Although a low health literacy level has been found to be among the most powerful predictors of poor health outcomes, there is very little research focused on assessing and improving the health literacy skills of adolescents, particularly those from socioeconomically disadvantaged backgrounds. The vast majority of existing research focuses solely on reading comprehension, despite the fact that health literacy is actually a multifaceted concept, which entails many different types of skills.The aim of this paper is to first mine existing literature to identify the many different skills that have been posited to constitute health literacy, and then, using this collection of skills as an overarching structure, to highlight the challenges that disadvantaged youth participating in our HackHealth after-school program encounter as they identify and articulate their health-related information needs, search for health-related information online, assess the relevance and credibility of this information, and manage and make use of it.We utilized the design-based research method to design, implement, and revise our HackHealth program. To collect data regarding HackHealth participants’ health literacy skills and associated challenges, we used a variety of methods, including participant observation, surveys, interviews, focus groups, and logging of Web browser activities. We also collected data through specialized instructional activities and data collection forms that we developed for this purpose. Quantitative and qualitative techniques were used to analyze this data, as well as all of the artifacts that each student produced, including their final projects.We identified the various challenges that the 30 HackHealth participants faced in completing various health-related information activities during the course of the program. Based on these findings, we describe important implications for working with youth from socioeconomically disadvantaged backgrounds, how to assess and improve their health literacy skills, and offer specific recommendations for health literacy instruction aimed at this population.With an increased societal focus on health and a shift from viewing patients as passive recipients of medical care to viewing them as active arbiters of their own health, today’s youth need to possess an array of health literacy skills to ensure that they can live long and healthy lives. Working with adolescents to help them develop and practice these skills will also help to break the cycle between poor health literacy and poor health outcomes, thereby reducing health disparities and improving the long-term outlook for the health of our nation. A low level of health literacy has been found to be a stronger predictor of an individual’s health than age, race, education level, employment status, and income . AccordiBut what exactly is health literacy? Due to the dynamic nature of health information, including its format, sources, and potential and actual uses, the definition of health literacy is evolving. Berkman et al  provide According to Lenhart et al, 31% of teenage (aged 12 through 17) Internet users go online to find information about health, dieting, or physical fitness, and about 17% use the Internet to search for health topics that are difficult to discuss, such as drug use, depression, and sexual health. Further, teens from low-income households  are more likely than those from higher income households > $75,000/year) to use the Internet to find health information  ,000/year, as thisIn this study, we unpack the skills  needed to articulate one’s health-related information needs, search for health-related information online, assess the relevance and credibility of this information, and manage and make use of it. We draw from the various literatures that describe components of health literacy . The primary objective of this study is to highlight the challenges that a group of disadvantaged adolescents participating in an after-school program  face in acquiring these skills. We then provide recommendations for facilitating mastery of these skills among this population and share the changes we will make in the next iteration of the HackHealth program.The HackHealth after-school program was designed to devise innovative ways to assist adolescents with health literacy development. HackHealth’s overarching goals are to increase adolescents’ interest in the health sciences, their health information literacy levels, their health-related self-efficacy, and their understanding of the crucial link between their daily health-related behaviors and their ability to maintain their health and prevent disease. Adolescents participating in the 8-week HackHealth program choose a health topic of personal interest, conduct research on this topic using both print and digital resources, create a final product incorporating what they have learned, and then present it to their peers and family members. Our curriculum  focuses on topics such as keyword/query formulation, credibility assessment, topic refinement, and the use of online tools to create final products .To date, the HackHealth program has been conducted in 3 Title I middle schools  in the Health-related websites have become more prevalent and more diverse over the past 2 decades, growing to encompass newer types of content, such as user-generated content found in forums, blogs, and online communities. Adolescents are at an age where independent search becomes more enticing, particularly when their questions pertain to issues that are difficult to discuss -22. UnfoA more tangible challenge to information seeking is the lack of basic access to computers. Without computer access, youth have limited opportunities to experience new open Web technologies, practice online searches, and gain experience with identifying the best search engines for their needs and the sources likely to contain the best information for their purposes ,27. DeveOnce youth locate health-related information, they need skills related to recall, numeracy, visual literacy, relevance assessment, and information integration in order to comprehend what they have found. Numeracy requires such basic knowledge as identifying numbers, but also requires computational, analytical, and statistical knowledge , much ofFinally, once all of these steps have been completed, youth may then apply the information they have located by answering questions, solving problems, making decisions, advocating for others, and/or changing their behaviors based on what they learned during the search ,4,45-52.Due to constant changes in both the landscape of information and communication technology and in the personal, social, and environmental health needs of the individual, health literacy is not a static attribute of an individual, but rather a developmental process that unfolds over time ,50,53. BWe closely examined health literacy definitions and enumerations of associated health literacy skills (and literacies) from articles/resources that offered unique definitions and skills.  in light of the challenges faced by HackHealth participants, and make targeted changes to the ways that we facilitate health literacy instruction. We also hope that our health literacy skills inventory and our revised HackHealth modules can serve as a guide to health educators who work with adolescents.We will also use our health literacy skill inventory  to develThe objective of this study is to identify the challenges that a group of disadvantaged adolescents participating in the HackHealth program encounter in mastering the health literacy bits that we have identified from existing literature . Using t, comprising 7 (23%) boys and 23 (77%) girls. Four (13%) of our participants were in sixth grade, 14 (47%) were in seventh grade, and 12 (40%) were in eighth grade. Of these 30 participants, 20 completed the entire program. The range of ages of participants was 10 to 15 years old, averaging 12.8 (SD = 1.15). The vast majority were 13  or 14  years old. All 30 participants belong to minority groups in the United States: 15 (50%) are Hispanic/Latino, 10 (33.3%) are African American, 4 (13.3%) self-identify as “Other,” and 1 (3.3%) is Asian. A majority  of our participants reported that they have a computer at home, and most  had accessed the Internet from home using at least 1 type of device, such as their own or a parent’s computer, cell phone, and/or tablet.Adolescents are recruited for the HackHealth program by school librarians through school-wide announcements, consultations with health teachers, and referrals by homeroom teachers. A total of 30 students across 3 schools have participated in HackHealthOur approach is informed by design-based research (DBR), which is often used in the learning sciences . DBR entPrior to commencing the HackHealth study, we obtained approval to conduct this study from the University of Maryland’s Institutional Review Board and the school district’s Department of Research and Evaluation. We held an introductory meeting at each school to explain the program to interested adolescents and to distribute parental and student consent forms. At the meeting, we explained the goals of the project, walked the students through the content on the consent forms that they and their parents would need to sign before they could participate, and addressed any questions they had.To obtain a complete description of the health literacy perceptions and practices of our participants, we employed several different data collection methods throughout the 8-week program. Our data collection efforts resulted in a total of 650 pages of materials, 176 pages of observation notes, and 80 hours of audio recordings of our interactions with participants . Interviews and focus group sessions were transcribed in their entirety, and other audio-recorded materials were transcribed as needed.Two members of the research team undertook the data analysis. They began by practicing open coding on a complete data set from 1 participant and all researcher observation notes from 1 week at 1 school. Each researcher developed a personal codebook based on the research goals articulated for the study and the health literacy skills inventory . By compBased on analysis of the data we collected, we highlight the challenges that participants encountered in their health information-seeking, as these challenges reflect the deficits in their health information literacy. Our analysis is structured by the literacy bits outlined in Although our participants were quite accomplished at formulating research questions, they sometimes lacked familiarity with relevant health terminology, which affected their ability to frame and/or refine their questions and to understand and make use of the information they located. Many participants conducted 1 or more definition searches embedded within their information searching processes. For example, 1 researcher described the following regarding her observations of Betty Boop’s information searching processes: “She selected a link to a MedlinePlus article called ‘Infant of diabetic mother.’ She found this article extremely useful; however, it contained several vocabulary words that she was not familiar with, such as ‘bilirubin’ and ‘neonatal polycythemia.’ . . . When she came to words that she didn’t know . . . she would open another tab in the browser and type in the URL bar ‘definition of [fill in the blank].’ For example, she looked up ‘bilirubin’ this way, but said that the definition provided wasn’t useful because it used the word ‘hemoglobin,’ which she also didn’t know. At 1 point, she ended up with multiple tabs open, looking up unfamiliar words contained in the definition of the words she had originally looked up.” [Observation 01/29/2014] This often-multitiered chase after the meanings of unfamiliar health terms frustrated our participants and sometimes caused them to lose focus of their original questions.Another challenge they faced was a lack of familiarity with health terms to use in their initial search queries in order to retrieve accurate, relevant information. For example, Emily was searching for information on “cancer in blood” and was unfamiliar with the term “leukemia,” until a researcher shared it with her. A researcher observed, “It is fascinating how the framing of a search [for] ‘cancer in blood’ versus ‘leukemia’ makes a difference [in the search results].” [Observation 08/10/2013]Many HackHealth participants used 1-word queries to search for information. We observed some of them typing 1-word queries, such as Captain searching for “concussions” and Jerry looking up “coma,” which returned so many results that participants spent a lot of time just sifting through them. As 1-word searches are typed into search box, participants frequently use Google’s “autocomplete” feature that offers suggestions as a searcher is typing his/her query. Our observations revealed that participants typically use the autocomplete feature for 1 of the following reasons: (1) they know the broader topic that they are interested in, but don’t know the specific subtopic, questions, or proper search terms that should be used; (2) they know the search terms that they would like to use, but don’t know the exact spelling for the terms; or (3) they do not know the actual terminology for the illness or health topic that they are interested in and rely on autocomplete for suggestions. For example, Jerry knew he was interested in researching comas, but he relied on autocomplete to select his particular subtopic of interest. We found that our participants frequently clicked on 1 of the search suggestions brought up by the autocomplete function, even if it was not what they had intended to type in the search box in the first place.Our participants had little understanding of the organization of the search results page. They did not always distinguish between ads and other search results. For example, they paid little attention to the presence of links to advertisements that appeared among their search results, and at times, believed that the advertisements, which were listed at the top of the search results page, were actually credible sites to obtain health information. For example, 1 researcher observed, “Ariana then went to Google and typed the query ‘how to cure heart disease.’ She clicked on the first ad, which took her to the Mikey Network... ” [Observation 01/14/2014] Participants did not understand the order of the search results page, believing the list to be alphabetical or based on popularity. Andy Sixx, for example, believed that search results were returned alphabetically. Jerry believed that the top search results (starting with the ads) are the most popular. Some participants relied solely on the snippets, rather than clicking through to the website, as 1 researcher reported, “When [Ariana] got the search results for each of these searches, she just used the snippets to get the information needed and . . . did not actually click any of the links.” [Observation 02/26/2014]We observed an overreliance on word familiarity among many of the participants who come from non-English speaking homes. During 1 of the activities designed to capture how they decide which search results to click on, we discovered that they were relying on recognizing words that were familiar to them. For example, 1 student chose a link entitled “Obesity Information” just because she recognized the term “information,” even though the listing was an advertisement on the search result page. Once arriving on a page, another student deemed it trustworthy because it had the option to translate the page to Spanish. More information on this phenomenon can be found in Subramaniam et al, 2015.The primary obstacles that hinder these adolescents from comprehending the health information they find on the open Web are a lack of mastery of the English language and an inability to understand the health terms/phrases that are embedded within the information they find. In addition to unfamiliarity with scientific or health-related terms, participants typically do not recognize common health terms such as “symptoms” and “diagnosis.” For example, a researcher noted, “Nicole’s vocabulary seems to be a barrier . . . I had to explain what the terms ‘symptoms’ and ‘diagnose’ meant.” [Observation 11/12/2013]While we did have participants who actually read through paragraphs of texts from their selected information sources with tremendous patience and attempted to capture only the relevant information, the majority of participants skimmed through Web pages rather quickly and sometimes missed relevant information and/or ended up with the wrong information. For example, 1 researcher wrote, “[Mr. Science Guy] was skimming too quickly to retrieve good information. In point, he ended up with completely incorrect information, though the site has it spelled out correctly. . . .  read off the article’s main points, though like Mr. Science Guy she ended up with misinformation because she perused much too quickly.” [Observation 05/01/2014]One common reason participants trusted information was because the author had professional expertise, such as in the case of a doctor, but they also extended their perceptions of credibility to news reporters and celebrity doctors. Jaysa explained her belief in reporters: “They are reliable, the news reporters, ’cause, you know, I don’t think they would lie.” Nunu identified Kathleen Doheny as the author of a WebMD article that she had found, and learned that she’s a journalist who specializes in health, fitness, and behavior topics. Nunu explained why she trusts her: “She’s a journalist, but . . . she still knows about health topics and fitness and stuff. Even though you’re not a doctor, you might still know a little about the health-related topic.” Betty Boop said that she trusts the Dr. Oz website because her mother watches his show and has used some of the information he provided and found that it worked.At times, our participants faced challenges in correctly identifying the true source of information on the Internet. Sometimes they could not find an author name. Other times, they incorrectly inferred who the author was. For example, several students believed that WebMD is written by doctors from Maryland. Captain said, “The first website I would go to is WebMD because . . . it’s doctors from Maryland.” Another student, Phenomenal, incorrectly identified the webmaster of a site as the author of the content on the site.Participants also encountered problems as they evaluated the credibility of a website based on its domain. They tended to feel that .org websites were more trustworthy than .com sites. Chocolate Rain, for example, explained, “It’s a .org website, so you know they’re not getting too much money from it, I guess. . . . Most .com websites, even though some of them have good information, some of them . . . get money from it.” However, participants sometimes found it confusing to try to judge a site based on its domain. As Chocolate Rain put it: “I’m still confused because it’s like, how do we trust the sites, because . . . most of us trust .org and then some of us don’t trust .com because most of .com’s are being paid by . . . they’re like money sites. And then we don’t trust .gov because it’s the government, but then there’s Wikipedia.org. I’m just like, . . . it’s a .org site, why don’t you trust it?”Sometimes participants felt that information on the Internet was only credible if it retained features from generally trusted media, such as books. Cherry Marshmallow stated, “I found out from my friends, if it [the website] has, you know, those copyright things in a book, if it has that, it’s credible . . . that’s what they say.” Some participants also felt that online information was credible if they already knew the source from another context. Little Man said he trusted the Let’s Move website because he had seen Mrs. Obama talking about this website in a television ad. Star Wars agreed that this website is credible, explaining “because Mrs. Obama said so.” However, there is also danger of completely trusting everything on the open Web, as Ariana explained, “It has to be true because you can’t put fake stuff on the Internet!”For some participants, the presence of special types of content or functionality—such as pictures, videos, or the ability to listen to the content read aloud, to read the content in Spanish, or to perform a search on the site—signaled credibility. Chocolate Rain, for example, explained that a particular website was credible because she had used it previously and found that “it has extra things, like you can listen to it . . . so if you have trouble reading, it reads to you, and then it has it in Spanish and . . . different things.” However, other types of functionality, such as the ability to log in , signaled a lack of credibility to some participants. Jaysa, for example, felt that WebMD is not credible “because you can see right here, sign up . . . or sign in, and then it’s like a blog, so no.”Some participants described trusting (or distrusting) a site because a relative or teacher trusts (or distrusts) it. Cherry Marshmallow, for example, said she trusts WebMD because her mom trusts it. Mr. Science Guy stated, “I know I went there  ’cause my teacher said it was a reliable website.”A few participants used social measures, such as number of followers or number of viewers, as indicators of credibility. Jerry, for example, explained that he chose the link DonorsChoose.org because he noticed that it had 2,609 followers on Google+. Sometimes, however, they misread these cues. For example, Phenomenal said that a diabetes-related video he watched was credible because the person who posted the video had posted many other videos on this topic. However, the figure he was referring to actually reflected the number of Internet users who had viewed this particular video.Out of the 30 HackHealth participants, only 5 deliberately compared (or mentioned that they will compare) the information found across multiple sources/websites to verify or triangulate information. For example, Chocolate Rain mentioned in her post-program interview that she will “check and see . . . other sites have the same information” before actually deciding to use the information that she found. However, even these 5 participants do not exercise credibility assessment strategies in parallel with the synthesis of information from multiple sources. For example, as 1 researcher reflected on JMoney’s strategy, “ . . . [S]he compared the information she found at several sites and if a lot said the same thing she knew it was right. She didn’t really mention the 5Ws,” which is the credibility assessment checklist that we provided to the participants. [Observation 05/01/2014] Another example is Jerry, who always clicks on the Wikipedia link first, and said to just “search another website to just double-check if it’s right . . . ,” which indicates his eagerness to validate the information in Wikipedia by comparing it with other sites. Some participants (Jerry and Jaysa) say that they will check “another” site and some  mentioned that they will compare the information found with “several” and “other” sites, referring to more than 1 other source.Participants do not generally organize the information they find so as to make it easy to return to for use in their presentations. A researcher observed that Nuya “skimmed [websites] hastily and took notes haphazardly . . . currently, her results and notes are mixed for all types of cancer.” [Observation 01/15/2014] Some participants made no (or very few) notes after identifying information that could be used for their presentations. For example, Nunu had no notes at the point when she wanted to create her presentation and primarily worked from her memory of the information that she read.We did not have many opportunities to observe participants’ information ethics practices in using the information they found, with the exception of their citation/referencing practices and note-taking strategies. Participants generally did 1 of the following: (1) used information without citing because they are ignorant about the need to do so; (2) forgot to cite the resources that they used but know that they should have; and (3) did not know how to cite the sources that they used. Regarding (1), 1 researcher wrote, “Arianna had heard about the word plagiarism but she didn’t know what it meant.” [Observation 02/19/2014] Regarding (2), the HackHealth team noticed many instances where participants failed to cite the sources that they used in their presentations. When this point was brought up with them, participants often readily agreed that they should have done so. Regarding (3), participants were frequently unsure of when to cite and how to go about including references in their slides. For example, when Andy Sixx noticed that some of her peers had references in their presentations, she checked with a researcher to find out how to include the references she had used in preparing her slides.Participants often lacked ethical note-taking strategies. A common observation among researchers is the tendency for participants to copy word-for-word the information they found. For example, as a researcher observed, Betty Boop “took extensive notes, pretty much copying word-for-word what was on the Web. . . .” [Observation 01/29/2014] The same researcher observed another student, “Arianna really wanted to just copy-paste text from the Internet directly into her presentation. She explained that she didn’t like having to switch windows back and forth in order to be able to type things in her own words.” [Observation 02/19/2014]Through our experiences working with adolescents in the HackHealth program, we have identified several challenges that they encounter when moving through the phases involved in identifying an information need, formulating one (or more) specific questions, looking for information, and processing, assessing, managing, and using online health information. In this section, we identify some of the implications of our findings, describing the types of learning activities that we have specifically designed in order to try to address these particular areas of difficulty. Next, we outline the limitations of our work and the novel contributions that we are making to both practice and research related to health literacy instruction for this population. In conclusion, we discuss the importance of increasing young people’s motivation, self-efficacy, and health literacy to enable them to live long and healthy lives, as well as the role of HackHealth in carrying out this important mission, thereby helping to reduce health disparities and improve the long-term health outlooks for participating youth.Findings from our work with HackHealth participants raise a number of important implications for working with youth from socioeconomically disadvantaged backgrounds to assess and improve their health literacy skills. First, we need to ensure that they have the basic necessities, as laid out in the foundational elements sections of Moving beyond the foundational elements, today’s youth need to have a toolkit of search strategies to use if their preferred method proves unsuccessful. They could use help with converting an information need into a question and then converting a question into a search query. They also need to understand how Google (their preferred search engine) works—for example, how the order of search results is determined—and that Google’s autocomplete feature can be, but isn’t always, helpful. Importantly, they need to have lots of opportunities to practice searching, as well as adequate instruction in this area. Ideally, this will help to make them more comfortable with online searching, thereby reducing their anxiety and frustration. Based on these needs, we have revised our original HackHealth modules  to include more streamlined instruction on research question and query formulation in addition to activities that focus specifically on how the Google search engine selects returns based on a user’s search terms/query. For example, one of our activities details the various aspects of a search engine results page and how to make educated choices about which websites to visit to research a topic. This helps reinforce optimal information seeking and use strategies, such as the need to read the content of Web pages carefully and critically.Additionally, youth would benefit from instruction on bookmarking pages (so they don’t have to rely solely on their memories) and on distinguishing ads from true search results on search engine result pages. In acknowledgment of the former, we emphasize the need to record sources used in our pods on note-taking (discussed below). We also include instruction on how to use online bookmarking and organization services, such as Evernote.Along with increasing their familiarity with health terminology, we need to ensure that they are aware of the limitations of relying solely on word familiarity when selecting search results. Youth would benefit from instruction on the difference between the words “useful” and “credible,” with special attention paid to pointing out that the presence of particular types of content  and/or particular types of functionality  is not, in and of itself, an indicator of credibility. Our pods now include examples of incorrect information that gets spread rapidly around the Internet, even being reposted or tweeted from otherwise reputable sources.Regarding information assessment, we can help students by increasing their pre-existing knowledge and by pointing out that relying on one’s pre-existing knowledge when selecting a search result and when assessing the credibility of a site may prove unsuccessful if they have an insufficient or incorrect understanding of the topic they’re searching. Helping youth know where to look when trying to identify the author and the date of a site (or information on a site) is also extremely important, as is emphasizing the need to not only identify the name of the author, but also his or her qualifications. Nuanced instruction regarding the definitions of the different domain types and the general strengths and weaknesses of each of these types of sites is also called for. Helping students to develop better heuristics and engage in more conscious and effortful strategies in assessing the credibility of online information is also important. Included in our pods is an activity where students work in groups to develop their own heuristics. Increasingly important is imparting an understanding of the more social types of credibility measures, such as number of followers, number of viewers, and user ratings. Additionally, students need to understand the importance of consulting multiple sites to gather, cross-verify, and synthesize information, as well as the need to assess the credibility of each individual site even when in the process of conducting cross-verification, as this will help to improve their likelihood of ending up with truly credible information.Moving to the latter phases of information management and use, instruction on note-taking is vitally important. Students need to know how to identify the relevant portions of information on a Web page and how to take good notes on this content, using their own words. Further, they need to understand what plagiarism is and why it is important to avoid. To address this need, we included activities focused on note-taking skills, plagiarism, and on the ethical use of information in our pods.Our work blends research with practice—our research informs our practice, just as our practice informs our research. While this arrangement affords us with some important strengths, such as increased relevance and suitability of our instruction and research methods for our particular population, it also means that our findings may not be generalizable beyond the 30 youth who have participated in HackHealth so far. However, as we work with more and more youth across time, we will be able to ascertain whether there are particular patterns that tend to recur across both individuals and schools, which could suggest broader applicability of some of our methods and findings.Another limitation of our work pertains to our use of the school library setting and of imposed tasks throughout the program. Although the use of a non-home setting for the program and the assignment of set tasks could lead to nonnatural behaviors, we attempted to limit the potential impacts of these decisions in three ways. First, we elected to use each group’s own school library setting, as it was already a part of the participants’ daily lives. We felt that this would increase their comfort level as they participated in the program and help to elicit more natural behaviors than an outside space might have done. Second, although we use set, imposed tasks, we nearly always do so in the context of health topics that the participants selected. In this way, we aimed to ensure each participant’s interest in his/her topic and the personal relevance of that topic for him/her. Third, we decided to use multiple data collection methods, so that we could analyze participants’ behavior from a variety of perspectives.Today’s youth have an unprecedented opportunity to live long and healthy lives; however, they need to have self-efficacy, information access, and a wide array of health literacy skills to do so. Our HackHealth after-school program for middle school students from socioeconomically disadvantaged backgrounds aims to capitalize on this population’s interest in science and health, simultaneously increasing their health-related motivation and self-efficacy, their digital and health literacy skills, and their understanding of the crucial link between their daily health-related behaviors and their ability to maintain their health and prevent disease. With an increased societal focus on health and a shift from viewing patients as passive recipients of medical care to viewing them as active arbiters of their own health, it will only become more imperative that youth possess these many different types of health literacy skills.Although the vast majority of existing literature on health literacy assessment has focused on adults and has generally sought to measure reading comprehension, shifting our focus to this younger, more vulnerable (in terms of both age and socioeconomic class) population and widening our focus to encompass the much broader range of skills that actually constitute health literacy provides us with an opportunity to intervene at an early point in the pernicious cycle between poor health literacy and poor health outcomes. We can thereby contribute toward improving the long-term health outlook for this population and reducing health disparities. Furthermore, our intervention takes place at a critical stage in these individuals’ development, as adolescence is often the time when people begin to develop health-related habits and to enact (or not) particular health behaviors of their own accord. Moreover, this age range is very often the time when parents of children with chronic health conditions pass along self-care responsibilities, resulting in poorer health outcomes for those adolescents who fail to successfully adapt to this transition and undertake the necessary self-care activities on their own. By assessing and improving the health literacy skills of this population, we can increase their motivation and their belief in their ability to exert control over their own health, as well as their ability to find, understand, manage, and make use of credible health-related information.


Black men who have sex with men (BMSM) experience among the highest rates of HIV infection in the United States. We conducted a community-based ethnography in New York City to identify the structural and environmental factors that influence BMSMs vulnerability to HIV and their engagement with HIV prevention services. Methods included participant observation at community-based organizations (CBOs) in New York City, in-depth interviews with 31 BMSM, and 17 key informant interviews. Our conceptual framework shows how creating and sustaining safe spaces could be a critical environmental approach to reduce vulnerability to HIV among BMSM. Participant observation, in-depth and key informant interviews revealed that fear and mistrust characterized men’s relation to social and public institutions, such as churches, schools, and the police. This fear and mistrust created HIV vulnerability among the BMSM in our sample by challenging engagement with services. Our findings suggest that to be successful, HIV prevention efforts must address these structural and environmental vulnerabilities. Among the CBOs that we studied, “safe spaces” emerged as an important tool for addressing these environmental vulnerabilities. CBOs used safe spaces to provide social support, to address stigma, to prepare men for the workforce, and to foster a sense of community among BMSM. In addition, safe spaces were used for HIV and STI testing and treatment campaigns. Our ethnographic findings suggest that safe spaces represent a promising but so far under-utilized part of HIV prevention infrastructure. Safe spaces seem integral to high impact comprehensive HIV prevention efforts, and may be considered more appropriately as part of HIV capacity-building rather than being nested within program-specific funding structures. From 2008–2010, black men who have sex with men (BMSM) represented only 2% of the US population but approximately 75% of new HIV infections ,4. PrincIn the context of recent advances in biomedical HIV prevention strategies, community-based engagement continues to be crucial for addressing environmental vulnerabilities in rolling out emerging prevention technology . HoweverCommunity-based approaches to HIV prevention are an essential part of the National HIV/AIDS Strategy . HoweverIn 2014 the Centers for Disease Control and Prevention (CDC) awarded $115 million over 5 years to 21 organizations, as part of its Capacity Building Assistance (CBA) program ,27. ExplTo explore the potential of community-based engagement for BMSM for HIV prevention, in this article we present the findings from a community-based ethnographic study that worked with BMSM and HIV service providers in New York City. This research sought to identify the structural and environmental factors that influence BMSMs engagement with HIV prevention services, and in particular BMSMs engagement with HIV prevention. “Safe spaces” emerged as central to the work of some community-based organizations (CBOs) that we worked with, and our ethnographic findings suggest that the creation and community monitoring of safe spaces should be integral to comprehensive HIV prevention efforts. First, we describe the structural and environmental factors that generate HIV vulnerability among BMSM. Then, we describe the centrality of safe spaces for addressing key aspects of HIV vulnerability, drawing upon participant observation at CBOs as well as interviews with service providers. Finally, we examine the facilitators and barriers that clients and service providers face in their efforts to maintain safe spaces, and we provide recommendations regarding the role of safe spaces for community-led HIV prevention.Participant observation took place twice per week over the course of 11 months in spaces recommended by our Community Advisory Board or that emerged in interviews. Participant observation consisted of “community observation” and “short term observation” with in-depth interviewees. In community observation, we participated in weekly community events and public forums . In “short term observation,” the lead ethnographer (first author) accompanied 5 in-depth interviewees to places where the in-depth interviewees agreed to invite the ethnographer . Short-term observation was particularly useful for documenting the private domain, as well as triangulating interview data from in-depth interviewees that also invited the lead ethnographer to hang out. Participant observation was recording in jottings, fieldnotes, maps, and analytic memos. The lead ethnographer’s own subjectivities and sensibilities as a gay Latino man may have facilitated ‘hanging out’ with other men who were also racial-ethnic and sexual minorities. The first author conducted face-to-face interviews with BMSM and community stakeholders. In-depth interviews were used to collect narrative in the domains described in Key informant interviews with community stakeholders explored sources of contextual vulnerability, organizational facilitators and barriers to implementing HIV prevention, institutional knowledge, and work specifically focused on BMSM and PrEP. We worked with two Community Advisory Boards (a client CAB and a provider CAB) to identify community stakeholders (key informants) that have been active in addressing HIV risk among BMSM in New York City. All participants were read a verbal informed consent form. Because participants were being asked sensitive questions that could potentially reveal information about sex work and drug use, verbal consent provided a higher level of confidentiality than written consent. Participants were made aware that a Certificate of Confidentiality granted by the National Institute of Mental Health protected data collected. Their understanding was assessed with a series of follow-up questions about the content of the consent form. This assessment of understanding was audio-recorded and data collection began following participants’ recorded declaration of verbal consent. All procedures described here were approved by the Columbia University Medical Center Institutional Review Board.Data collection took place between June 2013 and May 2014 and consisted of: 11 months of participant observation, in-depth interviews with 31 BMSM , and 17 60-minute interviews with community stakeholders. Interviews were digitally-recorded and transcribed verbatim. Interview data and fieldnotes were analyzed and triangulated between and across cases using Atlas.ti 7.0 qualitative software . The socOf the 31 BMSM in our sample, the mean age was 29, with 17 men 15–24 of age and 14 men 25 and older. More than half of the men identified as gay or same-gender loving (N = 18). Other men identified as straight, discreet, bisexual, or preferred no sexual identity (N = 13). Just over half of the men in our sample were either homeless (N = 5) or had unstable housing (N = 11). Nearly half of them were unemployed (N = 15) and 8 were part-time/temporary. Seventeen men were on Medicaid, 9 were uninsured, and 5 had private insurance . ApproxiIn interviews, men were asked about their feelings of safety and danger in their daily lives. Feeling unsafe in certain public spaces was a common theme among the men in our sample, and men frequently referred to instances of violence in public spaces. Some men had experienced violence first-hand, while others referred to friends’ experiences. Nearly all men made reference to incidents of LGBT hate crime reported in national and local media. Men described the fear of being attacked as linked to the ethnic composition of the neighborhood. Several commented that neighborhoods with a higher concentration of immigrants from the Caribbean were more dangerous for non-heterosexuals. These men noted that they felt Brooklyn was the most dangerous because of violent homophobia they witnessed. Many mentioned the need for more community-engagement to address violence against LGBT persons, and that a lower concentration of LGBT CBOs in Brooklyn and the Bronx perpetuated perceived danger. As a 22-year-old man explained, “We need more LGBT groups working in Brooklyn because more black gay men moving there.” Perceiving hate crime to be a major problem, he further recounted:Oh the Bronx is dangerous, Brooklyn is dangerous, oh, you know, gay bashing here and there all over the place, you know… Yeah, like I’ve heard more slurs; gay friends or associates of mine getting jumped or getting into fights, just all out brawls in Brooklyn.An outreach worker at a community-clinic serving mostly young MSM of color claimed that the surrounding neighborhood created hostility for “feminine” clients: “transwomen and feminine men were harassed by neighborhood men who call them faggots… Sometimes if they’re feminine, men will make cat calls late at night to harass them or because they want sex.” A 27-year-old same-gender loving man explained a conversation he had with his mother when he disclosed his sexuality in which she was primarily concerned about femininity as “something extra that puts me in danger for no reason.” He continued:But I told her, I was like, "You know, I act pretty normal." I don't really call it normal, but that's the best word to use for it, like I'm not flamboyant, I'm not out in the open, I don't do anything to advertently put myself into danger because of my lifestyle, and stuff like that. I try to refrain from individuals that will put me into that arena….people who are just too loud…I have no problem with you expressing yourself and stuff like that, but I believe that there's always a time and a place for everything, and some people don't understand that.His narrative highlights how gender conformity is socially policed, as well as how femininity  is read by others as a sign of homosexuality. Feminine gestures, feminine clothing and having feminine friends, were seen as signs of homosexuality that many of the men in our sample tried to avoid, reflecting a self-consciousness about showing their sexuality in an environment of hostility towards homosexuality and femininity. Most BMSM and key informants expressed that public and commercial spaces were more dangerous for feminine men than for masculine men who could “pass” (as straight).All the violent stuff that's going on nowadays is more stressful to me, like people crossing the street and beating up people for no reason because they gay or look gay. And that's been on the news quite often. I even told my boyfriend, because I know how feminine he walks and carry himself, "Be careful out there." And when I'm walking with him, I try to be careful too. I wouldn’t walk with him if he was in an area where it’s dangerous–called the projects. In in-depth interviews, men emphasized that femininity, or feminine gender performance, made men more likely to be targeted by more masculine MSM.It’s threatening to be with a feminine man… because you don't want people looking at you in a certain way. Stereotypes are for feminine men. They tend to be loud, obnoxious, ghetto, flamboyant, and just messy. Several men described witnessing violence against men who were “flamboyant” perpetrated by other MSM, who “use that self-hatred and violence on other [MSM] brothers to protect their image.” In addition, the narratives of several BMSM and evening observations in public parks provided examples of instances in which men expose themselves to violence in public sex settings in parks after they have casual sex. A 31-year-old man, who accompanied the lead ethnographer in participant observation, explained the danger of cruising in the park because some sexually discreet men react violently after sexual encounters.In some parks, you have to time yourself to a certain degree where you wanna get out at a certain time because cops can't see you … And [men] take the risk of possibly being caught because they feel like they need to do whatever before they go wherever they travel, whether it’s home or to the club or from the club…. And sometimes that’s why it’s very important to kind of being able to assess the situation because… they will hurt you or attack you after. The risk of violence resulting from “internalized homophobia” in discreet spaces such as parks contributed to context that facilitated “rushed sex” and drug use. In these spaces, men seemed to place higher priority on avoiding arrests by the police than they did on avoiding the other dangers of those spaces .Men also described dangers in gay clubs where the clientele was predominantly Black. Although these places were supposed to be safe for gay men, a 26-year-old man told the story of being attacked by older, more masculine gay men in a gay club:We all fight about not having equal rights because straight people are out here jumping and hate-criming us, but yet we’re in the clubs doing the same thing over petty stuff… And [the attacker was] masculine, you would never be able to tell he’s gay even though he has a boyfriend. So it was a bunch of grown gay men just attacking me. Several men avoided bars because, as a 22-year-old gay man explained, the night ends in fights with men “throwing bottles” at each other. Thus, men in our sample reported feeling unsafe in a variety of public spaces  and commercial spaces . This was related to first-hand experiences of violence as well as perceptions of the threat of violence. Thus, in commercial spaces, such as bars and clubs, as well as in public cruising areas, men felt unsafe because the perpetrators of violent acts were other MSM. Violence was related not only to sexuality but also to gender performance.Men reported experiencing institutional stigma and discrimination because of their race, sexuality, socioeconomic class, and gender performance. Participant observation, in-depth and key informant interviews revealed that fear and mistrust characterized men’s relation to social and public institutions, such as law enforcement, churches, schools, and the family. Most straight, discreet, and bisexual men kept their sexuality a secret at churches because of the fear of being rejected and shamed. Overall, the environment of hostility and danger that BMSM faced created mistrust, and social isolation. Negative experiences in schools undermined educational success and limited employment opportunities.Many men in our sample perceived to have experienced racial discrimination from law enforcement, leading them to feel “persecuted” instead of protected by the police.“So the police came up and they started just questioning what we were doing, why we were there. And of the people who were there, I felt singled out because I was visibly a person of color and the majority of them were not.” “The cops stopped me and told me that I resemble a homicide suspect. And they searched me and then they asked me why I had so many singles in my pocket. And I told them that I was a waiter because I make tips. And he asked me what was I doing in this area and this and that. And I don't know. So that was another experience that I had… So my mother told me, ‘You should have asked them what was the homicide suspect? Was he black? So because you’re black you look like him?’” Through participant observation, it became clear that there was a “culture of mistrust” in communities, such as Harlem, where some participants expressed feeling that a police presence was there to “protect the White people gentrifying the hood.” In addition, several in-depth interview participants reflected public dialogue we observed about the use of “condoms as evidence” of sex work.“Cops believe if you have condoms on you, you’re a sex worker. And we believe mostly in this community if you have condoms on you a lot, if you have condoms all over your house, that you’re a ho and that’s crazy we believe that in this community.” “I feel that why would you lock someone up for that unless you caught them doing sex work? You know what I mean? Yeah, but they're not, so you just catch them with the condom. That's just really stupid. People need condoms.” The general mistrust of law enforcement and knowledge that carrying condoms could be used against them in court effectively deterred several participants from carrying condoms.Some men reported that they no longer attended church because of outspoken preaching against homosexuality, feeling they were not “part of” the community because they were treated as sinners. Many men who continued to attend church struggled to rectify their homosexuality with their religious beliefs, and felt that homosexuality was at odds with their religion. One 20-year-old discreet man who internalized the identity of “the sinner,” explained:They can put a smile on their face and say, “Hate the sin but love the sinner,” but you really don’t know what they’re thinking…I mean it IS stated in the Bible that God doesn’t agree with homosexuality. The Sodom and Gomorrah reference is used a lot. It’s preached against. A psychologist explained that some of his clients continued to go to church to be “flogged” by discriminatory messages resulting in “theological trauma”, and related that some of his clients actively denied their homosexuality at church to “feel like they belong” and thus to maintain social ties with the church. Continuing to attend church services in light of these overwhelmingly negative experiences points to the importance of the church as a cultural institution in many black communities and its emotional impact on BMSM seen as psychological violence.In addition, several young men reported being bullied at school because of their femininity or because they disclosed their homosexuality, which led to fights, public shaming, and sometimes dropping out. A 17-year-old gay man explained that dropped out in the eighth grade because people made fun of his femininity. He recounted being mocked because of his hand gestures.  “look he’s twitching.” Another 17-year-old, gay man recounted that he “got pulled out of school”. He explained that during a period in which he was intensively bullied about his sexuality, he had performed badly in his end of year exams, which culminated in him dropping out in the 11th grade. A 21-year-old bisexual man recounted dropping out because of “difficulties coming out to people” at the same time that he had “difficulties with family members about [his] sexuality.” For many men in our sample, and not just those that dropped out, dealing with bullying, hostile school environments, and with adolescent pressures relating to their sexuality and sexual identity contributed to poor educational outcomes, which had enduring consequences for their later employment opportunities.Persecution at school was echoed, and for some men exacerbated by, homophobia at home. Men who dropped out of school because of bullying often had unsupportive parents who did not accept their homosexuality, femininity, or their gay friends. Most men reported exposing themselves to danger by running away and staying out all night with other older men to seek comfort because of the lack of social support from their families, especially when they were rejected because of their sexuality. In some instances, this resulted in homelessness. Men who reported being rejected by their families often expressed having problems with self-worth, and a few linked their lack of support at home with “reckless sexual behavior.” A 24-year-old gay man who had a difficult relationship with his mother because of his sexuality rationalized:I think if my father would have been around, maybe my life would have changed. Maybe I wouldn’t be having sex with men. Maybe that wouldn’t have happened…from drug dealing to sex work and everything. Many men described how the lack of support from key social institutions, such as churches and their families, reduced their feelings of self-worth and rendered them more vulnerable to HIV, drug use, and limited educational and employment opportunities. A 46-year-old discreet man sums up the kinds of social strains men experienced from homophobic institutions.Negativity [that] comes with being homosexual from heterosexuals, from religion, from your grandma, from your aunt, from your uncle’s buddy, from your uncle–they could say everything about faggots and lesbians… It’s not supported in the black community; it’s definitely not supported through church.He went through a period in his youth when he was homeless because he wanted to experiment with homosexuality. During this period, he became isolated from his former peer group, and recounted losing several of his closest friends and becoming isolated. These issues of social isolation, lack of family support, and dropping out of school and running away were a recurrent theme, both among the younger men, many of whom were currently experiencing these social processes of exclusion, as well as among the older men, whose narratives about their difficulties during adolescence echoed those of the younger men. Their shared experience strongly indicates that a lack of social support across the multiple institutions of law enforcement, school, family and church exposed men to a range of negative experiences .Across the 17 community stakeholders that we interviewed and the eight organizations at which we conducted participant observation, and in conversation with our provider and client community advisory boards, safe spaces emerged as an important dimension of their HIV prevention work. In the NGOs/CBOs visited, safe spaces were a central element of men’s support groups. Within safe spaces, activities and services ranged from group discussions about social justice and issues around sexuality and sexual health, to resume-writing and tutoring services and leisurely activities. Drawing on content analysis of interviews and field notes, a working definition of “safe space” emerged as outlined below.Safe spaces promote empowerment and community mobilization against stigma, discrimination and violence.Safe spaces enable human development by providing skill-building opportunities to those who experience marginalization from educational and work environments.Safe spaces promote supportive social norms and peer networks through a range of leisurely activities that are culturally relevant.Community stakeholders felt that these safe spaces were essential, not simply as physical spaces with rules that offered an environment free of the stigma and discrimination and as alternative “hang-outs” to the dangerous contexts and situations described above, but also in their role in facilitating social support, leisure-time and recreational activities. Home cooked meals that staff brought to potluck dinners, tutoring sessions, video game nights (“Gay-mers Night”), and dance sessions were some of the forms of leisure we observed at CBOs. Safe spaces created a community of people who could provide mutual social support and organize activities—which several CBO coordinators found essential to recruiting and retaining clients for services and continuous engagement with healthcare.people freedom to be themselves and to really feel like a community, to feel like a family”. One CBO administrator described the safe space that his organization provided thus:Interviews revealed that support groups were structured as surrogate homes or families for men to gain social support that they otherwise lacked. HIV CBO administrators and outreach workers drew on ideas of the “home,” the “living room” and the family to describe how clients were supported in these spaces, and said that one of the reasons their clients are drawn into these spaces was because they allowed “A safe space is where you come. You're not judged. It’s free. No one’s going to hurt you. We have food, clothing, shower, anything. Like it’s a safe haven. Like if you don't have a home, you have a safe space to come. (Outreach worker/HIV tester)Men’s support groups were often called “brotherhoods” because men could “support each other as males” to “fill a void,” usually because they were not accepted as homosexual by their biological families. Through attendance and participation in these support groups, men formed close social ties, which came to be understood as alternative families, as one man explained.I guess from your family standpoint, you have a brother and they're not gonna be perfect, but they're gonna always be around and meet you half the time. Well, you're gonna lift them up and they're gonna lift you up. You know, you're gonna look out for each other. By providing a space for leisure, safe spaces enabled discussions about public health messages related to black male sexuality, perceived HIV risk, and perceptions about being socially targeted as dangerous because of their race, gender and socioeconomic status. Together in these spaces, men reflected on their social standing and how their self-perception affected their negative outlook about acquiring HIV. Through participant observation in these brotherhoods, we witnessed the intergenerational exchange of knowledge where men expressed “not feeling boxed up into categories as black gay men, being able to reject rather than accept multiple stereotypes.” Not being “boxed in” also meant collectively developing and articulating a critique of public health discourse that “equates being a black gay man with being at-risk or promiscuous”, which men discussed as stigmatizing. The safe space provided protection from discrimination and an environment that was mutually supportive for confronting stigma related to sexuality, race, and HIV. Many men agreed that these were spaces where they could offer each other “mutual support to confront common problems.” As a 31-year-old, gay man explained, these problems included HIV, but also:It was a space where black men would meet and socialize with one another. We’d have these conversations, anything from politics or what’s happening specifically in the black gay or black homosexual community and just about being a bunch of brothers. And it age-varied. I think the oldest may have been 70, and the youngest may have been 18 or 19.Thus, both BMSM and key informants referred to the “safe space” as a kind of surrogate family, which provided the infrastructure for emotional support to undercut experiences with danger and homophobia in men’s neighborhoods, families, churches, schools, among other spaces previously described.Based on these findings, We do training, as in we do exercises, team building, skill building. We learn how to work together as a singing group. We learn dancing. We learn things like that. Next, they pick a number of students for the leadership team and the leadership team goes out for a week and they develop the outline for the play.Like the program this young man described, we observed at several other HIV CBOs used “art therapy” to address emotional situations. These leisurely activities seemed to engage young people in meaningful ways, to avoid what key informants identified as “being seen as a number” or “just a person at-risk” for HIV.Key informants believed the utility of “safe spaces” to derive not simply from their role in increasing HIV and STI testing rates, but also, crucially, because these spaces offered “important opportunities to socialize in a welcoming environment” and provided a platform to “talk about issues like racism and sexuality” and to “fight marginalization.” During interviews, service providers expressed a series of frustrations about current HIV funding strategies and priorities. Not only did they express concern about long-term decline in funding and staff for programs that supported safe spaces, but many felt that the preference among funders for specific kinds of programs, in particular individual level HIV testing programs, was misguided. For example, one physician explained, “a lot of service providers don’t like EBIs”  because they were “shortsighted” and “undervalued the staff’s work with outreach and community engagement, but that’s what’s funded.” Several CBO coordinators felt that programs that help clients find work and housing had more of an impact on their lives than testing, but that the emphasis on testing made these programs seem less important and less sustainable. Thus, without a commitment to policymaking and funding focused on capacity building to sustain safe spaces as integral to promoting HIV prevention, those working on the front-lines experience frustration and confusion about what they should prioritize with restricted funding.Problems with funding restriction have led to program cuts that directly affect BMSM. One homeless 18-year-old gay man interviewed had been seriously affected when the drop-in center he attended had significantly reduced its opening hours. He felt that the administrators of the LGBT homeless drop-in center did not “know the common struggle of what the homeless youth does go through,” having been turned away with nowhere else to go.For instance, department lock up and it might be a snowstorm outside. I'm like, "You're really gonna kick us all out? Like the kids who don't have places to go, and there's gonna be a snowstorm outside?" They told me that they don't have a lot of funding to pay staff for them to stay.In participant observation at the drop-in center described above, one of the coordinators proudly showed that the institution was building a computer lab. When the lead ethnographer asked the coordinator how they could afford this but had less funding for staff-hours, he explained that this was a special project funded by a private company. Many of the youth at the drop-in center expressed confusion. They felt there was a contradiction that on the one hand the center had reduced its opening hours because of funding cuts, but on the other hand the center was expanding its computer lab. Overall then, the most salient barrier to maintaining safe spaces was restricted public funding for institutional infrastructure.Safe spaces were viewed by both in-depth interviewees and key informants as essential to addressing social and economic issues that have been associated with HIV vulnerability, including institutional stigma , violencIn this way, safe spaces foster a mutually supportive environment, providing opportunity structures for health promotion –40. The These findings are supported by recent meta-analyses and studies on HIV risk among BMSM ,41, whicCommunity mobilization has been documented as critical to HIV prevention and treatment modalities in the history of the epidemic ,46,47, aIn their study of community-based service providers working with BMSM, Saleh et al. (2011) emphasized the need to create “safe spaces” for BMSM . Not onlOur findings indicate that current funding structures are barriers to maintaining safe space. Thus this study suggests critical recommendations for HIV prevention interventions, especially for CBOs and those designing high impact HIV prevention programs. First, funding for institutional infrastructure for safe spaces should be separate from program-specific funding to improve the sustainability of an important aspect of community-based work. Both BMSM and community-stakeholders expressed that it was critical to have spaces that address violence, stigma, and socioeconomic vulnerabilities to improve HIV testing and engagement with care. Second, our study indicates that more emphasis on health promotion and safe environments for leisure in safe spaces would decrease the stigmatization of at-risk BMSM. Recognizing safe spaces in policy, such as the National Strategy, is critical for framing community-based approaches to HIV prevention among BMSM and other vulnerable groups .S1 File(DOCX)Click here for additional data file.


Dignity is related to a patient’s respect, privacy, information and autonomy. Maintaining dignity is defined as ethical goal of care. Although the importance of dignity has been widely recognized, there is limited research that investigates if dignity is really maintained in clinical practice and few studies have been conducted in acute hospital settings with adults across the age range. The aim of the study was to explore inpatients’ perception of dignity in an hospital setting.This descriptive cross-sectional study was carried out in 10 medical and surgical wards of a General Hospital in Modena . We collected a purposive sample of 100 patients by selecting 10 participants from each ward who met following criteria: hospitalized for more than three days, at least 18 years old, not mentally ill, willing to participate and able to speak Italian. We developed a 15-item anonymous questionnaire divided into three sections: “physical privacy”, “information and autonomy”, “nurse-patients respectful interaction”.The percentages of positive (preserved dignity perception) were more frequent than negative (not preserved dignity perception) and no answers with a statistically significantly difference among the three sections . The frequency of positive or negative answers was statistically significantly related to the preservation of dignity according to the following questions : “privacy to use the bathroom” and “respectful interaction”, as protective factors and “maintaining of body privacy”, “involvement in the care process”, “correct communication” as risk factors.Dignity was quite but not completely maintained according to the standards expected by patients. According to patients’ views, privacy of the body during medical procedures and respectful nurse-patient interactions were preserved more than information and verbal communication. Listening to patients’ views on the specific factors they consider useful to maintaining their dignity can help in this process. Recognizing and focusing on these factors will help professionals to establish practical measures for preserving and promoting patients' dignity and providing more dignified care. Dignity should be extensively and systematically pursued as other important clinical goals.The online version of this article (doi:10.1186/s12913-015-0704-8) contains supplementary material, which is available to authorized users. The wor‘dignus’ ,3, which‘dignus’ . Most au‘dignus’ -7. This ‘dignus’ ,9, as en‘dignus’ , which d‘dignus’ . Dignity‘dignus’  and is d‘dignus’ ,14. Bail‘dignus’ , which s‘dignus’ ,17.The responsibility of nurses consists of treating and caring people in respect of life, health, freedom and dignity of each person” [The need to preserve the dignity of patients is included in most policy statements for health professionals ,13 and t person” .The nurse, in all professional relationships, practices with compassion and respect for the inherent dignity, worth and uniqueness of every individual, unrestricted by considerations of social or economic status, personal attributes, or the nature of health problems” [Nurses support the person … receiving care in maintaining their dignity and integrity..”) [Nurses actively preserve the dignity of people through practiced kindness and by recognizing the vulnerability and powerlessness of people in their care…”) [The American Nurses Association states: “roblems” . The samrity..”)  and the  care…”) .In 2008, the Royal College of Nursing (RCN), a professional body representing UK Nurses, launched a campaign, “Dignity at the heart of everything we do”, and proposed a definition of dignity to underpin the campaign: “Dignity is concerned with how people feel, think and behave in relation to the worth or value of themselves and others. To treat someone with dignity is to treat them as being of worth, in a way that is respectful of them as valued individuals” .The International Council of Nurses proposed a code of ethics for nurses, which includes four elements: 1) “Nurses and people”, which represents the nurses’ respect for their patients’ race, age, religion, sickness or handicap, gender, political, social and economic status; 2) “Nurses and practice”, which suggests that nurses may offer competent care by enhancing their professional care abilities; 3) “Nurses and the profession”, which indicates that nurses should develop professional knowledge based on research; 4) “Nurses and co-workers”, which refers to nurses acting as mediators amongst various health care professional groups and protecting patients and their family members if endangered by co-workers .Dignity matters in healthcare are important for patients, families and professionals . It is nNurses are responsible for fostering human dignity through their interactions with patients and with others on the health-care team . It has Although respecting human dignity is an essential element in health care settings, there are different factors affecting patients’ dignity that should be considered, such as effective communication, maintenance of privacy and physical environment, protecting patients, providing privacy, preserving autonomy and sense of control, forms of address, providing adequate information ,23,26-29Several papers have explored privacy and the link between privacy and dignity ,27,29-31The term of “autonomy” is used with the following meanings in health care: self-determination, self-rule, liberty of rights, freedom of will; and being one’s own person ,32. AutoA further element of respect for autonomy in the healthcare context is seeking the individual’s consent before interventions and treatments. Providing and seeking information and facilitating involvement in informed decision-making are considered elements of the informed consent process. One cannot exercise one’s autonomy without the relevant information and support for input into decision making. Information is central to informed consent . To enabThe aim of this study was to explore inpatients’ perception of dignity in an Italian General Hospital setting through the administration of an anonymous questionnaire based on the main factors of dignity, in accordance with the Italian Nursing Code of Ethics: physical privacy, respect, information and autonomy.This descriptive cross-sectional study was conducted from 1st to 31th July 2012.The research was carried out in the following medical and surgical wards of a General Hospital in Modena : Cardiology, Gastroenterology, Pulmonology, Infectious Diseases, Internal Medicine, Nephrology, Orthopedics-Traumatology, Hand Surgery, Transplant Surgery, Thoracic Surgery. To be included in the study, patients had to meet the following criteria: hospitalized for more than three days, at least 18 years old, not mentally ill, willing to participate in the study and able to speak Italian. From each medical and surgical ward, 10 participants who met these criteria were selected in order to collect a purposive sample of 100 patients. The demographic data of our sample are shown in Table The questionnaire was developed, in accordance with the Italian Nursing Code of Ethics 2009)  and lite  and litThe percentage of positive (dignity preserved) and negative (dignity not preserved) answers was analyzed (chi2 test) and correlated to the questions, in order to identify the risk or protective factors related to dignity (multivariate logistic regression). Data were statistically analyzed through STATA program.This study was performed in accordance with the Declaration of Helsinki and was authorized by both the Medical Director and Nurse Manager of “Policlinico”, the University Hospital of Modena. It was approved by the ethics board of local Nurses Association. Before administering the questionnaire, the researcher explained to each participant the purpose and significance of this study, as well as the participant’s right to withdraw from it at any time without any impact on clinical treatment. Each patient received verbal and written information from the main researcher. The anonymity and confidentiality of participants were assured and their decision to participate voluntarily in this study was respected. All patients signed an “informed consent” form before being included in the study.Most patients in our sample were Italians, with a normal age distribution and an equal number of males and females. The majority of them (38%) was hospitalized for ≤1 week  and no answers (23.2%) were more frequent than negative answers (8.2%);for “information and autonomy”, positive (59%) were more numerous than negative answers (28.25%) and no answers (12.75%);for “respectful nurse-patient interaction”, positive (69%) and negative (26.5%) answers were prevalent in comparison to no answers (4.5%).In particular:protective factors, question no.4 regarding “privacy in bathroom” (“Did you have privacy to use the bathroom?”) and question no.11 regarding “respectful interaction” ;risk factors, questions no.2,8 and 10, concerning, respectively, maintaining body privacy , involvement in the care process  and correct communication between patient-professional  Table .Table 3The multivariate logistic regression analysis highlighted that the frequency of positive (preserved dignity perception) or negative (not preserved dignity perception) answers to 5 questions was statistically significantly related to the preservation of dignity , as:This study, which evaluated patients’ perception of respect for their dignity during hospitalization in medical and surgical wards in a general hospital, highlighted that “dignity” was quite but not completely maintained according to the standards expected by patients and confirmed the results of earlier research .All the participants were keen to discuss issues regarding promotion of dignity and their participation was good, as evidenced by the low percentage of no answers. The difference in no answers can be due to the kind of question, not fitting the clinical situation of patients  or to difficulty in understanding the issue. The section of questions concerning “nurse-patients respectful interaction” obtained the lowest frequency of no answers, perhaps due to the universality of this topic, easily understood by everyone. The percentage of positive answers evidenced that, according to patients’ views, privacy of the body during medical procedures and respectful nurse-patient interactions were preserved more than information and verbal communication. In particular, privacy to use the bathroom was frequently maintained, whereas body privacy in some medical procedures which required the body to be exposed was not completely preserved. Avoidable body exposure can be considered an important aspect of dignity, as most studies reported ,8,9,23.maternage or maternal holding according to psychoanalytic authors) [Most interactions between patient-professional were characterized by respect, kind and warm attitude, according to the highest number of positive answers obtained in our questionnaire on this topic, whereas the information and autonomy questions received the lowest number of positive answers. This data suggests that valid health communication in order to permit the patient to give an informed consent or to make health care decisions is up to now lacking or insufficient, as most studies have highlighted . The fraauthors) . OtherwiWe suggest that the results of our study focused on nurse-patient interactions can be extended to all health professionals in all hospital settings, since dignity in care is a universal need of each patient in all phases of diagnostic, therapeutic and rehabilitative programs. We infer that more careful attention to dignity permits patients (and their family or caregiver) to better tolerate the discomfort of physical diseases and the secondary psychological vulnerability, especially in cases of severe illness with burdensome disability. Therefore, the procedures aimed at preserving dignity can be considered not only ethical measures but also efficacious modalities to ameliorate both the therapeutic compliance of patients and the relationship between patient and health professionals .In this regard, one of the greatest scholars on this topic, Chochinov , coined The areas investigated by our study, especially respect for the patient and clarity in communication, overlap the 4 basic dimensions of dignity named A (attitude), B (behavior), C (compassion) and D , indicated by Chochinov ,42 as thThe preservation of dignity in the areas of physical privacy, communication of information, autonomy and respectful interaction with patient should be the basic foundations of each health treatment and care activity. All professionals of the health staff  have to maintain dignity in care and treatment not only to guarantee an ethical approach but also to obtain the clinical improvement of patients. Nevertheless, nurses are closer than other professionals to the patients because the care they provide addresses the whole person, for many hours a day, in intimate and delicate psychological and physical zones.This research has some methodological limits: the sample was restricted, not randomized and was only representative of the patients admitted in surgical and medical wards of a single hospital in northern Italy. In this regard, we have to point out that, in Modena, patients’ perception about the maintenance of their dignity during hospitalization has not been completely analyzed. This study represents innovative research on this topic. Another important limitation is represented by the questionnaire, which should be further validated by other researchers in other scenarios. This preliminary study is only a validation attempt of a survey instrument to evaluate dignity in an acute hospital setting which, up to now, has not been available since the only questionnaire in Italian is Patient Dignity Inventory , validatFurther steps should be taken to ensure that various guidelines on dignity are fully implemented  and otheWe conclude, in accordance with other authors ,9, that,We underline that “dignity conserving care”, which has an important effect “on how patients experience illness” , is most