites glacier by 12 feet per year.13Other nearby glaciers also are thinning from what Ted Scambos, a glaciologist with the NSIDC, says is an influx of deep, warm ocean water pushed toward the coast by changing wind patterns. That dynamic, he says, results in part from the Southern Hemisphere’s ozone hole, which allows for regional warming in the upper atmosphere that, in turn, influences local air currents.14According to Csatho, ice shelf losses in the West Antarctic are partly offset by strong gains from snowfall in some inland areas, so the degree to which the ice sheet might be imperiled isn’t clear. “But if the ice shelves do collapse, then portions of the ice sheet are at greatly increased danger of flowing into the ocean,” Parkinson adds.Scientists first considered this possibility in 1968, when the late John Mercer, a professor at The Ohio State University, predicted that global warming caused in part by industrial pollution might destroy West Antarctica’s ice shelves and allow its ice sheet to flow toward the coast.10The collapsing Larsen ice shelves had no effect on sea level, given that they were already floating and displacing water, according to Scambos. What’s significant is that when the ice shelves disappeared, land-based glaciers behind them began moving faster toward the coast, just as Mercer predicted. Scambos says there isn’t enough land ice on the Antarctic Peninsula to raise sea level appreciably. The Thwaites, Pine Island, and Smith glaciers are a different story, however, given that the West Antarctic ice sheet—with its capacity for a more catastrophic rise in sea level—lies behind them.No one knows how high the global sea level will rise in coming decades or how many people will be affected, although small island nations and coastal areas are expected to bear the brunt of the impact.18Excessive glacial runoff can pool in downstream areas and create lakes that appear and then disappear from one year to the next. And when these lakes breach, the resulting GLOFs endanger local lives and infrastructure. “In March 2006, an avalanche fell from the Quelccaya ice cap into one of these lakes and created a mini-tsunami that breached a dam and flooded the entire valley below,” says Lonnie Thompson, a glaciologist and professor at The Ohio State University. The Quelccaya ice cap of Peru is the largest tropical ice mass in the world.Should the Andean glaciers disappear altogether, Thompson adds, Peru’s population could face an opposite problem: significant water shortages. Indeed, the “zero-degree isotherm,” or the altitude at which snow begins to melt, has climbed to higher elevations at earlier time points in spring, reflecting a steadily warming climate.That’s already happening now in Peru, where many populations rely on meltwater from Andean glaciers for domestic and industrial water needs.Similarly, communities in the Southwestern United States rely on meltwater from the Sierra Nevada snowpack, which forms every year in the mountains that define California’s eastern border. The Sierra Nevada snowpack begins to accumulate in October, peaks around April, and then melts entirely. When rainfall decreases in summer, meltwater makes up the shortfall, draining into reservoirs and contributing a significant fraction to water supplies throughout the Western states.21According to research by Sarah Kapnick, a PhD candidate in atmospheric and oceanic sciences at the University of California, Los Angeles, the Sierra Nevada snowpack has been trending toward an earlier peak by about 0.6 day per decade since 1930, such that it starts melting almost a week sooner now than it did 80 years ago.Apart from the southwestern United States and Peru, it’s not clear where retreating ice masses could affect local water supplies. It is said that 1.3 billion people in Southern Asia might face a risk, given widespread glacial retreat in the Eastern Himalayas.3However, in March 2010, Alford and Armstrong completed a study for the World Bank that suggests the IPCC likely overstated its conclusion.Regional variation makes it hard to predict how water supplies originating in the Himalayas will respond to climate change. Even as glaciers retreat in its eastern ranges, those in the west—given that they reside at higher altitudes where temperatures don’t fall below freezing—are stable or advancing. “The wild card is precipitation,” says Armstrong. “Most of the climate models are pretty consistent on temperature increases with rising greenhouse gas [levels], but they fall apart when it comes to precipitation—some show more and others less with climate change depending on location. And if you get more precipitation, it would fall as snow above the freezing level, and you could wind up with increasing glacier mass at higher elevations.”Armstrong’s point illustrates an essential problem: although climate change has global consequences, it manifests in different ways depending on regional features. And that complexity leaves interpretations of its cause and future impacts open to debate, even to attack.But look at the global system as a whole, Scambos emphasizes, and a fundamental truth emerges. “Virtually every glacial region on Earth is in retreat, as are [ice masses] on both of the poles,” he says. And that gives us a consistent picture that hangs together well—this is happening at the same time that the oceans, land, and air are also warming.”


Objective. This study assessed the initial experiences, symptoms, and actions of patients in Ethiopia ultimately determined to have breast cancer. Methods. 69 participants in a comprehensive breast cancer treatment program at the main national cancer hospital in Ethiopia were interviewed using mixed qualitative and quantitative approaches. Participants' narratives of their initial cancer experience were coded and analyzed for themes around their symptoms, time to seeking advice, triggers for action, and contextual factors. The assessment was approved by the Addis Ababa University Faculty of Medicine Institutional Review Board. Results. Nearly all women first noticed lumps, though few sought medical advice within the first year (average time to action: 1.5 years). Eventually, changes in their symptoms motivated most participants to seek advice. Most participants did not think the initial lump would be cancer, nor was a lump of any particular concern until symptoms changed. Conclusion. Given the frequency with which lumps are the first symptom noticed, raising awareness among participants that lumps should trigger medical consultation could contribute significantly to more rapid medical advice-seeking among women in Ethiopia. Primary care sites should be trained and equipped to offer evaluation of lumps so that women can be referred appropriately for assessment if needed. Breast cancer is an increasingly visible disease, and a rapidly growing cause of mortality, in developing countries . In AfriIn Ethiopia, breast cancer is typically a fatal disease with high mortality , 5, unliThis evaluation includes a qualitative and quantitative assessment of the experience of participants with breast cancer who, ultimately, successfully accessed the services of the Ethiopia Breast Cancer Project (EBCP) and reports on their recognition of symptoms, their attitudes upon noticing those symptoms, and their motivations for and experiences with taking action.This project focuses upon women who accessed care through the Ethiopia Breast Cancer Project (EBCP). EBCP aims to strengthen human resource capacity, technical competency, and advocacy and improve access to treatment for breast cancer in Ethiopia, working closely with all related departments and services of Tikur Anbessa Hospital (TAH), the Ministry of Health, and the Ethiopian Cancer Association . PatientInterviewers were fluent in written and spoken Amharic and English and sequentially identified EBCP program participants to interview over a one-month span. Informed, verbal consent was obtained prior to interviewing. Interviewers participated in a one-day training session that included: study overview, ethical conduct of research, role play, and pilot test interviews and review. The teams debriefed each day with investigators for major points and discussion items for the group. Qualitative data was analyzed through theme analysis predominantly using ATLAS.ti, Version 5.5 , and quantitative data was analyzed using JMP, Version 8 . Where necessary, translated English grammar in direct quotes is corrected from transcriptions to ease readability and where necessary, placed in the first person context, though content remains unchanged.In total, 55 patients directly participated in the study, in addition to 14 proxies  representing other patients, for a total of 69 patients represented. Most participants were married and female, and more than half were age 50 years or younger. About two-thirds of participants lived in Addis Ababa, and almost three-quarters of the population was Ethiopian Orthodox. Two-thirds of the participants were diagnosed with breast cancer in the immediate two years prior to the assessment. The average interview lasted 41 minutes. When compared to the clinic treatment population for the first half of 2008 from EBCP programmatic data (unpublished), the study sample did not differ significantly from the clinic treatment population on any of the following parameters: age, gender, or residence of patient.Participants were asked in an open-ended way to tell their story of how they came to learn they had breast cancer. If necessary, participants were prompted for relative dates when they first noticed symptoms, when they first accessed care, and their navigation of the care system . These https://www.citiprogram.org/). Participant names were not collected as part of this project, and indirect identifying information was grouped and presented in general categories or in aggregate.This project was reviewed and approved by the Addis Ababa University Faculty of Medicine IRB. Additionally, project team members were trained in research ethics using materials from the CitiProgram ”“I came with my sister in law. She had a lump starting a year back. At first it was painless. Around 6 months later the lump become harder and painful. (Case  56)”“Three years back, I started feeling sharp, tingling kind of pain in my right breast. I went to a nearby clinic and was diagnosed to have a cold, and I started oral medication. Then after some time, I developed a pea-sized hard nodule over the same breast, which was getting bigger at time passed on by. (Case  23)”“I came with my sister. She told me she had a lump on her breast about two years back. We were not worried that much because it was painless. But, starting last year, the lump become painful and we took her to [a clinic]. (Case  28)”Similarly, as shown in “About two years ago, I noticed a small lump on my right breast. I just ignored it, considering it a simple swelling. After a year, I went to [Eastern Ethiopia] where my biggest child lives. I told him that I had a lump on my breast. I think he heard about breast cancer. He immediately took me to nearby clinic… (Case  37)”“I saw a lump on my left breast. It was painless at that time and I thought it will resolve by its own. Finally the lump became harder… it be come [sic] very painful within two years. I went to a health center the physician examined me and told me that it is breast cancer, and I will not live more than 2 months… (Case  41)”Finally, participants indicated that the most common reason for initiating some form of action to address their symptoms —includin“Before 2 years, I started feeling sharp pain over my left breast with a little swelling. But I did not do anything about it or told anybody because I was under the consideration that it will go away by itself. But after about 4 months, I had to go to a nearby health center because the mass was getting bigger and the pain was getting worse. (Case  49)”“Three years back, I started nursing my last child. After 1 month, I started to experience severe pain on my left breast. I went to a physician [who] told me that it is cold and gave me an antibiotic. Three month later I experienced a similar problem and got similar medication. After a month of this medication I noticed a small lump on the same breast. I showed it to my husband, and my sisters they told me that it simple lump and not to worry about it. After 2 and 1/2 years, I met my old friend who works in Addis Ababa as a nurse and I showed her too. She told me to go to the health center and get treated. After doing some investigation it is found to be cancer. I was shocked. (Case  27)”“Two years back, I noticed a small nodule over my left breast but I was not that much concerned about it. Then when I got pregnant in that year, the mass started becoming very painful which forced to seek medical attention. Then I was told that it could be cancer and that I would get the treatment after giving birth. (Case  65)”Clearly, in Ethiopia lumps are the first noticeable signs of breast cancer typically recognized by participants. Almost all of the participants in this study noticed a lump at some point and most participants also dismissed the lump, at first, as nothing to be concerned with. In fact, some participants ignored their lump for several years. In time, participants noticed more lumps or changes in symptoms , and that triggered them to seek advice, from a traditional healer, clinic, or other health care source. A few women were motivated to seek advice from their friends or family, and for some their cancer was discovered in the course of obtaining medical care for something else.Several other studies have similarly found that lumps are the dominant symptom noticed by women with breast cancer and that most women find lumps as their primary symptom –15. FurtStudies also indicate that women in low-resource areas delay seeking care longer than women in other parts of the world, with delays of a year or more from detection of symptom to seeking advice , 15, 17.Notably, this study included participants who, at least eventually, obtained care at the national cancer hospital in Ethiopia. Even among these women who obtained care, delay from noticing to acting on symptoms was considerable. This study is limited in that delay, symptom recognition, and the dynamics of triggers for action are unknown among women not entering the care system in Ethiopia.Given the importance of lumps in initiating the cascade of events that could lead to breast cancer diagnosis, increasing women's knowledge of lumps as a trigger for advice may help reduce the lag time between initial notice of the symptom and eventual action in Ethiopia. Focused public campaigns and other strategies to increase awareness may be effective in promoting action when confronted with a lump . Streng


It is difficult to review the book one is editing. One sees the flaws, having already received comments from colleagues, zoologists and historians of science. But V.I. Motschulsky is such a compelling yet little-known personality that we find it our duty to review the book even though one of us is its editor.Among entomologists, rumors abound that Motschulsky, an outstanding specialist in insect systematics as well as an avid collector, stole beetle specimens from famous collections and argued with his European colleagues. He had a difficult personality. It is no accident that Walter Horn called him “the infernal entomologist.”th century). The translation from German of the biographical and highly biased essay by W. Horn, which was written in the 1920s, is placed in the end of the book.History and natural history are intertwined in the book, which consists in large part of memoirs recorded in Russian and German, and in part of reverse translations of Motschulsky’s articles published in the 1850s–60s mostly in French. The first part is, first and foremost, a history, while the second is largely natural history. . The book recounts the story of a man who impersonated the murdered Emperor Paul . Halfway through the book there appears an authoritative confirmation that Count Araktschejew was, in fact, murdered after stealing the signed letterhead of the late Emperor Alexander I and forging 13 royal decrees (p. 105). Motschulsky purportedly heard this last shocking story directly from Count P.A. Kleinmichel: the book marks its first appearance in scientific literature. Other anecdotes are interspersed among the memoirs. To his credit, Motschulsky had a sober view of the tsarist administration. “Emperor Nicholas exclusively favored the military, whereas members of other professions had to make do elsewise.” (p. 23). “And, given that everyone must serve in the military, and that all young men are groomed exclusively for military service, their remaining talents are stunted. This is truly unfortunate for the empire, because as a result, the landed gentry is weakened, estates are abandoned by their owners and fall into disrepair, families grow destitute, trade is chilled outside of large urban centers, and the country as a whole grows poor.” (p. 23). This is what came of the incompetently run Polish campaign and intrigues and thievery in the Caucasus. It is abundantly clear that the principles and methods of governance in Russia have not changed much since the reign of Nicholas I.PageBreakplan fell through because of his poor health. Instead, he was allowed to go on leave “abroad” even though at that time, trips abroad were largely discouraged. On his return in 1836, Motschulsky was offered to continue serving in St. Petersburg, but he chose to return to the Caucasus. Notwithstanding his heroism and professional acclaim, he was ultimately forced out. Later, after his work in the so-called Kyrgyz steppe and East Siberia, the following happened. “I wanted to join the diplomatic corps, to make use of my knowledge of the East, but the Ministry of Foreign Affairs dragged its feet, delaying for many months and many questionable reasons. Tired of waiting, I decided to accept a position as special envoy for the Committee and Commission for the Construction of the Moscow Railway. Thus, all I had assembled and studied over the course of many years bore no fruit.” (p. 169). And, by way of a bitter recap, “After all, in this country, an educated and honest man can find few ways to earn a living.” (p. 22).It appears that Motschulsky’s career in the military was not very successful, but he did not aim to succeed there. “On one hand, it instilled in me distaste for the unlawful and on the other, honesty, contrary to which I could not act and due to which I often got in trouble given my volatile temper.” (p. 18). For example, “on two occasions, I was demoted due to my temper: the first time, I called our French teacher a scoundrel and the second time, I could not stop laughing at a demented duty officer.” (p. 22). While stationed in the Caucasus, Motschulsky successfully submitted to his superiors a report on “the Persian and Afghan question” and received recognition for it. As a result, he was to be dispatched to Persia, but the Motschulsky’s luck and courage – and even, to a degree, his recklessness – are astounding. Here is an anecdote from the Polish campaign: “A grenade exploded under my horse, and as a result I was thrown in the air but not injured. The horse itself received a mild shrapnel wound. Because we had not eaten anything in two days, one of our Cossacks brought me a pot of beef from camp. My fellow soldiers and I rode off a distance, so as to enjoy the delicacy without running the risk of being shot. We got off our horses, set the pot down on the ground, and sat on the grass, eagerly awaiting a chance to partake of the beef. I reached out with a fork for a piece of beef when we were all covered with a cloud of dust and lost consciousness. The pot and fork disappeared – they were smashed by a ricocheted cannonball. Our food was scattered everywhere in miniscule bits. It appears that we had picked a poor place for a meal.” (p. 40). And here is an account of the Swiss Alps: “When crossing the snowy peaks of Appenzell, we had to walk on very narrow paths, where snow that had melted in the June heat frequently slid out from under our feet. Once, we started slipping downhill – I fell on my back and with terrifying speed began to slide down. But I kept my wits about me and tried to stop my descent, using an iron pick of the kind that every traveler carries. This I succeeded in doing a few feet before the edge of a cliff. Another time, when I slipped and fell in the same area, I was sliding so fast, I could not see anything and everything turned black, when I felt a terrifying jolt resonate through my body. I stopped, my feet pressed against a ridge of rocks and ice that had formed at the edge of a cliff where goats had traveled in the fall – just a couple of feet from a drop of over 250 feet.” (p. 86).Motschulsky’s descriptions of nature and people are full of incisive observations. He describes Caucasian mineral waters; Prince Sevardzelidze, a man of legendary strength; the bazaars of Tiflis; the Georgian temperament; oil spills in Dagestan; Caucasian mountain peaks; and jackals who stole the boots he had treated with cured pig fat, as he slept outside, fearing the fleas that abounded indoors.PageBreakK.M. & S.G.] traveled by boat to inspect it. One of the sailors carelessly lit a pipe, a spark fell, and the island went up in flames. Ménétriés and his men barely managed to save the boat, but the sea was covered in oil and also lit up. They barely made it out, rowing as fast as they could.” (p. 64). Describing Astrakhan and its vicinity, Motschulsky justly notes, “Extracting oil from the islands and coastal regions of the Caspian Sea alone could form a substantial basis for trade if petroleum were adopted for illuminating streets and houses, where it may well replace gas and, even more so, other oils.” (p. 147).At the time of Motschulsky’s early travels, oil was not yet widely used. “In the 1820s, near Sary island in the Caspian Sea, a new island had formed and Mr. Ménétriés . Dinnertime was approaching, and I was helping her with the preparations, fixing the fire, making flatbread, and otherwise assisting with small chores – all was done as in accordance with the highlanders’ customs. In the meantime, I slipped into the fire a pencil I was carrying in my pocket, which, if found, would undoubtedly have costed me my life.” (p. 136). The prisoner was led into a clearing between cliffs and a precipice in the hopes that he would start talking to his travel companions and reveal his purpose. “Knowing quite well that our enemies were watching us, I remained true to my assumed role and, paying no attention to my travel companions, I lay down on the ground and started playing with rocks, putting them in my mouth and spitting them out into the abyss. In the meantime, I was shredding into bits the piece of paper I was carrying in my pocket, chewing and swallowing the bits. Thus, I got rid of a dangerous and incriminating item which contained notes from my travels.  the highlanders came and searched my pockets, where they found a few crushed insects I had gathered along the way, the discovery of which caused uproarious laughter, and which they carefully returned to my pocket.” (p. 136).In fact, beetles saved Motschulsky’s life when he was sent on a reconnaissance mission together with several locals loyal to the Russian government. Pretending to be deaf and dumb, he was captured by highlanders in the Caucasus in 1838. He was “made” when his captors noticed that his hood was stitched in silk, as was customary in Tiflis, and not in wool, as in the mountains. “Suddenly, we were surrounded by highlanders, who took our horses and weapons. They put each of us in a separate hut under guard.” (p. 135). “As soon as I realized what danger I was in, I did not fail to make friends. The The chapter titled “1833. Lithuania. Magnetism” stands out somewhat. In it, Motschulsky encounters magnetism, or lunacy, in his cousin Louisa. This condition, together with Louisa’s youth – Motschulsky planned to marry her upon her recovery – greatly appealed to the scientist. But the marriage did not take place, most likely due to his numerous travels and growing interest in beetles. The chapter remains unfinished, ending literally mid-word.The manuscript containing Motschulsky’s memoirs was illustrated with landscapes and drawings of beetles and other arthropods, but unfortunately, far from all of these illustrations have survived. The book contains all that could be located. Certain peculiarities of Motschulsky’s language should also be kept in mind, for clarity’s sake. For example, he calls robbers predators and beggars the bedraggled.In the introduction, the compiler of the book compares Motschulsky to Paganel, but this fictional geographer and naturalist had not yet been created by Jules Verne and came into existence somewhat later, in 1859. A more accurate comparison might be made to Cousin Benedict, an entomologist, and also a creation of Jules Verne.Despite prolonged – even drawn out – preparations, the book has not been sufficiently edited, and typos have crept in. There is also a noticeable dearth of reference tools: footnotes, index, and list of Latin titles. For example, Motschulsky writes that Lake Baikal supports “a marvelous fish, as large as a ruff, and consisting entirely of fat.” (p. 167). There is no further commentary. Meanwhile, he is apparently speaking of the big Baikal oilfish . Many names and geographic locations are given multiple spellings, which somewhat interferes with reading the book. Regretfully, Latin names are also sloppily written.www.pensoft.net>.It is difficult to describe in a book review our awe and delight with this wonderful book. The author’s language is perfect, albeit somewhat obsolete Russian, while his views are almost modern. We recommend that you read this book for yourself. Orders from abroad can be made through Pensoft Publishers, <Far from all biographic materials of V.I. Motschulsky have been made available to scholars. Research remains to be done in military archives, including his personal file and report on “the Eastern question”. As far as we know, Motschulsky’s business correspondence may still be found in various civil archives in Moscow and St. Petersburg. But an academic biography of our hero is a task for the future.Moscow & St. Petersburg, KMK Scientific Press, 2013. “The Sphere of Eurasia” series, hardbound, 261 pages. ISBN 978-5-87317-921-3. In Russian.


Every year, on Whit Tuesday, pilgrims crowd the small town of Echternach, Luxembourg, to join a Dancing Procession, a tradition, legend has it, rooted in miraculous healings as far back as the 8th century at the site of Saint Willibrord’s sarcophagus. The procession, first mentioned in the city archives in 1497, moves rhythmically, three steps forward, two steps back, and slowly―five steps needed to advance one―the folk dancers, four or five abreast, holding on to each other.Willibrord, known as Saint Witt (Vitus) in Germany and as Saint Guy in France, was an English missionary to Denmark and the Netherlands and the first Bishop of Utrecht, who founded the Benedictine Abbey of Echternach. Word of healings at his graveside spread far and wide: a woman brought there unable to walk left “using her own legs.” A man with fainting spells and tremor in the limbs was cured.Willibrord became the patron saint of patients with neurologic diseases: paresis, epilepsy, and what was then known as choreomania or the “dancing disease,” an epidemic of strange behavior of crowds. They would suddenly form circles and dance to exhaustion, “their limbs jerked and they collapsed snorting, unconscious and frothing.” This epidemic of uncontrolled dancing spread throughout Germany and the Netherlands. Outbreaks also occurred in France and Britain. “Peasants left their ploughs, merchants their workshops, and housewives their domestic duties to join the wild revels.”χορεíα = dance) Sancti Viti and raised it from superstition to a disorder manifested in three types, one of them, chorea naturalis . The dancers were not uniformly hysterical. Some, who exhibited neurologic symptoms of unknown origin, were removed from the procession by the authorities. Others were the relatives and friends of the sick, who danced for the healing of their beloved.Paracelsus (1493‒1541) described the dancing mania as chorea , referred to Saint Vitus’ dance as “that frightening and remarkable though rare disease,” an epidemic in which not just women but men too were afflicted with dancing that went on for weeks. He noted a possible parallel with a peculiar “jumping condition of the limbs,” known to the Arabs and concluded that if this disease is not from the devil, it must come from God himself as punishment.The term Saint Vitus’ dance became popular after early epidemiologist Thomas Sydenham (1624‒1689) used it in his classic description of acute chorea, “St Vitus dance is a sort of convulsion which attacks boys and girls from the tenth year until they have done growing. At first it shows itself by a halting, or rather an unsteady movement of one of the legs, which the patient drags. Then it is seen in the hand of the same side. The patient cannot keep it a moment in its place, whether he lay it upon his breast or any other part of his body. Do what he may, it will be jerked elsewhere convulsively.”The Miracle of Saint Vitus, on this month’s cover, is an account of chorea-like illness. As the clinical features were heterogeneous, Saint Vitus’ dance became an umbrella term for an assortment of kinetic disorders. In this scene, the unknown painter captures for posterity the frightful plight of a person with neurologic illness. Helpless and misunderstood, he awaits a miracle that will loosen his muscles, unlock his mouth, and steady his limbs. At the same time, the painting sheds light on how a saint and his name might have become intricately connected with the activities in Echternach and elsewhere.The martyr Saint Vitus lived in Sicily and was mentioned in historical documents as early as the 5th century. He was one of 14 Holy Helpers, grouped together in the Middle Ages, when the Black Death was spreading throughout Europe decimating the population. These saints were pressed to action because of their healing powers against a variety of disorders, from headache and abdominal pain to bubonic plague. Saint Vitus’ feast day was celebrated by dancing before his statue because he was the patron saint of dancers and entertainers. But he was also the protector of those sick with “unsteady step, trembling limbs, limping knees, bent fingers and hands, paralysed hands, lameness, crookedness, and withering body.” The signs and symptoms mimicked the movements of dance.This Saint Vitus’ early life is clouded in legend. Hagiographic texts describe him as a spiritual and holy child, possessing extraordinary powers, much to the chagrin of his family. During his brief life, he was hounded for his rejection of idolatry and traveled around to escape persecution, all the while performing miracles. He is known for healing Roman Emperor Diocletian’s son, who was thought to be possessed by demons because he twitched uncontrollably. In a singular gesture of ungratefulness the emperor pronounced his son’s cure unholy magic and had Vitus thrown into a cauldron of boiling oil.The Miracle of Saint Vitus was a product of the Nuremberg School, a tradition named after a major artistic and commercial center of the times. The Franconian city, which in its early days had no well-known painter at the helm, at its peak boasted none other than the great Albrecht Dürer. Long and enduring, this artistic tradition encompassed the late Gothic and early Renaissance art of Northern Europe, which was rich and diverse, embracing eastern and western elements and culminating in a Gothic style softened with features from Italian art and the advent of oil painting.“Realism of particulars,” along with symbolism, characteristic elements of Franconian painting, is at work in this theatrical scene. The architectural details place the viewer in a palatial context with stately columns and marble floor, framed on the right by the emperor himself sporting, along with crown and scepter, regal attire richly trimmed at the sleeve and hemline. The onlookers’ expressions reflect the usual: ignorance, curiosity, suspicion, revulsion, fear, mockery.The attendants trying to control and stabilize the emperor’s son recall the “fourteen angels” of the lost children’s prayer from Engelbert Humperdinck’s fairy opera Hansel and Gretel. The angels symbolize the Fourteen Holy Helpers providing assistance to the patient, who falls back as his legs give out under him: “Two my head are guarding, / Two my feet are guiding.” Unable to control his body, he is at their mercy: “Two upon my right hand, / Two upon my left hand.” His face distorted, dystonic mouth frozen, eyes transfixed, he is finished. “Two to whom ‘tis given / To guide my steps to heaven.”At the center of the painting, the young saint outshines the emperor, who seems diminished, secondary, frightened, and helpless, even as he extends the index finger of authority. In this boldly colored room, against the atmospheric perspective beyond the window, the saint is king. He is attentive and focused, one hand touching the patient’s cloth, the other raised in a symbolic gesture.The modern version of Saint Vitus’ dance, Sydenham chorea, the prototype for an autoimmune-mediated chorea following infectious illness, is still characterized by involuntary movements, which “flit and flow unpredictably from one body part to another.” They can be caused by several infections, among them HIV and tuberculosis.The epidemiologic features of neurologic disorders are confusing and rival in complexity the cryptic descriptions of the lives of saints. Diseases of the same cause are expressed differently and those with different cause sometimes look the same, a difficulty also encountered often in the study of emerging infections. While in times past those affected sought the answer in theological miracles, now we sometimes look for scientific miracles, or at least statistical ones.Bizarre behavior, whether frantic or somnolent, is caused by a growing procession of ailments, among them rabies, nodding syndrome, unexplained epidemic epilepsy associated with onchocerciasis, diphtheric polyneuropathy, acute flaccid paralysis, brucellosis, encephalitis, or various fevers of unknown origin. Bizarre behavior still relies for relief on miracles, which today’s science measures as probability . Epidemiologists at a slow but steady pace, generate surveillance data around the globe, three steps forward, two steps back. The hope is to enable patients with neurologic disorders to gain control over their bodies and only dance when they choose to.


Previous studies have found that the decision-making process for stored unused frozen embryos involves much emotional burden influenced by socio-cultural factors. This study aims to ascertain how Japanese patients make a decision on the fate of their frozen embryos: whether to continue storage discard or donate to research.Ten Japanese women who continued storage, 5 who discarded and 16 who donated to research were recruited from our infertility clinic. Tape-recorded interviews were transcribed and analyzed for emergent themes.A model of patients’ decision-making processes for the fate of frozen embryos was developed, with a common emergent theme, “coming to terms with infertility” resulting in either acceptance or postponing acceptance of their infertility. The model consisted of 5 steps: 1) the embryo-transfer moratorium was sustained, 2) the “Mottainai”- embryo and having another child were considered; 3) cost reasonability was taken into account; 4) partner’s opinion was confirmed to finally decide whether to continue or discontinue storage. Those discontinuing, then contemplated 5): the effect of donation. Great emotional conflict was expressed in the theme, steps 2, 4, and 5.Patients’ 5 step decision-making process for the fate of frozen embryos was profoundly affected by various Japanese cultural values and moral standards. At the end of their decision, patients used culturally inherent values and standards to come to terms with their infertility. While there is much philosophical discussion on the moral status of the embryo worldwide, this study, with actual views of patients who own them, will make a significant contribution to empirical ethics from the practical viewpoint. The development of embryo cryopreservation and frozen embryo transfer has been useful for allowing future pregnancy attempts and reducing the risk of multiple pregnancies by limiting the number of embryos transferred . HoweverThe storage period varies amongst countries and institutions. The Japanese Society of Obstetrics and Gynecology (JSOG) regulates the storage limit “until the end of the woman’s reproductive life (without a definite age or clear definition)”  and mostThe emotional burden in making this decision has been reported previously by several studies -14, withOnly a few conceptual models, helpful in understanding the actual process, have been reported, using a qualitative approach ,18,19. PSocio-cultural and demographic factors such as religion, treatment period ,22, ethnIt has been criticized in Japan that patients can hardly bring themselves to express their feelings about embryos in the clinical settings . TherefoThe qualitative research strategy, specifically a semi-structured in-depth interview, was used to explore how patients decide the fate of their cryopreserved embryos. Approval of this study was obtained from the Research Ethics Committee of the University of Tokyo, Graduate School of Medicine.To be included in this study, participants were required to have received IVF treatment at the University of Tokyo Hospital, IVF Center and to have or have had embryos in storage. Upon cryopreservation, a contract is made with the patient at our IVF Center to store the surplus embryos for a period of three years. Approximately one month prior to the expiration date, letters of notice are sent so that the patient can choose from three options: continue storage for another 3 years by paying 70,000 yen ; discard; or donate to research at our institute. If there was no response or in the case of returned mail, the embryos were discarded, according to initial informed consent. Our recruiting letters for interview were sent to those who responded to the letters of notice. Unlike previous studies focusing on disposition, we also interviewed patients who decided to continue. Since patients’ attitudes towards cryopreserved embryos are known to change over time, we specifically interviewed participants who had just recently made a decision regarding the fate of their embryos. Sampling was completed when we reached “theoretical saturation,” and no new or relevant data seem to emerge regarding a category . TherefoInterviews took place between July 2007 and February 2009. All the interviews were conducted by the first author (ST), a certified Obstetrician and Gynaecologist and not directly involved in their treatment. For those who had agreed to be interviewed, an explanation of the objectives and procedures of the research was given, and informed consent was obtained. Semi-structured interviews were carried out in a private room located within the hospital unless otherwise suggested by the participant. Interviews lasted 50 minutes on average and ranged in duration from 32 to 118 minutes.An interview guide, developed from pilot interviews with patients who had yet to make their decision and relevant literature, was used to ensure the objectives of the research were met. The interview guide included questions such as “How did you make your final decision?”, “How do you feel about the options you did not choose?”, “Did you think of the possibility of alternative choices?”, “How does your partner feel about the embryo?”, and “Who else influenced your choice?” We began each interview by asking participants to answer open-ended questions about how they made their decision and what it was like having embryos cryopreserved. Over the course of time and as the analysis of the interviews progressed, the interview questions were altered using constant comparative analysis.All interviews were audio taped and transcribed verbatim. To increase credibility of the themes, the results were discussed at conferences and seminars with physicians, embryologists, nurses, and counsellors involved in IVF. In addition the results were presented to IVF patients at other hospitals who had just made the same decision.All transcripts were analyzed using a qualitative data analysis software program, ATLAS.ti.5.2 . From the first interview, we followed a “grounded theory” approach and the transcripts were coded using open coding (identifying concepts in data), axial coding (relating categories to their subcategories), and selective coding (integrating and refining the theory) . ThroughBased on grounded theory, a model of the decision-making processes for the fate of frozen embryos was developed as shown in Figure All participants, whether or not they had children with treatment, described a consistent difficulty throughout this entire decision-making process, with confronting their infertility due to the embryo having “Mottainai” value, also a critical factor in Step 2. This was since most believe that these embryos were their only means of conception, such that discontinuing storage was directly related to “the loss of lifetime fertility.” The embryos represented a belief that the patient was nearly a “normal” woman capable of conceiving when desired. Therefore, prior to the letter of notice, with or without having a child, infertility seems like a distant problem. However, a participant who had successfully had a child said:Receiving that letter was like a bell telling my time to conceive is over, lost in the battle of conception. I know I shouldn’t think this way, but having those embryos is like having insurance to my fertility. Normal women do not have to opt to terminate their conception and my infertility stigma revisited.""So, sense of being “infertile” remained with them despite having a child after IVF.Many participants described relief once the decision to continue cryopreservation was made, since they were able to postpone or avoid infertility acceptance for another 3 years. Some valued the “Mottainai”-embryos so much, even after a having a child that they wished to store indefinitely, if allowed:The decision is made now and I’m at ease. It’s not like there is ‘no hope’, I’m not completely infertile…. The next decision (discontinuing storage) is so horrifying that I wish to continue storage until I die.""There was also an inner shame associated with disposal of embryos because many infertile couples, at one time considered their peers, are not so privileged to even make that decision:Discarding is too “Mottainai” considering waste of all the hardships attaining it and inconsiderate to those patients who could not even reach that point of having embryos.""Therefore, the embryo was “Mottainai” since it is more than one deserves as well as wasteful of “what alleviates feeling stigmatized as an infertile woman.” Furthermore, many participants mentioned their male partner not feeling this conflicted regardless of which partner was responsible for the infertility issue, which lead to their inability to mutually understand the psychological burden.Those who discontinued accepted their infertility by seeking ways to overcome their emotional burden. Participants adopted several coping styles, including sublimation; letting go; and “Kuyo” . Donating to research became sublimation of guilt for not utilizing their “Mottainai” embryo. By helping IVF children and other infertile couples, as they once were, was “an ideal end to their infertility story.” As a participant expressed her relief:I don’t know what I would have done if the option to donate was unavailable. Such a perfect reason, now I can be glad that I had the IVF experience.""For many discarding stored embryos equated to liberation from the entire infertility experience. Participants expressed discarding as “letting go”, so to move forward to a world unrelated to infertility by detaching themselves from their “Mottainai”-embryo.go-en (fate and fortune),” and “a symbol for hardships of IVF treatment.” So, “Kuyo” was utilized not only to overcome the emotional burden of discarding the embryo, but also to accept infertility:Others had alternate ways as “Kuyo,” a memorial service for the dead or things no longer used, and as a method to pay tribute for their effort during their activity . As in tI feel the need for a ‘Kuyo’ for those embryos of course, but rather for myself to console the burden of having to receive infertility treatment and having to make this decision.""Here, after a successful pregnancy, or while ceasing treatment, child bearing and rearing, work or daily life become so important to the patient that embryos in storage become of secondary importance, inhibiting embryo transfer to the uterus. Eagerness towards pregnancy and expectations towards the embryo are decreased, compared with behavior during treatment. As one claimed, “Child rearing was so unexpectedly hard” that they “almost forgot the happiness of having the embryo or pregnancy using it.” However, participants kept the embryos in storage since they afford, “a chance of another pregnancy attained while undergoing treatment hardships.” Having the embryos was often expressed as “insurance” for their fertility, leaving the embryo to be transferred to the uterus in moratorium. Participants prolonged this “embryo-transfer moratorium” state, and remained indecisive about embryo utilization prior to the letter of notice. Simultaneously, during this state, the patients felt two profound pressures to make a decision about their embryos. First, a time limit: storage time and age limitation for child bearing and rearing, which may be set by themselves, family or physicians. Second, the perceived pressure of having another child: requests of a sibling from their own child, and culturally specific social pressures of an only child. The arriving letter of notice initiates the decision-making process, or acts to break the ice associated with this indecisive state:I went as far as IVF to make the embryo. I knew my responsibilities to think hard. Time just passed, friends getting pregnant again, made think more. Finally, that letter arrived; I HAD to think more intently.""After the letter of notice arrived, all patients began considering the significance of the embryo to themselves, the “Mottainai”-embryo, as well as having another child by embryo-transfer in the future. Some considered the “Mottainai”-embryo foremost, while others started from thinking about having another child. The word, “Mottainai,” was used without the researchers introducing the word.go-en (fate and fortune),” and “a symbol for hardships of IVF treatment.” The psychological burden involved in discontinuing or continuing storage, the embryo’s relationship to the existing child, and the cryopreservation technique were all evaluated to determine the worthiness of transferring or storing the embryos. Some claimed a lack of information regarding their embryos, particularly concerning the quality, quantity and the probability of implantation, made this evaluation difficult. Five of the participants actually visited our clinic for this information.In addition to the embryo meaning “lifetime fertility” to the participants discussed earlier, the embryo was “Mottainai,” since they were “life, child, and a part of themselves,” “what came to them linked by The value of the embryo was affirmed and the desire expressed to store it with the hope of possible future transfer if the participant felt that the burden of disposal could not be withstood; the embryo (as a sibling of the existing child) would have high pregnancy potential; and/or gratitude toward, and understanding of, the cryopreservation technique:They were created and disposed from the parental ego… It is too “Mottainai” that not returning it to where it belongs- the womb- will leave me as guilty if I had an abortion.""At this point, the participants then considered having another child in the future.In contrast, if patients felt that having the embryo remain in storage was a burden (from fear the existing child may discover their mode of conception and obligations remaining towards the embryo), and they felt that the embryo as “unnatural” becoming a sibling of the existing child, the embryos were considered unworthy of transfer:Freezing, thawing and returning it: the entire process so abnormal and unnatural. Though they are mine and are “Mottainai”, it is better if the embryos are made more naturally…. not this way.""Participants also rationalized that the embryos with high pregnancy potential had been somehow consumed and used up by the existing child since embryo transfers are performed using the better ones. However, some patients in the study displayed strong ambivalence because of a sense of guilt assumed because the embryo is “Mottainai.” This resulted in then contemplating the possibility of having another child in the future.When considering the use of “Mottainai”-embryos, participants appeared to reconfirm their family planning, re-evaluate the IVF experience from their initial decision to receive IVF up to child rearing, and review the feelings towards embryo-transfer as a mode of conception. Many solicited advice from physicians and other family members to confirm their physical capability and availability of child support for another treatment.Having another child in the future was believed to be plausible if their family was felt to be incomplete and if their IVF experience was perceived positive, alongside ongoing support from other family members. These participants felt that embryo-transfer was their only means of conception.Conversely, another child was undesired if their family planning was felt to be complete, their IVF experience was perceived negatively, and if there was a lack of support from family members or peers:Underneath, I have always perceived my child as different from ‘normal’ children, a result of IVF, and as that embryo. So, this time, I want to get pregnant, normally, and naturally.""These participants felt embryo-transfer unnecessary or not plausible because of a preceding natural pregnancy or being diagnosed incapable of having another child. Many wished for child support within the hospital and counselling (both not offered) in order to go through IVF treatment again.For those wanting another child, if the “Mottainai”-embryos were worthy of transfer and storage, cost reasonability was then considered (step 3) with continuation of storage in mind. This decision was expressed as similar to “picking up a child left at the hospital”. On the contrary, for those not wanting another child, the “Mottainai”-embryos were deemed unworthy, participants directly went to step 4 with discontinuation in mind, and without much consideration to cost (step 3). These participants generally felt guilty for making surplus embryos initially, but often expressed this decision “as inevitable having received IVF.”However, those not wanting another child, but who still considered the “Mottainai”-embryo worthy, were hesitant to make a decision and fluctuated between the two concerns: the “Mottainai”-embryo and another child:It is improbable that I would receive an embryo transfer to have another child, but at the same time, seeing my child now I feel resistant that a part of me, a child of mine, will be discarded by my word ‘discontinue.’ I feel as though I will be in this muddle forever.""This involved such an emotional conflict that some hoped for alternative choices, such as creating a “storage cemetery,” or donation to other couples, which is prohibited in Japan . These pWith continuation in mind, or a hesitancy to decide, participants appeared to contemplate whether the storage cost of 70,000 yen was reasonable for “fertility insurance” or as just storage. Those who felt the cost reasonable- since it was “not a matter of money, as much as an investment for hope”- went to step 4, thinking continuation. On the other hand, participants who felt the cost unreasonable, since it was “like gambling considering such low successful outcomes of transfer,” went to step 4, thinking discontinuation. Those who wanted to continue but could not due to the cost, suggested alternative ways: a contingency fee (paying only when the transfer outcome is a successful pregnancy) or a fee covered by medical insurance. Both are not possible options in Japan.All participants indicated that once their decision was roughly made, their male partner’s opinion was then confirmed. The participants reported that their partners appeared to have undergone the same thought processes although with less psychological burden since they were less attached to the “Mottainai”-embryo. This difference, originating from the initial decision to undergo IVF, was explained as men not “having to experience pregnancy” or “having to observe the entire process of IVF.” Some even expressed marital distress due to this difference.When in disagreement, discussions began concerning the decision to have another child, to go through treatment again or to discontinue storage, involving a great deal of emotional conflict and strain. Participants often felt the need for more time to decide with their male partner and expressed the wish that the letter had come earlier, though the letters typically arrive one month before storage expiration date.Continuation was chosen if the patient persuaded the male partner that the emotional burden of discontinuing the cryopreservation of the embryo was unbearable, or if she is successfully persuaded her desires for another child on the condition that the partner offered more child support:I didn’t want another child for he was so uncooperative with this child. But he convinced me that he’d help and now I can be optimistic to have another.""Also, continuation was chosen if an agreement could not be reached. To postpone the decision:It isn’t just an embryo to me, so I couldn’t give it up. Finally, he gave in saying that he ‘cannot feel the same way as before’ about the next step. So no embryo-transfer, just continue storage.""This discrepancy towards continuation appeared to be related to “coming to terms with infertility” mentioned earlier. Therefore, after the decision to continue was made, participants reported feeling at ease, at least for the time being, though some felt already scared of having to make a decision again 3 years later.On the other hand, discontinuation was accepted reluctantly if the patient was persuaded the male partner that another child was not desired because of insufficient child support during treatment, or if the patient was persuaded to believe that embryo-transfer was unnecessary or natural pregnancy preferred:Really, though I am sorry towards those embryos, I still want to keep them. My husband is evermore against me going through the IVF process again, though.""Another patient in the study felt that her partner accepted discontinuation by understanding that the simultaneous burden of treatment and having another child would be heavier:In truth, he wants another, a boy. But it is hard for him to keep saying that, because he understands the burden of treatment is more upon the woman.""Some participants reported having difficulty in achieving an agreement, wishing that the option of embryo donation to other infertile couples were permitted, because of the guilt of non-use.If in agreement, or if the decision was left up to the participant (since the burden of IVF was perceived to be more the woman’s), the decision to either continue or discontinue storage was made quickly.From this point onward, the patient and her partner were deciding together. Those who had decided to discontinue storage contemplated research donation since all participants were hesitant about discarding their “Mottainai”-embryo. As one participant expressed, in a raised voice:It is a symbol of my hardship: it is a crystallization of my blood, sweat, and tears! I cannot just throw it away!""Patients and partners who had a negative image towards research  described the research as untrustworthy, unclear and cumbersome with formalities. These couples chose to discard to avoid “another evil deed” or to “disrespect” the “Mottainai”-embryo:He saw it as making zombies or mummies, the dead forced to come to life. Better to discard, but just remember that our kids exist because of the embryos.""If the patient’s image of research was positive, she viewed it as making the best use of the “Mottainai”-embryo: as a way to restore the life of the “Mottainai”-embryo; and/or to identify IVF specific risk factors for the existing IVF child. Accordingly, donation was chosen. For these patients, donation was an expression of gratitude towards assisted reproductive technologies- their contribution to society- and some even felt salvaged from the guilt of not giving birth by donating to infertility research. One participant, who previously did not want to discontinue storage, expressed her relief:I can give up now. I didn’t discard, but dedicated my child and my IVF experience to the hospital.""Though varied in degree, all participants wished for a memoir of their embryo, such as a photo of the embryo or a copy of the research article published in which their embryos were used as material.This is the first conceptual model from a non-western country, made on the decision making process for the fate of cryopreserved embryos with 3 options: to continue storage, to discard or to donate to research. In addition to the burden on those who disposed, as shown in the previous studies, those who chose to continue storage also felt great emotional burden. In this study, we found new factors associated with this emotional burden different from those previously elucidated. Emergent throughout the entire process, “coming to terms with infertility” was a central theme, which made the decision very difficult for many women. This was since the embryo had a unique value, “Mottainai”, determined to be of critical importance to Japanese infertile women deciding the fate of their cryopreserved embryos. Since these burdens becomes more severe by letter of notice, it is ethically important for medical staff to give informed consent as to how one’s feeling towards the embryos may change overtime at the time of its making to well prepare the patients. In the following paragraphs, we discuss the common emergent theme, the “Mottainai”-embryo, and the steps in the model involving emotional burden.th century [Previous studies have indicated the embryo’s moral status, its existence as a person  or not, as being one of the major causes of emotional burden ,15,18-20 century . “Mottai century . TherefoThe meaning of “wastefulness” in “Mottainai” overlaps with the West, as getting “some use out of them” when donation to research is selected . But ourIn step 2, having another child in the future and the “Mottainai”-embryo were weighed in an attempt to complement each other, potentially causing much emotional strain for those who do not necessary want another child but could not decide to dispose of their embryo. In line with the previous studies ,16: the The importance of partner opinion confirmation was one of the most important decision making steps for women. Little discussion took place until then, so many couples appeared conflicted when presented with the topic. As with “coming to terms with infertility, and in line with a previous study  their maEmotional burden in Step 5 was felt mainly by those who discarded their embryos, since all who chose to discard did so while feeling conflicted about the decision. As with previous studies, reasons for not donating were lack of confidence in medical science ,16; the Positively, those who donated felt alleviated from the guilt and shame of disposal of the “Mottainai” embryos. This effect has not been reported previously, however, a similar effect was seen in women opting to donate aborted fetuses for fetal tissue transplant, in order to alleviate the guilt of having an abortion . Many ofDespite many of our participants having had successful outcomes, most still viewed themselves as being infertile. Those who experience unwanted infertility are known to take on a “central identity of self as infertile”: viewing themselves as “not normal,” or “different from” fertile women of the same age ,36. How Previous studies have indicated that embryos are symbols of infertility, representing women’s negative infertility experience . HoweverPatients make a decision to dispose of their embryos while coping with not just the loss of their embryo, but also their personal reproductive capability. Sublimation, letting go, and “Kuyo” can be regarded as their strategies for dealing with these simultaneous losses. These strategies, promoting spiritual and physical exercise, might have origins in Japanese culture emphasizes experiential transcendence in order to accept sadness such as loss and change in daily life . Though All participants were sampled from one institution. However, we collected a range of data from participants with various backgrounds and were able to reach a “theoretical saturation” . AnotherIn conclusion, the 5 step decision-making model we describe in this paper with a major theme of “coming to terms with infertility,” makes an empirical contribution to understanding how patients decide the fate of their frozen embryos. We also found burden felt also by those continuing storage. The influence of Japanese moral/cultural values and beliefs were discovered to be central to this process, reflected in the how the embryos were conceptualized, as well as in the 3 strategies adopted to accept their infertility. A unique moral value empirically found in our study, “Mottainai,” gives us a new perspective on the philosophical arguments in medical ethics, mainly focusing on whether the embryo should be deemed a person  or not, and sheds light on the actual issues surrounding infertile women who are faced to make a decision for the fate of their embryos. We have made suggestions for medical professionals and counselors to support not only the decision-making process, but also in assisting patients with their grief, perhaps by respecting patients’ pre-existing cultural beliefs. The results of this study contribute to the development of effective psychological support methods for patients who are uncertain how to decide the fate of their frozen embryos.Misao Fujita, Akihisa Fujimoto, Toshihiro Fujiwara, Tetsu Yano, Osamu Tsutsumi, Yuji Taketani and Akira Akabayashi contributed equally to this workThe authors declare that there are no competing interests.ST and MF were involved in the construction of the study design, data collection and analysis, manuscript drafting and critical discussion. AF, TF, TY, OT and YT were involved in the data collection and critical discussion. AA was involved in the construction of the study design, data analysis, manuscript drafting and critical discussion. All authors read and approved the final manuscript.The pre-publication history for this paper can be accessed here:http://www.biomedcentral.com/1472-6939/13/9/prepub