Colorectal cancer (CRC) is a common malignancy worldwide. Despite being the most common cancer in Singapore, CRC screening rate remains low due to knowledge deficits, social reasons such as inconvenience and a lack of reminder or recommendation. A decision aid (DA) may facilitate an individual’s decision-making to undertake CRC screening by addressing misconceptions and barriers. We postulate that a more person-centred and culturally adapted DA will better serve the local population. The views of the target users are thus needed to develop such a DA. A CRC screening DA prototype has been adapted from an American DA to cater to the Asian users. This study aimed to explore user perspectives on an adapted CRC screening DA-prototype in terms of the design, content and perceived utility.The study used in-depth interviews (IDIs) and focus group discussions (FGDs) to gather qualitative data from English-literate multi-ethnic Asian adults aged 50 years old and above. They had yet to screen for CRC before they were recruited from a public primary care clinic in Singapore. The interviews were audio-recorded, transcribed and analysed to identify emergent themes via thematic analysis.This study included 27 participants involved in 5 IDI and 5 FGDs. Participants found the DA easily comprehensible and of appropriate length. They appreciated information about the options and proposed having multi-lingual DAs. The design, in terms of the layout, size and font, was well-accepted but there were suggestions to digitalize the DA. Participants felt that the visuals were useful but there were concerns about modesty due to the realism of the illustration. They would use the DA for information-sharing with their family and for discussion with their doctor for decision making. They preferred the doctor’s recommendation for CRC screening and initiating the use of the DA.Participants generally had favourable perceptions of the DA-prototype. A revised DA will be developed based on their feedback. Further input from doctors on the revised DA will be obtained before assessing its effectiveness to increase CRC screening rate in a randomized controlled trial. Colorectal cancer (CRC) is prevalent worldwide, with an age-standardized rate as high as 51.2 per 100,000 in Hungary  for their time and travel expenses. The interviews were audio-recorded, transcribed verbatim by either a study team member or a professional transcriber with reference to field notes. The transcribed texts were audited by YSWJ with reference to the audio recordings and errors were corrected.After reading the transcripts from the initial two IDIs, two investigators YSWJ and TNQ independently coded the data. While the investigators did not formally assess the inter-rater reliability, there was a high level of agreement between the coders when they convened. There were only a few differences, which were deliberated between the coders to reach a consensus. The generation of the initial set of codes helped to guide the coding of subsequently gathered data. As more interviews were completed, new codes that surfaced were discussed among investigators and added to the codebook.Thematic analysis was used. As described by Braun and Clarke , it emphParticipant details and consent forms, recordings, field notes, transcripts and coding were organized in secure archives to ensure a clear audit trail.The study received ethics approval from the SingHealth centralized institutional review board (CIRB reference: 2018/3232). It was sponsored by the SingHealth Seed Fund (SHP-SEED50-2019).27 participants, comprising 10 men and 17 women, aged between 50 and 77 years from all major ethnicities in Singapore, were interviewed .” P4“We must know all the options so that we can choose the suitable one for us… I prefer to know the risks of options but I’m also scared.” P9, homemaker, on being asked if she wanted to know all the options and their risks and benefitsDuring the FGDs, it was evident that while majority had heard of CRC screening, they were unaware of all the options available. After going through the DA, participants recognised and understood the locally available screening options and their associated risks. These were knowledge that was previously unknown to them. They became aware of the accessibility of FOBT, and were surprised that they could collect free faecal immunochemical test (FIT) kits from various community service points such as pharmacies. The diagram from Singapore Cancer Society further aided their understanding on how to properly collect a stool sample without contamination. Though intimidating to a minority, most participants wanted to be told of the risks of the various screening options.“If I want to go for colonoscopy, what is my first step? This part, I’m not sure. That means, I walk in to the hospital and say I want to do it?” P32, tertiary educated, freely mentioned due to an interest in doing the colonoscopyThey sought practical information on how to obtain an appointment for colonoscopy, an invasive procedure performed by specialists in the hospital.“It’s stated there “test done in doctor’s office”. Office? Is it? How about “clinic” kind of thing?” P26, tertiary educatedThe term “doctor’s office”, while common in North America appeared alien to local participants, even those with tertiary education. They preferred nomenclature like “clinic” instead. They were also unfamiliar with medical jargon, such as IBD, which is listed as a risk factor.“This part must be done with someone who can understand. Medical person or something. It can’t be done alone if you don’t understand.” P23, diploma educationParticipants from a few FGDs had difficulty understanding and required guidance to navigate this section. There were suggestions to simplify this section.“It’s only one language, English, what happen to the other languages? And these people sometimes don’t understand English much. If you put in 2 or 3 languages, might be easier for them.” P2, secondary educatedParticipants suggested having the DA in various languages such as Mandarin, Malay and Tamil in order to cater to the multi-ethnic population in Singapore. This sentiment was common throughout the IDIs and FGDs.“For the size, I think it’s easy for them to tuck into a plastic bag…” P2“I think the layout is good… I can read it without my glasses.” P4, retiredParticipants accepted the size, layout, font and font size of the DA. They suggested having pictures on the cover page to make the DA more attractive and increasing the size of some visuals so that the accompanying text was more legible.“I would say it’s useful because nowadays everybody owns a hand-phone, they can just share around. Of course, the booklet, it does serve its own purpose, especially those who do not download the app, they won’t get to see it.” P26, tertiary educatedThere were mixed opinions about digitalizing the DA. Some felt that it would be useful, as most people owned smartphones. Others were concerned that the target age group may not be tech-savvy and preferred the printed version.“Maybe hand drawn, so at least it’s not so graphic and so very real? … we have that element of realness there, but can you make it like a little friendlier? And also, like, modesty wise” P18, Muslim participant“For me, I’m okay, because I have an open mind, but as for some other religions and other communities, I’ll respect their view.” P30, in response to P18’s concerns about modestyThe visuals were useful as they enhanced participants’ understanding of the screening procedures. However, in one of the FGDs, a female participant raised her concerns about modesty with regards to the graphic of the colonoscopy in the draft DA. Although the other participants did not initially share the same concern, they concurred on the sensitivity of the graphic in the multi-religious and cultural context of the local population. They suggested hand drawn or cartoon-like visuals instead.“We can discuss and see which is the best. More comfortable before going for it.” P15 expressing her preference for discussing with the doctor before making a decisionMost participants wanted to be told of all the available options. They expressed their preference to be involved in the discussion with their doctor before making a decision regarding screening. A minority preferred to leave the decision making to the doctor, trusting that the doctor would make the best decision for them. Others felt that it depended on the decision to be made, preferring to make their own decision with regards to screening and having shared decision making with their doctor if they were having symptoms and needed medical advice.“Any queries and concerns, we can go back and ask him (doctor). I don’t think they have time to one-by-one explain, because it’s not fair to the patient (waiting) behind (referring to queue).” P31They understood the time constraints of a doctor’s consultation in a busy public primary care clinic. It would be challenging to go through the amount of information in the DA within one consultation and also to retain all the relayed information. They were willing to read the DA in detail at home and seek clarification with the doctor at the next visit. Most still preferred a face-to-face discussion with the doctor for further explanation.“If the doctor gives, it’s better. It’s more effective than being given by the nurse.” P30“Because we’ve just been checked by the doctor, of course we trust the doctor more. He had just, you know, looked at our medical history, then he gives us this, of course we will trust that.” P18, Diploma education, agreeing with P30They highlighted that the doctor would be the key healthcare professional to recommend CRC screening. They valued the doctor’s opinion and perceived it to be more impactful if the doctor were to give them the CRC screening DA over other healthcare professionals such as nurses or ancillary stuff.“At that point when I was being recruited, I have not decided. Thereon, I read the brochure and I read more. Thereafter, I sort of decided which option I would go for.” P5, tertiary educated homemakerParticipants self-reported increased intent for screening after going through the DA. Some reasons cited include the new found knowledge about how prevalent CRC is in Singapore and the asymptomatic phase of disease. A minority was still not keen as they perceived themselves to be healthy and at low risk in view of their lifestyle habits, the lack of symptoms and lack of family history of cancer.“Share with family, my children, my husband, my close friends.” P9, homemaker, when asked how she would make use of the DA“I think I would not be willing to share with friends… too personal. They might feel offended also. Unless you know them very well, buddies or whatever. I think maybe not… spouse straightaway” P21, tertiary educatedIt was recurrently mentioned during the FGDs that participants’ main sources of information came from their friends and family. Many shared of how personal accounts of friends and family had a direct impact on them. In the same way, participants were willing to share the DA with family members, in particular immediate family members such as their spouse and children. Some had reservations sharing with friends, preferring to only share with close friends out of fear of offending others. Some felt uncomfortable talking to friends about topics related to cancer and feces.The DA-prototype was generally well received by the participants based on their perspectives on the content, language and visuals. The amount of information was regarded as appropriate and relevant in helping them make a decision. They appreciated being told of all the available screening options, especially the risks involved. Despite this, there were multiple suggestions for improvements. The investigators implemented changes to further contextualize the DA-prototype in accordance with the principles outlined in the Hola Doctor Methodology by Schroeder .  code on the DA to facilitate information sharing.Overall, participants self-reported an increase in knowledge and intent for screening after going through the DA. These are important outcomes even for a DA-prototype.The major ethnic and target age groups in Singapore were represented among the diverse group of participants in this study. This ensured that voices across different segments of society were heard, undoubtedly leading to a more refined DA. This study also reaffirms that cultural adaptation is an efficient process of producing contextualized DAs ready for implementation without compromising on content or acceptability.While FGDs offer advantages such as richer and wider range of insights being gathered, it is also prone to conformity and emergence of dominant voices. During FGDs, the moderator laid down ground rules that every participant would be provided with ample time and opportunity to express their opinions in order to mitigate these limitations. Additionally, the moderator maintained a neutral stance throughout the FGD, allowing each participant to share their views on the DA content and design without interference, fear and coercion. Those who were quieter were noted by the moderator and invited to speak up on their perspectives, thus ensuring that every participant contributed to the discussion. The moderator continually challenged participants to reflect on views expressed by others from previous FGDs. Any disagreement would be recorded in the interview and presented for discussion during the data analysis and result interpretation.Another limitation was that member checking was not conducted due to constraint of the grant timeline. The investigators also recognised that the feedback originated from participants with higher educational levels compared to the general population. Further research and modifications of the DA may be necessary to cater to those of lower literacy levels.Of the four phases of cultural adaptation identified by Chenel et al. , this stUnderstanding the users’ perspectives has led to a culturally adapted novel DA with its content and design suited for English-literate Asians. This DA will be introduced in clinical practice to determine its effectiveness in enhancing SDM and increasing CRC screening rate in the local community.Additional file 1: Appendix 1. Topic guide used for in depth interviews and focus group discussions.Additional file 2: Appendix 2. Revised colorectal cancer screening decision aid.


Persons living with HIV (PLWH) are living longer, although racial/ethnic and socioeconomic status (SES) disparities persist. Yet, little is known about the experience of living with and managing HIV over decades. The present study took a qualitative approach and used the lens of symbolic violence, a type of internalized, non-physical violence manifested in the power differential between social groups. We focused on adult African American/Black and Latinx (AABL) PLWH from low-SES backgrounds.N = 59). After providing signed informed consent, participants engaged in in-depth semi-structured interviews on aspects of HIV management. Interviews were audio-recorded and professionally transcribed verbatim, and data were analyzed using directed qualitative content analysis.Data were drawn from two studies with AABL PLWH in New York City . All were from low-SES backgrounds and most were African American/Black and men. Participants experienced a convergence of multiple social exclusions, harms, and stigmas, consistent with symbolic violence, which contributed to disengagement from HIV care and discontinuation of HIV medications. We organized results into five sub-themes: (1) participants were “ground down” over time by material, social, and emotional challenges and this diminished self-worth and, at times, the will to live; (2) social isolation and self-isolation, based in part on feeling devalued and dehumanized, served as stigma-avoidance strategies and mechanisms of social exclusion; (3) stigmatizing aspects of patient-provider interactions, both experienced and anticipated, along with (4) restricted autonomy in HIV care and other settings  reduced engagement; and (5) poor HIV management was internalized as a personal failure. Importantly, resilience was evident throughout the five sub-themes.Symbolic violence is a useful framework for understanding long-term HIV management and survivorship among AABL PLWH from low-SES backgrounds. Indeed, forms of symbolic violence are internalized over time , thereby impeding successful HIV management, in part because avoiding HIV care and discontinuing HIV medications are primary coping strategies. Results have implications for interventions in community and health care settings. Progress in controlling HIV infection is considered one of the great recent public health achievements in the United States . With tiRacial/ethnic disparities in HIV incidence, HIV prevalence, engagement along the HIV care continuum, and health outcomes, are significant and persistent , 6. FirsBuscher and Giordano  outline Societies evidence various forms of violence, including the political, structural, symbolic, and every day . Symbolihow internalized, anticipated, and directly experienced HIV-related and other stigmas maintain tacit social hierarchies and inequalities in ways that are not always readily apparent to those involved. We also draw on the concept of symbolic violence in an attempt to recast the experience of HIV-related stigma as more a matter of reproducing structural inequalities and social exclusions than simply of ignorance or malice on the part of individuals  what’s wrong with him? Why you going to pill line everyday taking all these pills. You know, so you like man I’m feeling good. I ain’t going up there. That [stigma while incarcerated] and like the mental block, you know [was why I stopped ART]. It was a lot of stuff with it. So from that point on I felt like a monster who needs to be in a cage. You know and then every time I take that medicine it was like a constant reminder. All those feelings come back every time I take those pills, so that’s kind of why I’ve had a problem taking them. You know I’ve expressed that to, you know, the people [at a social service setting]. I’ve been seeking mental help.Indeed, it is within this context that many participants experienced the evolution of their own sense of personal value and self-worth (or lack thereof), including with respect to ART adherence, HIV, and with overall health management. As Barry, a 54-year-old Black man diagnosed with HIV at the age of 24 put it,It’s nothing you can really say to their ignorance that’ll change their mind, but I don’t think I know anybody that’s not affected by [HIV]. Either they know somebody that has it - a family member that has it. [...] I don’t see why people are cruel still with it.Notably, the inclination to link HIV-related stigma and associated microaggressions with individually directed ignorance or cruelty, rather than with more systemic forms of social inequality as Barry did, was prevalent throughout interviews. Interestingly, however, Barry, like many participants, still expressed some degree of skepticism regarding whether individual factors were adequate in explaining the persistence and prevalence of HIV-related stigma.Participants’ relationships to ART were also related in large measure to their initial reactions to receiving their HIV diagnoses and the difficulties they faced adapting to the new diagnosis. This was typically complicated by continuous and re-lived emotional trauma and a number of internalized social and structural stigmas. Indeed, we found a cluster of experiences around acceptance of HIV, grief and loss, continuous trauma, and stigma surrounding HIV, which created serious barriers to sustaining consistent adherence to ART. Harold, a 52-year-old Black man diagnosed with HIV while incarcerated 12 years ago, attributed these struggles directly to HIV-related stigmas:Yeah, I struggled [with my diagnosis]. That was the hardest part about it - accepting that I was going to have to die. [...] It was hard for me. I mean, I was thinking of all the possibilities I was losing as in having kids, having a meaningful relationship and so forth. So, I lost my purpose to live. That was my reason for struggling with the whole thing [HIV care and ART adherence]. [...] But [even] now I’m stuck with this stigma of either I’m gay or I’m strung out on crack or something like that, and I get treated as such. And that’s like stuff that I’m still dealing with now with the stigma of [HIV].Harold understood the role of discrimination in the difficulties he experienced accepting and adapting to his HIV diagnosis. This acceptance and adaptation, in turn, were necessary if he were to take HIV medication regularly. Ulysses was a 47-year-old Black man who had been living with HIV for 16 years. Similarly, he discussed his financial and mental health struggles and how these factors influenced his HIV medication adherence:Well, I just gave up. And money was hard, so people pay for [HIV] meds, and I needed money. Sometimes I needed the money not so much for recreational use, for drugs or nothing, sometimes I just needed money for food. Or some things I needed in the house, toiletries. So I just said, hey, [I miss a month of ART], I just sell a bottle, hey. Sometimes it’s because I just give up, I’m depressed. Sometimes I lay there and – the medicine’s right there and I just don’t get up and take it. Because if my depression gets down, I don’t even have to eat. I don’t even have to drink water. I could lay there in bed for three days and don’t even have to pee. [...] I’m so depressed. Didn’t even drink any water. Just laying there.What is notable here is that for Ulysses, his decision to sell his HIV medications was precipitated by the fact that he “gave up,” rather than vice versa. That is, for Ulysses, choosing to sell his HIV medication for basic life necessities and to voluntarily admit himself to a psychiatric ward for much-needed rest was presented as a lack of motivation to care for himself rather than the result of symbolic violence manifest in emotional, social, and structural influences. Indeed, for many participants, the decision to sell or “divert” HIV medications to purchase food, pay bills, or visit loved ones served as important factors impeding ART uptake and adherence.Raul was a 56-year-old Latino man who was diagnosed with HIV at the age of 29 years. Raul lived in a single-room-occupancy residence, which he described “a step above living in a shelter,” but the only realistically affordable option. Similar to many other participants in the study, Raul described a combination of material and emotional pressures related to prison, parole, and his living situation that frequently resulted in what he referred to as a “fuck it attitude”:You know, in my situation, being positive for 37-plus years, homeless, you know, it's like the worst. You know, because as soon as something doesn't fit in, you think the worst. Yeah, giving up, fuck it. F-you's and you, and fuck all this. And you run to the street. And it's not a good thing.Importantly, this “fuck-it attitude” can be interpreted as form of resistance, resilience, and agency; it is a way that Raul has available to him to challenge structural violence, including a set of hegemonic structural inequalities. Like most participants in the present study, Raul described social service and health care settings, as well as single-room-occupancy residences (a setting where many participants resided), as dilapidated, overburdened, and over-institutionalized. Consistent with symbolic violence, these characteristics, in turn, were commonly interpreted as a near-constant reminder that participants were either not wanted or were devalued in the majority of spaces through which they traveled on a daily basis, and/or even that they were seen by larger societal forces as less than human. In fact, many participants were keenly aware of the effects of dehumanizing physical spaces. Nonetheless, Raul insisted upon establishing and maintaining his autonomy with healthcare providers despite these obstacles: “You know, they’re not going to break me. You know, they’re going to have to work with me.”Indeed, some participants even sought to actively preempt stigmatizing interactions. Sandra, a 41-year-old Black woman who had been living with HIV for 14 years, described her strategies to manage being seen as a “pariah” as follows:I always tell [the doctor], can you put on gloves, please? You know, because I’m still feeling that way. She’s like, girl, please.As was the case with many other participants, Sandra’s repeated experiences of being feared and judged resulted in her pre-empting the potential experience of stigmatization . Moreover, she took ownership of it. Yet, as with many other participants, these experiences still led Sandra to avoid healthcare visits on many occasions. Indeed, the majority of participants experienced myriad inter-connected barriers to HIV management, which cumulatively led to a lengthy process that many participants described as a grinding down, as noted above, even to the point of interfering with their will to live. Put plainly, for almost all participants, forms of symbolic violence such as HIV-related and other related forms of stigma were critical aspects of a larger process that eventually led individuals to “give up” on themselves for periods of time. Moreover, these stigmas quite often served to reproduce social differences in ways that did not always involve overt forms of individual discrimination. On the other hand, participants commonly found a way out of this state of giving up on themselves, sometimes in conjunction with health care facilities and providers, and other times seemingly in spite of them.One of the most common strategies for managing the effects of intersecting forms of symbolic violence, specifically stigmatization and marginalization, was to avoid social interactions altogether, thereby effectively excluding themselves from much of society. Notably, this strategy included self-isolation from friends, family, and loved ones, as well as from health care and social service professionals and the larger society. Thus, in addition to feeling stigmatized in daily interactions with unfamiliar individuals, participants commonly reported similar stigmatizing experiences at home. For example, family members were known to use disposable dinnerware, refuse to share food, or spray down bathrooms or kitchens with disinfectant when participants exited. Participants often noted that they saw themselves as an outsider within their families. Further, they reported familial rejection and persistent anxiety regarding when or whether to disclose their HIV status to friends, family, and potential romantic or sexual partners over time as reasons for eventually choosing social isolation over social interaction. Ernie, a 41-year-old African American man who was diagnosed with HIV at the age of 30, described the initial shock of an HIV diagnosis as leaving him feeling “unwanted”:That made them feel small, very small. They were inviting me over to come eat, and I wouldn't even go. Well, why don't you come? Really? Really? You're going to ask me that question? [...] Because I didn't feel like being stereotyped. I didn't feel like you running behind me every time I go to use the bathroom. [Crying] I didn't want to deal with that at all, so I just stayed away from them. I still to this day stay away from them. [...] I don't want to be talking to the ones that do know I have it, and they overhear our conversation, and then I got to deal with that [disclosure] all over again. So I just stay away, and I expand my own family by meeting people and getting close – other people that's [HIV] positive, like me.Despite the deleterious effects of social isolation, participants commonly withdrew from much-needed social support and social interaction to avoid the emotionally punishing experiences of enacted and anticipated stigma. On the other hand, Ernie highlighted the critical role of “found family” or “family of choice,” including others living with HIV, when support from families-of-origin was lacking.As noted above, participants frequently relied on substance use to cope with the myriad problems they faced in their everyday lives. This, in turn, often created its own set of challenges with respect to social engagement. Glen, a 47-year-old Black man who had been living with HIV for 28 years, along with co-occurring, episodic substance use problems, summed up many participants’ responses to these conditions as follows:I always embraced venturing into the unknown, but when I started getting high it was just like I'm scared, you know, I've been doing this so long, I was getting high so long. And I secluded myself so long that it was like I was scared to go out, I was scared to succeed, I was scared to try. It was just like I was a fucking hermit, yes, and it took a minute for me to come out of that, you know.Likewise, Rodney, was a 50-year-old Black man who learned he was HIV-positive at the age of 35 and who described self-isolation as a defense strategy that often led to “shutting down”:I would make them [doctor’s appointments] but then I would break them because there was just so much going on. And then I’d get to drinking because I’m frustrated and [when I am] drinking I would just be like, oh, well, fuck it, go on and reschedule [the doctor’s appointment]. And there were times when I did that and made like four different appointments and wouldn’t keep them, and then after a while I was just like, okay, fuck it. [...] Like when I was just frustrated; when I just had so much of everything, problems, you know life, you know what I’m saying? Things that happen in life, you know what I’m saying? I’m the type of person, I will just pretty much shut down. When things get too hectic for me then I’ll just shut down and pretty much isolate myself. [...] That’s pretty much it, but like I said, the thing was, was when I would get annoyed, frustrated or overwhelmed with some of the stuff then it would be like I just kind of shut down and wouldn’t take [the HIV medication].Yet, Rodney went on to highlight the cyclical nature of substance use problems and re-engagement in HIV care and ART, noting,Then after a while I was like, no, I need to go [to HIV care]; I really need to go, you know what I’m saying, so I’d call and then make an appointment. As of now - like I said I went about a month ago - yes, I’m undetectable and all that and I’m cleared of STDs [sexually transmitted diseases]. [...] I’m more relaxed; a little more relaxed now, undetectable but I want to make sure I stay there, you know what I’m saying?However, as the findings above illustrate, for many, avoidance of social situations was experienced as a form of self-isolation, but the structural factors driving self-isolation were all but unavoidable. For instance, many participants had been placed into supportive housing. These settings were commonly considered substandard and even potentially volatile living situations. This necessitated non-involvement with other residents, who were viewed as sources of stress, caused in large part by participants’ feeling pressured by their other residents to engage in illicit substance use. In many cases, these other residents were seen as potential perpetrators of theft or even physical violence. As Glen, introduced above, noted,I went to [substance use] rehab in the middle of April, so I've been clean for about a month and a half, two months. Yes, so it's kind of a struggle, you know what I mean? Trying to stay clean when you got so much temptation around you. [...] Because when I was home it was just like every time the doorbell rung I would open it [but] I knew it was drugs or [someone wanting] money. You know, so I was always putting myself in harm's way.While social engagement was vital to participants’ well-being, their fears they might accidentally disclose their HIV status to others by taking their ART in view of others exacerbated the need for self-isolation in many cases. As, Glen continued,So I like taking my meds, it's just I forget sometimes. And then sometimes if I do remember [ … ] it was like [if somebody else] is around me and I don't want to take them, because you know, they already think you positive. But then when you pull out medication they know you're positive. But I found a way to get around that at some point [by hiding individual pills in his clothing and later taking them in private].In fact, perhaps one of the clearest manifestations of symbolic violence among participants was not necessarily evident in the ways they experienced their everyday lives but instead, when they contrasted their typical experiences in social service and health care settings with occasional involvements in settings they experience as culturally and structurally salient. In particular, they described these latter types of settings as designed specifically to recognize and address the numerous ways this population of PLWH experiences marginalization and dehumanization. Bernard, a 54-year-old Black man who had been living with HIV for 23 years, described his positive experiences with one particular highly resourced social service and research setting as being notable in that while there he felt he was viewed in a positive light:I've discovered that I'm really not a bad person at all. This is the overall, but I've discovered that I'm not a bad person, and I need to stop punishing myself. [...] [Before coming here] I didn't care. I didn't care.Harold, introduced above, contrasted his positive experiences with this same service setting with those in other, far less-welcoming environments:You know, it's like you don't feel like a pariah [there], you don't feel like nobody's scared of you because you're HIV positive. It's like people talk to you like a real person, and that matters more than anything.Jackson, a 61-year-old African American man who was diagnosed with HIV at the age of 40, similarly described some of the reasons he believed people living in situations similar to his own feel more motivated to engage with others and to begin to care for themselves when being treated with understanding and compassion:People come down here because they're trying to escape where they're at, and they come down here and they feel more relaxed. [Staff] say, “How are you doing? You all right?” They say good morning. Good morning. You know, and usually they're not used to that. [...] We forget that we're human. We are. We are human beings.Indeed, participants frequently noted that their visits to this service and research setting provided far more than an opportunity to speak with staff about their personal and medical issues, and stressed the importance of being treated with dignity and respect.As noted above, participants consistently reported experiencing the effects of social isolation outside of health care settings. Additionally, some participants brought to many clinical interactions not only expectations of substandard medical care, but also a diminished sense of personal autonomy and a learned deference to perceived medical authorities. This, it was suggested, was often rooted in racial, gendered, or other forms of social inequity. Ernie, introduced above, related the following:Finding the right doctor without being judged, without being discriminated against [is challenging]. I was going through several different doctors to get HIV under control, and the first thing they thought – okay, he's positive, he's Black, he had to get it from sex, and I didn't get it through sex. [...] No, I'm not a streetwalker. No, I'm not a call girl or a prostitute – nothing like that. [...] I just stopped taking medications completely.Thus, Ernie experienced a form of verbal symbolic violence enacted through stigmatizing labelling , although it was not clear whether such language was explicit, implied, or feared.Usually when you go to places like this [health care setting], people make you feel like, you know, hands off. They don't make you feel comfortable at all. It's like totally psychological, and sometimes, you know, you ain't in the mood for that shit.Despite commonly having numerous positive experiences with healthcare providers, participants nonetheless described acts of overt discrimination from providers, or they anticipated experiencing negative interactions with providers in the future. Harold, mentioned above, described the direct correlation between stigmatizing healthcare interactions and a reluctance to seek care at all:Before visiting a new health care provider, participants often considered whether this new interaction would recall or even exacerbate existing traumas, including regarding their initial HIV diagnosis and the circumstances within which they believed they were infected with HIV. Sandra, introduced above, described a long series of retraumatizing healthcare experiences:They'd just rather you die. So the care was not accessible or – to me my experience was bigoted. [...] I had a little fight left in me, so I decided to go to [another clinic] [...] They just [communicated to me], you're not important. You just like go through the mills. Like I went in there, I had a high anxiety. [...] Because everybody wanted a piece of me, is how I felt. And [I was] just overwhelmed. I'm literally crying. I broke down in tears. Lady had to give me something to calm me down.For these and most other participants, experiences with healthcare providers were inseparable from other social interactions, and participants carried with them their experiences of dehumanization. As a result, many participants’ statements revealed the ways in which internalized and anticipated stigma sometimes resulted in expecting or even normalizing substandard medical care. Notably, many participants shared accounts of working individually with healthcare providers with whom they had overwhelmingly positive experiences, often described as “life-saving.” Nonetheless, even these participants frequently viewed the healthcare system as a whole as unwelcoming, neglectful, or even harmful, and cited this as a reason to either actively seek welcoming, non-judgmental providers, or to avoid healthcare visits altogether.For nearly all participants, feelings of distrust of and ambivalence and anxiety about health care settings were closely associated with similar emotional and social experiences in non-healthcare settings, which they generally viewed as overlapping. Participants were hyper-aware of being continuously subjected to a constellation of seemingly unrelated surveillance mechanisms, such as prison, parole, probation, court-mandated substance use treatment, supportive housing, child protective services, and, in some cases, directly observed therapy . As a result, participants often expressed feeling their autonomy was restricted or denied with respect to personal decision making, and also noted that the harms caused to them by others were commonly minimized or dismissed entirely. As a result, participants frequently reported responding to these experiences by simultaneously expecting and recognizing a lower standard of care, but also by asserting their autonomy through an avoidance of healthcare visits or ART for periods of time. Sal, a 37-year-old Black man who had been living with HIV for three years, drew a direct line between feeling disempowered and intentionally avoiding healthcare visits:A year ago I didn't care about being treated [for HIV]. I didn't care about taking medications. Really it was kind of because of the whole healthcare system and the frustrations I was going through as far as actually getting medicated and getting care – stuff like that. [...] They would use my medicine as a carrot. They would make me jump through hoops and do all sorts of types of things in order to get medicated, and I didn't feel that I wanted to go through that. I didn't feel that was a correct way of treating somebody with the virus. There was no compassion. We were grouped into almost a meat market of people, and everybody was just there to be treated. We were separated from other people [in an HIV clinic]. It was known that this was the [HIV] clinic, you know what I'm saying? So the whole embarrassment and stigmatism of going there to get medicated... I had decided to myself that I didn't want to go through that. [...] The whole thing was they were trying to get paid for the appointment. You know, they can bill by Medicaid [public insurance for low-income populations] for how many times I come down there for an appointment. So they were trying to get as many appointments out of me as possible, and every little thing was appointment, appointment, appointment – when I know there could've been a better or easier way.On the other hand, even if equitable care was not expected, participants expressed frustration in the face of substandard care conditions. Indeed, many participants understood the primary function of healthcare systems, from primary care providers, HIV and other specialists, pharmacies, and incentive-driven HIV research, not as providing the best quality, convenient, confidential, and patient-centered care possible to each patient, but rather as meeting “the bottom line,” as Sal described above.For others, interactions with various providers made it abundantly clear that participants were considered unable to make healthcare decisions for themselves. Wayne, a 52-year-old Black man who was diagnosed with HIV at the age of 28, described being tested for illicit substances without his consent, and explained how this directly led to his decision to miss appointments with his HIV care provider:I was like, that’s fucked up. Okay. “What if I was dirty? Then what would’ve happened?” I told her. She said, “Then I would’ve handled you in a different way.” I’m like, “Handle me in a different way?” “You ain’t supposed to show no partism to a person who smokes and a person who doesn’t smoke.” You’re supposed to give them all the same treatment regardless of what they do with the medication that you give or the information that they give you. I was like, “I don’t really like the way you handle this.” So I been dealing with that. [...] And then, when I left, when I left, I missed my appointment on purpose. My next appointment, I missed it on purpose.I’ve had other physicians that they’re very judgmental. You know, you’re doing drugs, you’re not going to take these meds, you’re going to sell them, so I’m not going to give you these medications. They figured this [ART] is just going to make you worse.Similarly, Tyler explained how substance use cessation was in many cases a precondition put forth by providers for being prescribed HIV medications in the first place:Yet, in contrast, Tyler’s health care provider in another setting brought a harm reduction approach to their discussions. This fostered his ability to manage HIV even when using illicit drugs, an approach consistent with autonomy support.So over the course of, I guess years, I just became more adherent to taking the meds and I would slowly wean myself off of the other street drugs, you know.[ … ] [My doctor] was very progressive.[ … ] She was an excellent doctor, and very open and very understanding.[ … ] Not stigmatizing.[ … ] So, she was very, proactive--telling me, well, the same routine that you do your street drugs, I would like you to take these HIV meds. So, that kind of clicked in and that made me adherent. And, then, over the course of time, I just decided to reduce the harmful street drugs.Yet, for many participants, it was more common for any sense of personal autonomy to be further undermined by an understanding that they were being deliberately taken advantage of by the healthcare system as a whole. Jackson, introduced above, described the following:But I'll tell you one thing. I'll get tired of taking this medication because right now I'm in crisis. [...] Because it's been a battle, man. You know, let me tell you something. They experiment on a lot of us, you know, and it's sad, man. You know, using medicine, to get approval. You know, and to get in with these pharmacies. You know, come on, man, you're messing with people's lives. [...] I'm just a little fed up, that's all. You know, and you know, I keep it real with you. I [don’t] feel like going into any of these buildings [where health care is provided] because they're trying to kill me.For Jackson, as for many participants, implicit and explicit symbolic violence in the form of stigmatization, both within and outside of clinical interactions, were commonly experienced as not only demeaning and degrading but as life-threateningly hostile. Further, they contributed to distrust of the healthcare system. Nonetheless, it is worth noting that it was within discussions of autonomy (or a perceived lack thereof) that the effects of symbolic violence were readily visible, as participants continually struggled to locate themselves positively within the healthcare system as a whole.Despite experiencing and recognizing all of the emotional, social, and material challenges enumerated above, participants who had achieved HIV viral suppression or who had successfully adhered to ART nonetheless often retroactively interpreted past ART periods of non-adherence as the result of personal shortcomings. That is, for many participants, successfully attending HIV care appointments and adhering to ART in the present often served as a powerful reminder of what many perceived as personal failings in the past. Despite facing myriad obstacles related to meeting their daily needs, participants nonetheless continuously expressed a desire to “do well” with respect to their health. Indeed, for nearly all participants, and consistent with health care providers’ views, biomarkers such as high CD4-cell counts and low HIV viral load levels served as markers of success. However, many participants’ self-narratives suggested that, although they understood the context within which they were expected to adhere to ART as prohibitive or at times even overtly hostile, they nonetheless frequently viewed themselves as partially to blame for their lapses in HIV care engagement and/or ART adherence. For instance, many participants noted that they felt that only once one achieved a certain CD4-cell count or HIV viral load level would they deserve equitable treatment in society. As Sandra, introduced above, noted,I felt like people were judging me or, you know, they don't know my story the way they act towards you, especially if you're coming in with such a high viral load. They look at you like you're careless. You don't know my story, you don't know what I've been going through. You don’t know that I have private insurance and I got kicked off my insurance plan because of my, you know, my illness. You don't know the background of why I'm not able to get my meds.Similarly, Mona, a 33-year-old Latina woman who was diagnosed with HIV at the age of 23, faced deeply interconnected barriers to achieving these favorable HIV outcomes:Of course, yes, I should be taking my meds. You know, I want to take my meds. I know and hear the importance of taking your meds. It’s already proven that without meds I become very ill. [...] Right, but the biggest problem right now is money, right. And sometimes you say you just don’t feel like taking [the meds] … Honestly, I would just want my CD4 to be in the normal range, or at least higher than 28 [a very low CD4 cell count] so I could feel good and feel better. And maybe I think when you feel better physically you think better mentally. So you know, I [would] feel like I’m a regular person. When I’m sick and feeling not so well I’m a little depressed, you know, and I go through my little shit. But when everything seems okay you want to take your meds, you want to do good.For Mona, feeling “a little depressed” and unlike “a regular person” often spiraled quickly into a situation wherein she ended up feeling “dead inside” and missing doses or selling/diverting her medications altogether, which she noted repeatedly was often her only option for survival: “Yes, honestly (when) it’s not difficult … I don’t have to sell them.” As is the case with many participants, Mona saw depression, stigmatization, and financial necessity as deeply interconnected, if not indistinguishable. Again, within these narratives, the unwillingness or inability to regularly take HIV medications was sometimes understood as a personal failure rather than a failure of a larger system to provide appropriate supports, including an understanding of the symbolic violence and structural barriers that characterized so many aspects of their lives. Mona, introduced above, described her situation as follows:Nobody wants to be a bum or a drug addict, and it just doesn't happen, life happens. You know, sometimes when you don't have a friend you don't know how to cope. And you turn to drugs, and you get fucked up physically, you know, you just change who you are. I felt like that was happening to me too. [...] I just want to enjoy life for what it is. I don't want to be rich. I just want normal. I just want furniture in my living room. I want everything a normal mom wants. I don't want nothing more. I don't want nothing less. That's it. I just think I compromise too much.Like Mona, nearly all participants described “normality” as an all but untenable goal in the past, present, and/or future, and viewed themselves as largely responsible for having not achieved that goal, an internalization of symbolic violence.Racial/ethnic disparities in HIV incidence, prevalence, morbidity, and mortality in the United States are well documented . Yet, reSymbolic violence is a useful organizing concept for understanding the experience of long-term HIV survivorship for African American/Black and Latinx PLWH. In particular, symbolic violence is a valuable framework for interpreting participants’ complex relationships with exclusion, self-perception, physical and psychological harms, and HIV-related and other forms of stigma. Moreover, it permits a description of participants’ understandings of the cumulative effects of social and structural contextual factors on the sense of self, social life, health care decisions, and experiences with health care and social service settings and providers. Although symbolic violence does not begin when an individual receives an HIV diagnosis, clearly HIV confers forms of symbolic violence highly specific to living with HIV, along with forms of symbolic violence that affect other marginalized populations. We found symbolic violence is enacted both explicitly and implicitly, including through verbal and nonverbal communication directed toward PLWH, through terms such as “addict,” “prostitute,” “streetwalker,” “gay,” and “strung out on crack.” Even the highly charged term “AIDS,” the use of which has recently been discouraged by public health experts , is ofteWe found that symbolic violence is commonly internalized over time, which creates a counter-productive intra-psychic, emotional, and inter-personal context that, results suggest, contributes to poor engagement along the HIV care continuum, as shown in Fig. PLWH experience symbolic violence in the HIV care system, which is perhaps not surprising given that this system is located within the larger societal context. Indeed, navigating the highly complex landscape of HIV-related healthcare is exceedingly difficult for PLWH, in large measure due to symbolic violence. Many HIV care settings provide comprehensive care and care coordination , and theSubstance use is a common point of friction between participants and healthcare systems providers. PLWH who use substances or have done so in the past commonly experience, or anticipate they will experience, judgment from healthcare providers, which, they fear, may result in denial of care , 61. IndThus, particularly in low-SES environments, it is difficult for PLWH to access social service and medical settings that seek to counteract and/or not perpetuate symbolic violence by supporting participants’ dignity and autonomy, combatting dehumanization, and actively and explicitly acknowledging during the course of care the important social and structural factors that contribute to a lack of engagement along the HIV care continuum. Yet, when PLWH do access such settings, the emotional benefits are apparent and are often followed by improvement in HIV-related health behaviors. It must be noted, however, that most participants report having numerous positive and even life-changing and life-saving experiences with their own personal healthcare providers. Indeed, the substantial rates of engagement along the HIV care continuum locally and nationally highlight that for most PLWH, the HIV care system meets and often even exceeds basic needs. However, for the substantial proportion of PLWH who are poorly engaged along the HIV care continuum, experiences with the healthcare system as a whole, often combined with dehumanizing experiences within social service agencies, supportive housing, and the criminal justice system, commonly coincide with healthcare systems in such a way that these systems are collectively experienced as indifferent or hostile.Study results are consistent with past research on stigma and its contribution to social isolation . ResultsAlthough symbolic violence is largely unnoticed and communicated as a “normal” aspect of society, we found PLWH often recognize symbolic violence and its effects. Moreover, the present study uncovered a wide array of strategies that this subpopulation of PLWH develops to cope with its many manifestations. Pro-social and health-enhancing strategies include anticipating and recognizing the sources and effects of symbolic violence and seeking mental health services or substance use treatment, creating a “found family” of other PLWH, and deciding to re-engage in HIV care. Yet, clearly other approaches PLWH use to manage symbolic violence are less productive in the long term, such as self-isolation, withdrawing from HIV care, and discontinuing HIV medications, as we detail throughout the study. Yet, disengagement from HIV care and/or ART are often best understood as common conscious applications of personal autonomy (e.g. “I had a little fight left in me” and “they’re not going to break me”).As Williams and Jackson  note, efThis study has a number of methodological strengths, including the use of data from two separate studies and a methodological approach designed to improve transparency, rigor, trustworthiness, and validity , 55, 85.Despite major recent advances in HIV treatment and improvements in engagement along the HIV care continuum leading to reduced morbidity and mortality rates for PLWH, African American/Black and Latinx PLWH experience more barriers to engagement, as well as poorer health outcomes, compared to their White peers. Symbolic violence is a useful framework for uncovering and exploring the understanding, meaning, and experiences of African American/Black and Latinx PLWH from low-SES backgrounds who have been diagnosed with HIV 20 years ago, on average; the structural, social, and intrapsychic effects of a long-term HIV survivorship; as well as identifying a number of critical factors that promote or impede successful management of HIV, many of which are addressable. Study findings have potential implications for interventions in community and health care settings.


During the 2020 COVID-19 pandemic, open science has become central to experimental, public health, and clinical responses across the globe. Open science (OS) is described as an open commons, in which a right to science renders all possible scientific data for everyone to access and use. In this common space, capitalist platforms now provide many essential services and are taking the lead in public health activities. These neoliberal businesses, however, have a problematic role in the capture of public goods. This paper argues that the open commons is a community of rights, consisting of people and institutions whose interests mutually support the public good. If OS is a cornerstone of public health, then reaffirming the public good is its overriding purpose, and unethical platforms ought to be excluded from the commons and its benefits. For some, the ongoing Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-Cov-2) pandemic has “reaffirmed the urgent need for a transition to open science.”First, the pandemic has become a false panacea for OS in the unprecedented application of big data and fast science, leading to hurried and expedient publication, rather than prudent protocols, to support public health. Critics, however, point out that much of the information is not vetted, noisy, and can be socially and politically distorting. OS’s chaotic application is contributing to negative social determinants of fairness and equitability, in respect to whom the data is about, who can use it, and ultimately who controls it.the public good has morphed into surveillance that bleeds into social control and profiteering. Of these three OS models—respectively “public good,” “surveillance,” and “marketism”—only the first is part of an ethical open commons: surveillance intrinsically substantiates a conclusion that there are few communal values, and markets accentuate competition rather than cooperation. “Surveillance capitalism,” regardless, has blended into the commons architecture in the form of “capitalist platforms” such as Amazon, Apple, Google, and Facebook, as well as data analysis start-ups such as Palantir and Clearview AI. These businesses enable "value-creating interactions between external producers and consumers, providing an open, participative infrastructure for these interactions and setting governance conditions for them.”Second, OS has become an end-in-itself, so its purpose to support market value of OS has become the “distributed and largely uncontested new expression of power” or the “Big Other,” as Shoshana Zuboff calls it.At a time of loss, hardship, chaos, and uncertainty, where does the OS narrative lead us? In the following, I caution that the COVID-19 pandemic has become an opportunity for surveillance capitalism, and its entrenchment through some initiatives could permanently change the open commons to a “new normal” that jeopardizes our rights. OS imagines an open commons of equally beneficent participants, donors, altruists, and users; but the integrity—a condition which is essential during this pandemic emergency—innovative purposes of an underregulated market. The third phase has strengthened conditions for an ethical commons under a “right to science,” but its belief in untrammeled obligations to science does not exclude divisive industries or purposes that risk undermining public health.After first outlining the concept of OS, I consider three phases that led to the emergence of the current open commons. First, a specific innovation-based critique of autonomy underlies an uncritical celebration of OS potential for vast social and economic value.I argue that if the open commons is a community of rights, consisting of people and institutions who are mutually “for the public good,” then it is a mistake to hold OS to be entirely inclusive.During this pandemic, OS has become central to sharing data about the SARS-CoV-2 and clinical nature of COVID-19. This exponential growth of real-time information has been used directly to justify public health policies. OS is not new to this pandemic, however, and its narrative has a distinct ideology which could have an impact on how we emerge from this time.The contemporary idea of OS comes from a nebulous background: it has origins in history,Primarily, OS maximizes efficiencies in the knowledge economy by reducing proprietary claims on intellectual property and promoting co-created knowledge. Doing so enhances international and interjurisdictional cooperation on fair data creating, access and use. There is evidence that OS benefits researchers through recognition, partnerships, and enhanced data access. It ensures critical review and reproducibility, and opens up scientific culture to social scrutiny and thereby reinforces the scientific method .Bona fides scientists may be held responsible for disingenuous use of their data, and experience the backlash when someone else openly gets it wrong.Although OS culture may be a result of compromises, paradoxes, and surprises, it now seems to be the latest bandwagon; yet the reasons to jump on it may not always be compelling. In the context of this paper, OS raises concerns about the contexts it creates for excessive scope for monitoringFinally, in the open commons, as we shall see, data created under ethical conditions for the public good, such as medical health records, can be acquired under a social pretext, capturing its benefits for traditional and novel market economies.In the earliest of at least three phases, OS emerged as a movement to maximize practical conditions for fruitful collaborations and enhanced sharing. Proponents talked about unprecedented knowledge generation and imagined that incredible transformative discoveries were imminent.laissez-fairism: it lacks government interventionism  so is conducive to the kinds of liberalization that promotes capital generation.“Social openness,” illustrated by uninhibited social media use, has increasingly normalized capitalist platforms.a posteriori private expropriation.”homo datus or data avatars, content (perhaps) to be counted, analyzed, and surveyed.This neoliberal ruse is exemplified in a critique of “Surveillance Capitalism”very large data, both created spontaneously  and by structured initiatives such as health care, biobanks and specific analytic websites, for example, genetic and virological. The data is shared between traditional networks of local, regional, and international research infrastructure and hubs,may be decreased through consumption, and exclusion is possible, necessitating complex  rules for deposit, access and use.Perhaps as a result of the blurring of public health and capitalist agendas, in the second phase of OS, proponents have organized the movement into an “open commons.”This “New Commons” still presupposes a community coopted for the good of science, but its people are compelled to give up some of their interests without expecting immediate gains or fearing instantaneous harms.public bads that prospectively obstruct or reduce social opportunities: captured goods may become disruptive commodities.The commons, however, has become a place to influence social and political discourse. For example, the case may be made that if the open commons is in the “best interests” of people,In this third phase, proponents have attempted to move away from utility-based arguments, to define a more complex ethical environment that frames OS as a “human right to benefit from the fruits of scientific research.”must include the right to consent to scientific experimentation. That right is fundamental to the integrity of science, and the development and diffusion of ethical technologies; that is, it protects persons from science misuse.prima facie positive right to privacy as well as a negative right to be “left alone.”Thus, the right to science bona fides, which excludes activities that prospectively obstruct or reduce social opportunities  and precludes capture of public resources. The ethical commons, therefore, is conditional on the technical examination of “the public interest” in terms of the public good and legitimate rights.principle of institutional responsibility.What I have just described in brief terms is a “community of rights,” in which an egalitarian conception of solidarity promotes OS as mutual and cooperative, rather than secretive, manipulative or competitive.Institutional responsibility also requires that public–private industry occupancy of the commons be ethically symmetrical. The onus also falls on prospective partners to provide reciprocal openness, so that its intentions become transparent in respect to why it collects data and what it is used for.for the public good, so that its stewardship over data is conditional. The data it contains is never truly open, but is accessible to all bona fides researchers, whether public or private, on the conditions that data is returned to the resource and “unreasonable” patents are precluded in any future invention.We can learn a lot from nuanced approaches to OS such as that of UK Biobank: it stipulates that its purpose is bona fides research with capital purposes. This mistake has become an opportunity to undo rights protections, as OS proponents cannot set effective ethical conditions for data access and use: OS avails all possible scientific data for anyone and everyone to access and use for any purpose. Ethical OS requires a far more cautious approach in respect to how society emerges from the pandemic: new data, as well as new technologies  and tools (open source software), even if used ethically now, will become resources able to be used beyond the purposes, and protections offered by, public health.qua innovation, without establishing ethical norms, as well as legal protections, the conditions for the public interest can quickly become ambiguous in respect to the public good. This conclusion may be resisted still, because there is likely little social appetite for returning to times when science was more of a proprietary activity. But it will not do to remain ambiguous or ambivalent to the influence of surveillance capitalism.The current OS narrative potentially underestimates the opportunities for surveillance capitalism during a pandemic. Enthusiasm for innovation, the open commons, and the “right to science” continue to conflate ethical conditions for The open commons is not only data. It is a patient’s expectant diagnosis, a community that provides care and future welfare, and it is where worthwhile research is done to promote public health. It is also the social space where much of our lives has shifted to during the COVID-19 pandemic. These activities are underpinned by the public good, which establishes fundamental obligations on individuals and institutions that, at times like these, are necessary for an effective pandemic response.The worthy ambitions of ethical OS need safeguarding by expanding the narrative to the existential challenges of our time; it has become evident that the emergent OS ecosystem is not sufficiently equitable, and encourages activities that actively reduce socially valuable outcomes. Past examples of the untrammeled use of data  raise concerns about the extent of data held about persons, and how that data can be manipulated and in what ways and for what purpose. The current OS narrative does not go to the root of these concerns about the breadth of information needed and available to make sophisticated predictions about people, and ultimately, the consequential decisions made that limit their freedom during a public health crisis and beyond. A new sense of solidarity in the open commons is one of the few reassuring things to have happened during this pandemic, and through experiencing degrees of alienation, illness, poverty and sadness during the pandemic, communities should not be exploited by entities compelled by old-fashioned, anti-community ideas of neoliberalism.


After publication in volume 80, issue 11, pages 1133–1138 Deciphera Pharmaceuticals, LLC, requested that the article be Open Choice to make the article an open access publication. Post-publication open access was funded by Deciphera Pharmaceuticals, LLC. This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit The original article has been corrected.


Shared decision-making (SDM) can advance patient satisfaction, understanding, goal fulfilment, and patient-reported outcomes. We lack clarity on whether this physician-focused literature applies to community rehabilitation, and on the integration of SDM policies in healthcare settings. We aimed to understand patient and provider perceptions of shared decision-making (SDM) in community rehabilitation, particularly the barriers and facilitators to SDM.n = 23 patients; n = 26 providers).We used a focused ethnography involving 14 community rehabilitation sites across Alberta, including rural, regional-urban and metropolitan-urban sites. We conducted semi-structured interviews that asked participants about their positive and negative communication experiences  for appointments. SDM barriers included lack of privacy; waitlists and financial barriers to access; provider approach; how choices are framed; and, patient’s perceived assertiveness, lack of capacity, and level of deference.We have found both excellent experiences and areas for improvement for applying SDM in community rehabilitation. We proffer recommendations to advance high-quality SDM in community rehabilitation based on promoting facilitators and overcoming barriers. This research will support the spread, scale and evaluation of a new Model of Care in rehabilitation by the provincial health system, which aimed to promote patient-centred care. Globally, nationally and provincially, health-systems and research-funders aim to promote patient-centred care –3. Patien = 38 The tension between presupposition and exploration turned on how open, collaborative and confident the patient and provider were with each other.To Explore“When I first started out, there would be a lot of me sort of being in my own head a lot and making sure I’m prepared, making sure I’m saying the right things, making sure you’ve done your research ahead of time. … But what I [sic] think has changed, and gradual more than anything, but it’s that just kind of being more in the moment and trying not to come up with what I’m going to do or say ahead of time and having [a] more organic sort of growth together.” Tell/Do“”[T]hey didn’t understand my reality. So I have nurses that come and dress me everyday. … If you take that shoe off of me, that’s fine. But then I need someone to put it back on me. So I mean it’s not their fault they would not have an idea of what my actual life is like.” Ask/Listen“I need to understand what their concerns are and the goals and how we both will get there. And from my part, I need to listen and break it down and from their part is they need to follow-up with the exercises and or treatment implementation that I set so then we can talk about it together if that works for them. And sometimes it doesn’t.” The tension around language turned upon whether the language used was uni-directional (where information flows in one direction) or bi-directional .Explanation“If you’re going in for surgery, you don’t understand the surgical risks and what’s going to happen. You could be told but you still don’t really understand. So you want the surgeon who is the expert to tell you this is what you need, this is what we’re going to do. And that’s how I approach it here, I give them options but I tell them this is the best.” .“Sometimes I thought that they were understanding what I was saying whereas sometimes they’re not. They didn’t understand everything fully and you don’t know that sometimes until they come back. And you have to re-explain the diagnosis. Or if it’s an exercise you want them to do, you have to show them again they didn’t quite understand it the first time so it would maybe communication where I hadn’t been as clear as I thought.” The manner and purpose of information sharing could empower the patient or provider alone (explanation), or both patient and provider (education). Explanatory information-sharing featured permission-securing purposes; incomplete understanding; and, lacked clarification of understanding. Educational information-sharing enabled patients and providers to clarify each other’s perspectives, expectations and preferences.Education“Information. So in my opinion, people tend to not do enough or they overdo it. And so they give you guidelines to follow and that really helped stay within the parameters of being healthy.” There’s been a couple time where not too much was happening for a while. So, I said to the doctor, “I feel like things aren’t really moving ahead like I thought they were”. Then he’s explain to me why right now were trying to open things up, because right now you’re all hunched over so we need to open that up. And then when we progress to the next level, the strengthening will start improving things. And I guess I was okay with it. I didn’t need to see improvement every single time.” “Patients and providers revealed factors that manifest as barriers or facilitators to the SDM experience in community rehabilitation Fig. . These fPatients and providers had six factors in common: geography, messaging, organization, patient characteristics, provider characteristics, and time. Providers recognized two further factors: appointment types and training. Patients recognized two unique factors: choices as well as power and deference.Because of where we are and the people we serve, both because of distance or because of people are back in the workforce and can’t come once a week for six weeks, so then we adapt that program a lot. We have that discussion about ‘does this work for you?’ ““That’s one real advantage of [Town 3] is that he is it. And there’s next to nothing else going on. There’s no other distractions. He’s focusing entirely on you. … He takes his time.” While details are in Tables “Pain relief motivates me and being able to do the things [that] I like to do without having any issues and driven by results. So when I see results from their actions as well as my actions, then of course that builds trust and motivation to continue working with the practitioner.” Another example includes time. Time facilitated SDM when providers gathered experience and confidence in their professional skills and spent more time with patients to build trust. Time impeded SDM when patients were unsatisfied with the ratio of physical progress to time receiving rehabilitation services or when patients or providers perceived less time available during appointments.“Depending on what part they’re not understanding, I’ll use different things. I use visual tools. I use models. I use pictures. I use analogies. I use descriptions. I’ve got an arsenal of them from over the years from how I describe things. If they’re a mechanic, I’ll compare it to a car. … If they’re a baker, I’ll compare it to not having the right ingredients.” A third example includes messaging. Patients and providers appreciated clarity, specificity and remembrance in their communication. They felt that fostered better quality SDM. Use of visuals, clear language, and simple strategies that were tied to the patient’s previously-described circumstances, needs and wishes were of great value.The perceptions of SDM of patients and providers in this study reveal that explanations of SDM could be described as falling along a continuum, where high-quality SDM in community rehabilitation involves active, two-way, mutually-respectful communication. Patients and providers perceived many similar barriers and facilitators to SDM in community rehabilitation. Our findings correspond to, and expand beyond, the scant literature from the rehabilitation context , 40, 41.n = 44 studies from mostly physician-patient encounters) demonstrated patient-reported SDM barriers fell into two groups: health-system organization and decision-making interaction [There is overlap between the perceptions of community-rehabilitation patient of SDM barriers and those of patients from physician-focused encounters. A systematic review . Appointment types included power dynamics either because organizational infrastructure dictated the time available to an appointment or physicians had more control over the content, planning and communication of certain rehabilitation (e.g. post-hand surgery). Training involves education and information, which is often touted as a great equalizer in power imbalances. Providers appeared to recognize that as well.Six actionable items emerged to promote more experiences of Aligning-Expectation in community rehabilitation. First, provider training, especially particular training on patient-centred care and behavior change , are asSecond, further educational strategies should be developed and tailored to address provider-perceived factors related to patient and provider characteristics. For example, training can give providers strategies and tools to overcome barriers associated with patient attributes . Training can compensate for provider traits manifest as barriers . Patients may not be as fully forthcoming due to their deference to providers and the health system and that patients may have plans of their own. Training that helps providers make space for patients to share could promote patient candour around preferences and plans. Training alone is insufficient; sustainability post-training is critical. Training should support the establishment of communities of practice, where providers continue to share their SDM stories, successes and challenges to enhance teamwork around a common theme across the system and to promote and sustain SDM training and skills in a variety of settings and with variations in patient characteristics.Third, patients and providers were clear on the nature of messaging required in information sharing attuned to Aligning Expectations: clear, simple, patient-specific language with temporal consistency and connections to previous conversations between patients, providers and the health system. Humble, open communication works well. Open communication is not open-ended; patients seem to want specificity and continuity in conversations. A broad open-ended question sometimes works against the provider, as it suggests a lack of remembrance.Fourth, our research clearly demonstrates that both patients and providers have expectations for the rehabilitation journey. Honesty and candour about expectations help patients and providers have collaborative experiences that support patients in setting and meeting their personal rehabilitation goals. Laying out expectations as the relationship unfolds breeds transparency and eventually alignment, satisfaction and patient-centredness.Fifth, lack of time manifests as a barrier, while perceived adequacy of time was a facilitator. These findings corroborate but expand previous findings related to SDM barriers in physician contexts , 20, 21.Sixth, broader policy changes may be needed for other identified, influential factors. For example, using technology to promote choices for patients and providers in geographically-remote areas may overcome geographical barriers. But, this study indicates that when care is collaborative, patients do not seek out alternative choices and relish the unique features of the sole choice in their community. Also, there is a need to explore how humility, collaboration, education and the language of ask and listen can follow patients and providers through different appointment types beyond traditional 1:1 appointments. There is a trend towards more efficient use of group-based programming in community rehabilitation. Further strategies and subsidies may be needed to redress waitlists and financial barriers that limit patients’ abilities to attend rehabilitation on a timely basis.We recognize limits of this study. First, there may be a selection bias and non-response bias. Perhaps only patients with an extreme experience (either good or bad) were interested in sharing their experience with the study, so they would differ markedly from the general patient-population experience. It was unlikely, given the difficulty in patient recruitment generally, to recruit non-responders to participate in a non-responder interview or survey. This study prioritized significant recruitment using convenience sampling to lessen the influence of these biases.Second, there may have been a Hawthorne effect on providers wherein their knowledge of a study assessing their communication altered their communicative behaviours. Due to the importance of informed consent, this effect could not be avoided. All site providers were informed about the study and its focus on communication prior to recruitment. In Phase 1, it appeared that rehabilitation professionals were accustomed to being observed during practice given their own training, the multidisciplinary players, and trainee presence at many sites. One patient-participant in this study noted a marked difference in her provider’s communication style that felt connected to study participation. This seemed isolated and was not replicated by other patient-participants.Third, while our sample was geographically diverse, involved different rehabilitation professional disciplines, and patients with diverse conditions requiring rehabilitation, we lacked representation from diverse ethnicities and cultures. This limitation was compounded due to lack of interpretation services. Future research in settings that care for diverse patients from different cultures and ethnicities would be valuable. Finally, we did not have access to full peer review of all interview transcripts. Patient co-investigators  independently transcribed a sub-set of transcripts, which led to a discussion on themes and relationships with the lead researcher (KPM) who coded all transcripts. Availability and costs prohibited more in-depth and independent second assessments on coding. Many other tactics were used to promote rigour including audit trail, thick description, and negative case analysis.We have found both positive and less-than-ideal experiences of SDM in community rehabilitation. Many distinct, but not mutually-exclusive, factors influence where a SDM experience falls along between two extremes. We proffer recommendations to advance high-quality SDM in community rehabilitation based on promoting facilitators and overcoming barriers.Additional file 1.Additional file 2.