Most women face multiple and co-occurring risks from unwanted pregnancy, human immunodeficiency virus (HIV) and other sexually transmitted infections (STIs) at some point during their lifetime. While a range of contraceptive methods exist and options for HIV prevention are increasing, to date, only male and female condoms provide multipurpose protection from both pregnancy and disease.From September 2017 to December 2018, 60 women from the United States and the Dominican Republic, randomized 1:1 to continuous or interrupted use and 4:1 to active vs. placebo ring, participated in a Phase I trial to assess the safety and tolerability of a three-month multipurpose intravaginal ring (IVR) containing the antiviral tenofovir and the contraceptive levonorgestrel. This study examines survey responses from all participants and qualitative data from a subset of 17 women to assess acceptability of and preferences for IVR characteristics.via survey and qualitative interviews for ring modifications that would further increase acceptability. Insights into women's use experiences also suggest the need for clear counseling messages and introduction strategies that can facilitate women's choice and use of prevention methods.Overall, women liked the concept of a multipurpose IVR and found it easy to insert and remove. Initial concerns about the size or thickness of the ring generally disappeared with use experience. Women weighed trade-offs between the ease of continuous use for a longer duration against concerns about hygiene and discoloration of the ring when left in place during menses. Whether randomized to continuous or interrupted use, most women found ring attributes  very acceptable. They provided recommendations Study findings suggest that a multipurpose IVR would make a valuable contribution to women's sexual and reproductive health options, and that both continuous and interrupted use strategies may be preferred. Across their lifespan, most women face multiple and co-occurring risks from unwanted pregnancy, HIV and other STIs . BetweenAlthough a range of contraceptive products exist and options for HIV prevention are increasing, women often face barriers to uptake and use of single indication prevention products, let alone use of several products to meet multiple needs. Whether for contraception or HIV prevention, barriers include women's perceptions of side effects, ease or burden of product use requirements, partner disapproval or ability to use discreetly, cost and access issues, and broader sociocultural norms , 6. The Intravaginal rings (IVR) are a promising platform to deliver multiple agents. To date, they have been used to deliver steroids for contraception or postmenopausal therapy, and anti-retroviral agents for HIV prevention . In addiThe study, like past studies of vaginal rings also provided some insights into how vaginal ring attributes affect acceptability, including perceptions related to ring size and color , 15, thevia mobile phone in English in the U.S. Interviewers in both sites were trained in qualitative data collection.A Phase I randomized, placebo-controlled trial was conducted between September 2017 and December 2018 to evaluate the safety and tolerability of a MPT IVR containing the antiviral tenofovir (TFV) and the contraceptive levonorgestrel (LNG) . A totalIn this paper, we examine survey responses at the three-month follow-up visit (M3) on acceptability of vaginal ring characteristics  with response options based on a six-point scale from very unacceptable to very acceptable. We also examine whether specific changes in ring characteristics would make the ring more, or less, acceptable. These data are disaggregated by regimen and site. The data collection instruments and approach to analysis for the acceptability objective of the trial have been described previously . BrieflyThis study was approved by the Chesapeake IRB  at Eastern Virginia Medical School and the Institutional Review Board of Profamilia (IORG0001979) and National Bioethics Council (Conabios IORG003206). All participants provided written informed consent to participate in the clinical trial. Participants of qualitative interviews were purposively selected by an unblinded study statistician to represent the continuous and interrupted regimens. They provided a separate written informed consent that included permission to be audio-recorded.Reported previously , a totalOverall, women in this trial liked the idea of a multipurpose product and found the MPT vaginal ring acceptable. In the M3 survey, most participants reported IVR attributes to be very acceptable with flexibility (87.5%), mode of insertion and removal (82.5%), smoothness (77.5%) and color (70%) ranking highest. Participants expressed somewhat lower levels of acceptability towards changes in color over time, although less than 10% found these changes to be even “a little” unacceptable, and none found them to be “somewhat” or “very” unacceptable. There were no significant differences between acceptability of ring characteristics by regimen, agent (active vs. placebo) or site .Qualitative interviews provide more insight into IVR attributes including women's perspectives on the ease or difficulty of insertion and removal, the acceptability of the ring's size, thickness, smoothness, and flexibility, as well as color and experiences during use, such as side effects and comfort during sex.“They’re easy to use, just fold and insert so you don’t need to be a rocket scientist to figure it out.”  In a similar way, a 34-year-old participant from the DR explained, “Because you only have to grab the ring and take it out. You enter your finger, and you find it. And when you touch it, you try to pull it, slowly. Yes, it was easy.”  Six women, some from each site, had used an IVR previously, either NuvaRing as a contraceptive, or in a different clinical trial. Some of these women equated their experience with the study product to those previous experiences.During the initial ring insertion visit, women were offered the opportunity to practice insertion and removal. Most participants found insertion and removal easy. For example, a 36-year-old US participant equated the insertion process to “inserting a regular tampon.” She went on to explain, A few women (n = 3) expressed initial concern about inserting the IVR properly. In such cases, the staff were able to provide guidance. One U.S. participant doubted her ability to correctly insert the ring, explaining that she was “not completely comfortable with that, only because when I did put it in myself, it wasn’t far back enough. So, I would prefer to be with them (clinic staff) when I put it back in.”  However, with practice, even women who expressed initial reservations about insertion or removal described the process as easy or smooth sailing.Wow that experience was, wow! I inserted it very well, because I had already inserted rings before […] But to take it out, wow … . We took over 20 min for me to be able to take it out. …  She (clinician) then had me lie down, and she said “Look, I am going to try to help a little to show you how you are going to do it. But imagine that it's not me, but you, that is going to do it.” And then she did it, and she asked me to insert it again, and … everything was perfect. So now I know how to remove it. Now I have inserted it twice and removed it twice. n = 11)—all but two of them from the DR, were initially concerned about the size or thickness of the ring. At first sight, women worried about whether it would fit inside their bodies, whether the ring might move around during daily activities, or whether their partner might feel the ring during sex. Those concerns usually disappeared after insertion or initial use. When asked what her first thoughts were, a DR participant exclaimed,Relatedly, more than half of sub-study participants fine. As one DR participant described, it's plastic or rubber …  is not uncomfortable. Another said, the color, the flexibility that you can bend it easily… it is all good.Only two women, both from the DR, initially described the ring as “rough”.Most women found the smoothness and flexibility of the ring to be When I Saw it? I thought, “Oh my God, that is thick and rough!” [Laughter.] I thought it was going to be smaller! I thought it'd be something. Oh my God. I found it to be rough. Oh my God. But what can you do? Onward. But it was, it was easy. n = 4) reporting experiencing any side effects from ring use and none worried about symptoms they experienced. Three women described some changes to their menstrual cycles, accompanied by headache or nausea, that were noticeable. The fourth described stronger mood swings after using the ring. However, none reported these changes as problems, and most wondered whether they changes were due the ring itself, or to the biopsies or their normal menstrual cycle.Few women (There's something I mentioned to my coordinator. I think it might've been a headache or—I can't remember what the symptom was but I think she had said it was more likely related to my biopsy. (INT 2) For the most part, positive. Towards the end I did notice just one side effect. I noticed that I would get pretty bitchy just before my period. That was something that I haven't really experienced in the years of having my period. n = 11) reported not being able to feel the ring during their day-to-day activities, including during sex. Indeed, when asked about their sexual experience during ring use, most women described disliking the requirement to use condoms during the trial. While a few women (n = 4) reported that their partners were able to feel the IVR during sex, only two women reported this to be a problem. A 31-year-old participant from the US site explained,Regardless of any initial concerns about the size, thickness or flexibility of the ring, most qualitative sub-study participants In contrast, another participant whose partner could feel the ring remarked,We have great sex, it's awesome. What you're probably asking is if he felt the ring and he did. Sometimes when we have sex, he can like feel the ring, but it doesn't bother him. He can kind of just like feel that it's there. transparency” of the ring and several noted that the ring “appears to have a white medication” inside. A Dominican woman in the interrupted use arm further described how “When it was removed the second time in the second month it was changing. The liquid was going away. The third time it was completely gone.”  For some, the ability to see the medication inside was a benefit, “it allows you to see if anything is going wrong. If it changes colors, then you know (that the medicine is leaving the ring).” (39-year-old mother of 3 in the DR #124).When asked about any changes in the ring color over time, women remarked on two different aspects. Women generally liked the “In addition, several participants also described a change in the exterior appearance of the ring over time. Women generally stated that such changes were due to menstruation and were therefore acceptable. Only two women, both from the DR, found changes to ring color after menses less than appealing.A little ring, a white little ring. Then, when the menstruation comes the color changes. As the bleeding came, it changed color, it was like brown now. Completely brown …  AND WHAT DO YOU THINK ABOUT THE COLOR CHANGE? It was because of the medication or the menstruation. Do you understand me? It gets dirty, that's what I think. Yes, for my whole life! Put it in and that's it. That it just stays right there. I didn’t have any issue with the time.” Several women compared using a longer-acting IVR to using an IUD. However, when considering continuous use for three or more months, women raised several caveats related to menstrual hygiene management. First was the idea that they should be able to remove the ring periodically to clean it. A US participant explained,Women generally preferred a ring that could be used continuously for three months or, as on DR participant said, “So now cleanliness is something I’ve thought about. You know, if this is something that goes out on the market and it is a three-month ring, if women take it out quickly to rinse it off, is that okay? That's something I'm sure other women are going to wonder about. A second concern for several participants in the US, but none in the DR, related to the compatibility of continuous IVR use with use of menstrual hygiene products, including tampons and the menstrual cup.I guess one sort of concern I have is, for the purpose of the study, I was told I cannot use my menstrual cup, but I can use tampons. I feel that had a bit to do with why I chose to do the study because I don't necessarily know if I would have if I had to only use pads. I'm curious if it's a thing for the purposes of the study or if using a cup with this product would be a complication. That would affect my interest in it if it were a product on the shelf. At M3, participants rated whether potential changes to the MPT IVR would make the ring less or more acceptable . At leasNo, the size is good. The color, the flexibility that you can bend it easily… it is all good. For me, everything. I wouldn’t change anything.”  A few others suggested changes not for themselves, but because others might prefer such modifications. For example, when recommended that the ring be thinner, she added, “But, even though I didn’t find it to be difficult, maybe someone would find it uncomfortable. And that would make it easier.” .Data from the qualitative sub-study followed a similar pattern. About half of IDI participants found the ring acceptable just as it was. “Participants in early-stage prevention clinical trials may differ from the end-users who eventually use the products being evaluated. Nevertheless, the value of engaging potential end-users earlier in the product development pipeline has been increasingly acknowledged , 20, 21.A first insight is that concerns about size, thickness, and flexibility of the IVR tended to be transient and were linked to women's perceptions about their ability to insert or remove the ring. These concerns were mostly dispelled once a woman experienced actual use. Qualitative sub-study participants from the DR were more likely to express initial concerns about ring size than US participants. It is possible that, for some women, a lack of previous experience seeing and using an IVR, or other vaginal hygiene products gave rise to initial concerns. Overall, trial participants from both sites found the ring easy to insert and remove—particularly with some practice. These findings are line with those of a systematic review of vaginal ring acceptability for contraceptive or HIV indications from low- and middle-income countries. Across 68 studies, including both clinical trial and observational designs of different types of vaginal rings, most women rated their IVR experience as highly acceptable, and insertion and removal as easy , 22. IndRelatedly, most women reported that neither they nor their partners were able to feel the ring once in place. In two cases, however, the placement of the ring was uncomfortable. Several Phase I trials of other rings also reported some instances when women could feel the ring or might experience some cramping , 27. In A second insight relates to the relative lack of impact of IVR use on the sexual experience compared to that of condom use. As noted in the previously published acceptability paper, most trial participants preferred a 3-month injectable  to other prevention methods. More than half of participants overall, and 75% of women from the DR site reported the reason for this preference as not interrupting sex. Ease of use and discretion were also important reasons for this preference . In a quA final insight was that women weighed certain trade-offs between duration of use and potential health effects they may perceive. Most women liked the idea of continuously using an IVR for several months at a time. Indeed, in our study, some qualitative sub-study participants envisioned using a vaginal ring like a woman might use an IUD. Others suggested that a longer duration of use would be acceptable if it were possible to periodically remove the ring to clean it. Women's desire to clean the ring may have been due to observing some ring discoloration from use during menses. As reported previously, most participants either experienced no change in menses or lighter bleeding and/or fewer days of bleeding during product use . It is uOur findings suggest overall high acceptability of the 90-day TFV/LNG IVR, but also point out that modifications to decrease the size and/or thickness of the ring and to possibly extend the duration of use could increase acceptability even more. Moreover, the mostly transient concerns about ring size and thickness expressed by women who are naïve to vaginal product use suggests the need for materials and/or communication strategies that can demystify the ring, how it is inserted and removed and where it sits. Finally, women's concerns about potential health effects with longer and more continuous use will require additional data and clear messages that inform women about the potential effects of ring removal and cleaning behaviors on effectiveness and vaginal health.


Mental health is highly correlated with a person’s social and economic circumstances, and the recent COVID-19 pandemic made this connection uniquely visible. Yet a discourse of personal responsibility for mental health often dominates in mental health promotion campaigns, media coverage and lay understandings, contributing to the stigmatisation of mental ill-health.In this study, we analysed how the concept of ‘mental health’ was discursively constructed in an online mental health peer-support forum in Australia during 2020, the period of the first two waves of the COVID-19 pandemic. An approach informed by Critical Discursive Psychology was employed to analyse all posts made to a discussion thread entitled “Coping during the coronavirus outbreak” in 2020, a total of 1,687 posts.Two main interpretative repertoires concerning mental health were identified. Under the first repertoire, mental health was understood as resulting largely from the regular performance of a suite of self-care behaviours. Under the second repertoire, mental health was understood as resulting largely from external circumstances outside of the individual’s control. The existence of two different repertoires of mental health created an ideological dilemma which posters negotiated when reporting mental ill-health. A recurring pattern of accounting for mental ill-health was noted in which posters employed a three-part concessive structure to concede Repertoire 1 amid assertions of Repertoire 2; and used disclaimers, justifications, and excuses to avoid negative typification of their identity as ignorant or irresponsible.Mental ill-health was commonly oriented to by forum posters as an accountable or morally untoward state, indicating the societal pervasiveness of a discourse of personal responsibility for mental health. Such discourses are likely to contribute to the stigmatisation of those suffering from mental ill-health. There is a need therefore for future communications about mental health to be framed in a way that increases awareness of social determinants, as well as for policy responses to effect material change to social determinants of mental health. Mental health and illness have been the subject of concern in Australia for some time, and the recent COVID-19 pandemic only increased such concerns . Given tA large body of recent and historical research has demonstrated that social, economic and structural factors such as loneliness and social isolation, unemployment or precarious employment, low educational attainment, poor housing and living conditions and inequality are strongly correlated with poorer mental health , 6. In bThe World Health Organization (WHO) states that mental health is “a state of mental well-being that enables people to cope with the stresses of life, realize their abilities, learn well and work well, and contribute to their community” . For theStigmatising attitudes towards those with mental illness are common in Australia  and elseThe widespread promotion of a bio-medical model of mental illness has corresponded with a reduction in personal responsibility stigma, however, stigma has not reduced overall; likely because biological explanations contribute to a perception that individuals with a mental illness are inherently and permanently defective . In contOne of the key ways in which the status quo in health is reinforced and maintained is through discourse and language . Mental During 2021–2022, nearly 5% of Australians reported accessing mental health resources using digital technologies, rising to 14.3% of those with a 12-month mental disorder . Online Online discussion forums are ideal sites for discursive research into how people construct meaning, objects and identities, and negotiate issues such as authenticity and accountability, in a naturalistic social setting . The useIn this study, we examine posts made to an Australian mental health peer-support forum during the COVID-19 pandemic, analysing how the concept of ‘mental health’ was discursively constructed by forum posters, and in particular, how attributions of responsibility for mental health were made  and associated consequences in terms of stigma.The data for this study was sourced from the website of a major Australian mental health organisation, which focuses on the common conditions of depression and anxiety. Among other resources, the organisation hosts online peer-support forums on a range of mental-health-related topics. As a reputable, government-funded, non-profit mental health organisation, this organisation’s forums afford users a strong foundation of institutional trust and established norms and values. The forums are publicly and freely available to anyone to view, though (free) registration as a member is required to post, and membership is restricted to Australian residents. Forums are monitored and facilitated by two or three paid moderators and a larger number of unpaid but trained peer mentors. All forums are group discussions (there are no private conversations); and members can post text-based messages of up to 2,500 characters to any discussion thread at any time, or reply specifically to the posts of others using the ‘reply’ button on each post.The forums, though publicly available to view, also afford users anonymity. The website’s Member Terms, which users must consent to upon registration, state that the website is a public place, and recommend that posters use a pseudonymous username and do not post personal information that they would not be comfortable sharing with a stranger or that might enable them to be identified. Username and forum role  is the only information which is displayed publicly. Members are not permitted to share personal contact details, such as location, phone number or email address, with other members. All posts are reviewed by a moderator prior to being published online, but once published remain visible online permanently.On 13 March 2020, soon after the COVID-19 pandemic was declared, a new forum thread entitled “Coping during the coronavirus outbreak” was created by a moderator. The data set for this study is comprised of all posts made to this thread between 1 and 2020 and 31 December 2020, a total of 1,687 posts. We focused on 2020 as this was the period of the first two waves of the pandemic in Australia, and the year during which most discussion activity occurred. Posts were downloaded by the first author on 13 September 2022.Key ethical concerns in this study were the potentially sensitive and personal nature of posts; the likelihood that posters may include a vulnerable population, namely those with a mental illness; whether the discussion thread constituted a public or a private space (and how participants were likely to have viewed it); and the potential impact of this research upon posters, for example when posts are reproduced outside of their original domain , 39. CenIn this study, obtaining informed consent from forum users was impracticable as posts were anonymous, identities and contact details of posters were not known nor available to us as researchers, and researchers are not permitted to post on the forums about their research. Anticipated benefits of this research included the potential to reveal important and unique insights into lay understandings of mental health through the analysis of naturalistic talk and interaction which took place at the height of the pandemic. Following consideration of the above ethical concerns and of guidelines by the Association of Internet Researchers , we deemAnalysis in this study drew upon the methodological framework of Discursive Psychology (DP), which studies psychological issues and objects as they are constituted in interaction through the use of discourse and language . In partIn this study, analysis was carried out in several stages . Firstly“What are you doing to look after your wellbeing during this time?” Three days later, there was another post by the moderator containing more specific questions to guide contributions, as follows:What thoughts are helpful for you at the moment?What are you doing to remain connected?How are you taking care of yourself and others?What are you finding helpful in reducing your anxiety during this time?In the discussion thread from which our data set was drawn, entitled “Coping during the Coronavirus outbreak”, the opening post by a moderator invited members to respond to the question, As such, discussion on this thread would have been significantly shaped by this guidance.In the data, ‘mental health’ was mainly conceptualised by posters in a functional sense as being able to cope with the demands of daily life. The term ‘coping’ was primarily used to refer to emotion-focused coping, that is, regulating emotional responses to a stressor through behavioural and cognitive strategies . OverallA prevalent interpretative repertoire was that mental health can be maintained or improved through the individual regularly practising multiple mental health-promoting, ‘self-care’ behaviours. Mental health was typically constructed in this way using multi-part lists and causal attributions, as exemplified in Extract 1:I have certain things I do every day because they keep me mentally healthy. They supportmy sense of self-esteem, personal identity and agency. They are: water my plants,squeeze and drink a citrus fruit, some random stretching, my French lesson, look at treesand feel awe for nature, write a gratitude list, exchange affirmations with three friends viatext, and connect properly, emotionally, with at least three different other people.I enjoy all that stuff so it’s no burden. It’s effective for me… Bang for my buck.Things I do **nearly** daily for my mental health are:walk outside, even a short walk just for circulation and fresh air.volunteering, giving it away, service to others, whatever you want to call it.meditate with an app.aromatherapy.journal .As you can see, it’s all about self-care, gentleness, recharging, connection and joy.Most important, do what works for YOU.long lists”) have received less research attention, possibly because of a focus by researchers on spoken interactions, which have certain constraints including a bias towards single turn completion units, a preference for progressivity and a default to minimisation [Extract 1 was part of a post made by a frequent forum user, in response to a post by a first-time forum user who reported experiencing anxiety, depression and low motivation during lockdown and asked whether anyone had “any ideas about creating structure”. In Extract 1, two lists are included of things the poster does to maintain their mental health - the first (lines 2–5) listing eight things that the poster reports doing every day (line 1), and the second (lines 8–12) listing five things that the poster reports doing nearly every day (line 7). Previous conversation analytic research has found that three-part lists are normative in interaction , reflectmisation , making misation . In thisIn the data set generally, multi-item lists of self-care practices such as these were frequently shared by forum members. One of the key reasons why users utilise connections with others via online mental health peer-support discussion forums is to share and receive information and practical advice . The shaLong lists may have a distinct rhetorical function in interaction: namely they construct disparate items as members of the same category, and infuse these items with a subjective meaning or evaluation that supports an overall argument . In Extrscript formulation [In Extract 1, the poster makes an explicit causal link between performance of self-care behaviours daily and the outcome of mental health , a mulation  that wasmulation . As illuEven when the limits of self-care for mental health were tested by the extraordinary circumstances of the pandemic, Repertoire 1 was often re-asserted. This is illustrated in Extract 2 - part of a post made shortly after the announcement of a second lockdown in one Australian city:In terms of actually managing ongoing anxiety around the situation, I’d say it’s time toamplify self-care routines. Find your inner child. Do something each day that makes youexcited. I’m not talking about something you just ‘look forward too.‘ I mean to dosomething that makes your heart skip a beat and makes you smile without realising.Build a pillow fort. Do it- this one was fun for me. Get your kids involved if you have any.Do a backyard experiment. Make that dream purchase (online if you can!). Sing karaoke.Offer to foster a shelter puppy if it’s within your means. Do something you won’t getbored of or won’t regret committing too anytime soon .I hope this helps and is something a little different to the usual “distract yourself whilststaying at home” activities we usually see.This post was made in response to a specific question from another member, “I wonder can anyone think of anything that has helped them?”, but also referenced posts from several other members expressing feelings of frustration, before offering the above advice. In Extract 2, the anxiety caused by the external situation is acknowledged (line 1), however a discourse of self-care is not only reinforced, but intensified to match the intensification of external pressures (lines 1–2). As in Extract 1, Extract 2 includes a long list of suggested self-care behaviours (lines 5–7), also to be practised daily (line 2) to manage anxiety (line 1), and causal links are made between these behaviours and increases in positive emotions (lines 2–4). Thus, the prevalent script formulation that the regular performance of a range of self-care behaviours will lead to the individual maintaining mental health, or managing mental ill-health, is reinforced.Repertoire 2 represented an alternative explanation for mental health. According to this repertoire, mental health is heavily and unavoidably impacted by circumstances and pressures external to the individual, and therefore is often not within the individual’s control. Under Repertoire 2, self-care routines were constructed as having limited efficacy for mental health while social, economic, and structural determinants of mental ill-health remained unresolved, as exemplified in Extract 3:I think this pandemic is preventing me from finding any sort of happiness at the moment.I’ve been unemployed since before the first lockdown, went through a million jobinterviews in-between with no leads, I’ve been heartbroken (maybe twice), I wentthrough health issues (but recovered after 1.5 months of hell) and I realise I have nofriends that actually care about me. I would have travelled the world for the first time inmy life and would have given me space to feel hopeful again but I can’t even do that. Ihave taken up knitting which is nice but it doesn’t let me escape from the sheer boredomand reality that I have no one.The post which Extract 3 was from did not appear to be a response to any other post specifically, however the post immediately prior to this one included a suggestion that “by keeping our minds active and our body’s safe, we can prevail through these uncertain times”. Extract 3 begins, like Extract 1, with an explicit attribution of causality, but in this case the poster’s unhappiness is attributed to factors external to the individual and outside of their control, namely the pandemic (line 1). Interestingly, another long list  is incluExtract 4 is another example of a poster drawing upon Repertoire 2:I have thought of calling the help line, but I can’t imagine what anyone there could say tohelp. I know all the things to do, reading here and in the media - getting a routine going,eating and sleeping well, exercising, reading a book, craft, talking with friends, avoidingsocial media and the news as much as possible etc. etc., but none of that replaces mybig need for face to face conversations with laughter and smiles, a hug, things to lookforward to, not worrying about our future, the Australian economy.This post from which this extract was taken was the third in a sequence of three posts. In the opening post, this forum member expressed difficulties in coping due to loneliness and isolation. A forum moderator replied, expressing empathy, and providing details of online resources and a telephone helpline staffed by mental health professionals. The above extract is from the third post in the exchange, in which the forum member replied to the moderator. In lines 1–2, the poster appears to anticipate that, were they to call a mental health help line, they would most likely be provided with advice about self-care along the lines of Repertoire 1, and therefore sees little point in calling. In lines 2–4, the poster demonstrates that their knowledge of self-care behaviours is already adequate, citing a long list of seven self-care behaviours, followed by “etc etc” (line 4). Generalised list completers such as “etc” signal not only that there are more list items that could be named, but that there are many more such items . As suchIn lines 5–6, the poster then cites another long list of external factors, most being conditions arising from the pandemic, that are currently impacting their mental health. These are described as “big need(s)” (line 5), constructing them as inherent human needs, and not matters of choice. The use of two lists set in contrast - as indicated by the contrastive conjunction ‘but’ (line 4) - serves to construct the two lists as different categories of things. The poster states that the items on the first list, which are all individual lifestyle factors, cannot replace (line 4) the need for a solution to the problems on the second list, and implies that their mental health or ill-health is primarily dependent on the items on the second list. The items on the second list correspond to social determinants of mental health which are larger than individual lifestyle factors, such as social support networks, and socio-economic conditions [The existence of two different explanatory repertoires of mental health created an ideological dilemma that posters were obliged to negotiate, especially when it came to explaining a current state of mental ill-health. As discussed above, under Repertoire 1 there was a prevalent script formulation that performance of a standard suite of behaviours of self-care would prevent mental ill-health, and an assumption that practising such behaviours was within the ability of every individual. Experiencing a state of mental ill-health was thus commonly oriented to by forum posters as an accountable matter. A pattern that occurred repeatedly was that, when reporting a current state of mental ill-health, posters without solicitation presented an account to others for their mental ill-health.account is a statement offered by a social actor to explain behaviour that is regarded in the cultural context as odd, wrong or untoward [justifications, in which responsibility for an act is accepted but the wrongness of the act is denied; and excuses, in which the wrongness of an act is accepted but responsibility for it is denied. Hewitt and Stokes [disclaimers, which are accounts offered prospectively for upcoming conduct that might be problematic, as opposed to the usual retrospective nature of accounting.An untoward . Social untoward , and memuntoward . Descripuntoward , and areuntoward . Scott auntoward  identifid Stokes  added thshow concession. Concessive patterns in general are recognised as “the negative or contradictory counterpart of causal constructions” [In the data, posters appeared to anticipate that a state of mental ill-health would be interpreted by others as evidence of a failure to perform standard routines of self-care, and thus accounts centred around the question of whether they had been performing self-care behaviours, and if not, why not. Accounts for mental ill-health were noted to take a remarkably similar form. First, posters would report a current state of mental ill-health or not coping, often with references to external pressures . Second, posters would state that they knew about the self-care behaviours that can be practised to maintain mental health , usually beginning with the words, “I know …”. Third, usually prefaced by the contrastive conjunction “but”, posters would re-assert continuing mental ill-health, often with further references to external pressures (Repertoire 2). This structure is similar to a structure Antaki and Wetherell  term a suctions” , that isuctions” . The maijustifications, in that any failure to perform standard self-care behaviours is constructed as permissible, given their ineffectiveness in solving the real problem of difficult circumstances. More usual in the data, however, was that posters did not directly dispute Repertoire 1, but instead struck a more delicate balance by embedding an affirmation of Repertoire 1 within descriptions of experiences inconsistent with the causal assumptions of Repertoire 1. Extract 5 is an example of this:A show concession structure is evident in Extracts 3 and 4 above, which have been used to illustrate Repertoire 2. The accounts in Extracts 3 and 4 might be said to take the form of Since Covid-19 rolled in, a deep seated anxiety has surfaced that I think I always knewwas present. I would say I’ve been a bit of a minor worrier all my life. These days I feelconstantly anxious, and the uncertainty of what the future holds or looks like I am findingparalysing. My emotions roller coaster from anger, to fear, to total numbness and I amcrying a lot.The second lockdown hit me hard and I did speak to a psych who told me my feelingswere all natural in these unprecented times. I *know* all the things I should be doing,establishing a routine, eating well, sleeping well, exercising, reaching out to friends. I amdoing most of these - although I have little energy or motivation to exercise - I have takenup yoga and pilates, which can help sometimes with ‘staying present’.In the last week my role at work was made redundant due to my then employer being incrisis management mode, at the same time as Melbourne has gone into hard lockdown. Iam despondent and so incredibly sad.The author of this post identified themselves as a first-time poster who had recently joined the forums. Their post did not appear to be made in reply to any previous post. In Extract 5, a three-part structure is evident. In lines 1 to 7, the poster describes a current state of distress, along with references to the external factors of Covid-19 (line 1), uncertainty about the future (line 3) and lockdowns (line 6) – a description consistent with Repertoire 2. In lines 7 to 10, the poster inserts a reference to Repertoire 1, stating that they know about, and are carrying out, routines of self-care. Then in lines 11 to 13, the poster continues describing their state of mental distress (lines 12–13) along with further references to external pressures of unemployment (line 11) and lockdowns (line 12).disclaimer - a pre-account used to ward off in advance anticipated negative evaluations of future conduct [Despite repeatedly linking their decline in mental health to external circumstances  and social determinants such as unemployment (lines 11–12), the poster orients to their mental distress as an accountable matter, using moral language such as “should” (line 7) in reference to preventive routines of self-care. The poster appears to anticipate that, in response to a report of mental ill-health, others will question whether they know about, and practice, routines of self-care. The middle section of this three-part structure (lines 7–10) thus arguably functions as a  conduct .The poster’s marked emphasis on their knowledge of routines of self-care (line 7) defends against a potential undesired typification of their identity as someone who is ill-informed or ignorant. As Stivers, Mondada  argue, tIn line 8, the poster also pre-emptively wards off any typification of their identity as irresponsible, citing a long list of five standard items of self-care (line 8) and stating that they are doing most of these (line 9) and more (line 10). In this way, the poster signals agreement with and commitment to Repertoire 1, despite current experiences of mental ill-health. Regarding the effectiveness of the self-care strategies being practised, the poster adds a limited, hedged and vague statement that two of the items listed, yoga and pilates, “can help sometimes” (line 10). Although the poster’s report of continued mental ill-health in lines 11–13 would appear to call into question the commonly assumed causal relationship between self-care routines and mental health, the poster does not address this dissonance directly.not performing daily routines of self-care behaviours, an excuse was also typically included as part of their account. Excuses are “socially approved vocabularies for mitigating or relieving responsibility” for an acknowledged moral transgression [A similar three-part structure occurred repeatedly in the data set when posters reported and accounted for current states of mental ill-health. In cases where (unlike the poster in Extract 5) a poster disclosed that they were gression . Some ofJust signed up to this community because I just need support. I struggle pretty badly withanxiety normally so this pandemic has just pushed me overboard.I’m taking all the precautions against it but all I can think about is running out of food. Ilive in a small country town and people from the cities have been coming to buy from ourshops, leaving them just as empty but with longer delivery times. All I can think about isrunning out of food and my children going hungry.Sometimes I can bring it all back into perspective but other times I’m just locked intopanicked thoughts.I think I mainly just wanted to vent that, I know that I need to get some self caremeasures in place but I’m just struggling.The author of this post identified themselves as a new forum member (line 1) and did not appear to be responding to any specific previous poster, beginning this post with “Hello all”. In Extract 6, a similar three-part structure occurs to that which occurred in Extract 5. Lines 1–8 begin by describing a current state of mental ill-health in the form of anxiety (line 2) and panicked thoughts (line 8), along with references to the external factors of the pandemic . In lines 9–10, the poster references Repertoire 1, saying, “I know that I need to get some self care measures in place”, thereby disclaiming an identity as ignorant, and affirming self-care routines as normal, expected and appropriate behaviour. In line 10, this is followed by the conjunction “but” and a re-assertion of mental ill-health. Unlike the poster in Extract 5, in Extract 6 the poster implies that they do not currently have a regime of self-care behaviours in place (lines 9–10). The last phrase, “I’m just struggling”, thus functions both as a re-assertion of mental ill-health, and as an excuse for not having self-care measures in place. Previous conversation analytic research has shown that when an action or response is dis-preferred, accounts and excuses “overwhelmingly cluster around the issue of ability” , the advIn this study, we examined how mental health was constructed in an online mental health discussion forum in Australia in 2020, during the first wave of the COVID-19 pandemic. It was found that mental health was constructed using two main interpretative repertoires. Repertoire 1 constructed mental health as being largely the result of individuals performing a suite of self-care behaviours daily. Many posters reported that routines of self-care were effective in helping them to cope during the pandemic, and the effectiveness of self-care for mental health has been supported by subsequent research . Repertoabout health but what people do when talking about health [In discursive psychological research on health topics, the key issue is not what people say t health . The offt health  notes tht health , talk abt health . When pet health .That forum posters experiencing mental ill-health oriented to this as a state requiring an account, even amidst the exceptional circumstances of the pandemic, indicates that mental ill-health is still widely viewed as morally problematic. This is perhaps an unintended consequence of mental health public awareness campaigns that are perceived as placing the burden of responsibility on individuals to manage their mental health . In the At a macro level, the patterns observed in this study indicate the societal pervasiveness of notions of individual responsibility, self-control and lifestyle characteristic of the ‘new public health’ . In modeLimitations of this study include the lack of demographic information for forum posters, the possibility of over-representation of certain groups such as people with a mental illness, and difficulties in accurately discerning the intended meaning of posts due to the lack of opportunity to ask speakers for clarification or more detail. In addition, this study analyses posts made in 2020 during the first two waves of the COVID-19 pandemic in Australia, to a peer-support forum specifically dedicated to coping during the pandemic, and findings thus may not be generalisable to other contexts.The results of this study suggest that the dominance of Repertoire 1 in societal discourses of mental health in Australia has some unproductive effects in terms of personal responsibility stigma. To reduce stigma, it is recommended that, in future mental health communications, any advice which may increase attributions of personal responsibility, such as self-care advice, be tempered with an acknowledgement of the limits of self-care in the face of difficult circumstances and larger social and structural determinants of mental health. In addition, language and metaphors can be chosen that construct mental ill-health as a societal-level and not just an individual-level problem. For example, a metaphor for unequal circumstances which several posters used was that of boats in a storm - as one said: “We are not all in the same boat, we are in the same storm. Some of us are in yachts, and some of us are in rowboats, some of us are clinging to driftwood. We are all in different boats in the same storm”.More fundamentally, there is a need for policy responses aimed at reducing the social determinants impacting negatively on mental health, targeted at multiple levels . As outl


To understand the perception of medical communication and needs of familymembers with loved ones in intensive care.The study was mainly qualitative and exploratory, with thematic analysis ofcomments made by 92 family members with loved ones in intensive care unitswhen answering in-person interviews comprising the Quality of CommunicationQuestionnaire (QoC) and open-ended questions about their need for additionalhelp, the appropriateness of the place where they received information, andadditional comments.The participants’ mean age was 46.8 years (SD = 11.8), and most of them werefemale, married and had incomplete or completed elementary education. Thefollowing themes were found: perception of characteristics of medicalcommunication; feelings generated by communication; considerations aboutspecific questions in the QoC; family members’ needs; and strategies toovercome needs regarding communication. Characteristics that facilitatedcommunication included attention and listening. Characteristics that madecommunication difficult included aspects of information sharing, such asinaccessible language; lack of clarity, objectivity, sincerity, andagreement among the team; limited time; and inadequate location. Feelingssuch as shame, helplessness, and sadness were cited when communication wasinadequate. Family members’ needs related to communication included moredetails about the loved one’s diagnosis, prognosis, and health condition;participation in decisionmaking; and being asked about feelings,spirituality, dying and death. Others were related to longer visitationtime, psychological support, social assistance, and betterinfrastructure.It is necessary to enhance medical communication and improve hospitalinfrastructure to improve the quality of care for family members. This context can generate a“whirlwind of feelings”,2,3Several factors can influence family members’ suffering and stress. These include theloved one’s health condition in itself; the fear of their loved one dying;significant changes in the dynamics of personal life resulting from their lovedone’s illness; the ICU environment, which is typically noisy, seems impersonal andcontains frightening equipment, such as monitors and mechanical ventilators; and theenvironment of the waiting room or hospital corridor, where family members wait fornews about their loved one’s health.,2,5,6,7 In the latter case, family members become thepatient’s “voice,” and some responsibilities fall on them, such as participating inthe therapeutic decisionmaking process, which can cause additionalsuffering.,2,3,8The anguish caused by waiting for information makes communication with the physiciana decisive moment that may reduce or increase family members’ uncertainties. In thecontext of Brazilian ICUs, this is still usually done by means of medical reportsand, less frequently, in family conferences. One of the functions of thiscommunication is to clarify doubts regarding diagnosis, treatment, and prognosis. Anadditional function is for the physician to obtain information about the loved oneswhen they are not able to communicate and manifest their perspectives, needs,values, and desires.  Physicians shouldwelcome, build and maintain rapport with family members; speak objectively, in clearlanguage, without using technical terms; encourage them to participate actively inmeetings, asking open-ended questions and providing room for them to express theirperspectives, doubts, and feelings; listen carefully, responding to their emotionswith empathy and compassion; and clarify their doubts, so that they have clarityabout the situation and feel more confident in participating in decision-makingprocesses whenever they wish to do so and whenever it is necessary. ,3,8 In spite of theimportance of communication, studies have shown that some family members do notfully understand their loved ones’ diagnosis, care plan, and prognosis, and theyfeel that professionals communicate impersonally without showing empathy orcompassion. ,2,5,7It is well established that in communication between physicians and family members,both the patient and their family members should be considered members of theteam.Knowledge about the perception of family members whose loved ones are in intensivecare regarding the quality of medical communication, as well as knowledge abouttheir needs, is essential to evaluate the level of care being provided and to helppromote measures aimed at reducing potential damage to the health of patients andtheir family members.,11Curtis et al. developed an instrument called the Quality of CommunicationQuestionnaire (QoC) to assess the quality of medical communication by patients withchronic diseases at the end of life, containing items related to generalcommunication and end-of-life communication. and subsequentlyvalidated in 2021.Furthermore, it was adapted for family members, translated into Brazilian Portugueseand validated with permission from the authors of the original scale. During the interviews with familymembers, when requesting their evaluation of each QoC item, many of them madespontaneous comments to justify their ratings. These comments were recorded inwriting by the interviewer. Spontaneous comments appeared in the study by Russel inAustralia, as well asin the study by the authors of the present article when applying the QoC topatients.The QoC was translated and cross-culturally adapted to Brazilian Portuguese in2017,Considering the importance of family members’ viewpoints and perceptions of theconstruction of knowledge that can support future actions to promote the quality ofcare, the objective of this study was to understand the perception of medicalcommunication and the needs of family members with loved ones in intensive care.UniversidadeFederal de Santa Catarina under number 77721917.8.0000.0121, with thepermission of the authors of the original scale.This study’s design was mainly exploratory and qualitative, but it has a quantitativeapproach to characterizing the participants. It is part of a larger project forvalidation of the QoC, approved by the Ethics Committee of the Written informed consent for family members’ information to be published was providedby the family members.The study participants were family members of patients hospitalized in the ICU infour public hospitals in southern Brazil.The selection was made by convenience, inviting eligible participants who werepresent in the study location at the time of the researcher’s visit.The inclusion criteria were being a family member of a patient hospitalized in theICU for at least 24 hours, being 18 years or older, and being Brazilian.The exclusion criterion was having difficulty communicating due to being emotionallyoverwhelmed (as observed by the nursing team).The invitation to participate in the study was made in person after explaining thestudy objectives, the form of data collection, the possibility of publishing itanonymously, and all ethical precepts. The family members who agreed to participatein the study received two copies of the free and informed consent form to read andsign, keeping one of the copies.,11 The subscales can be used separately ortogether, depending on the aspect of communication being studied. The version ofthe QoC adapted for family members is exhibited in The QoC contains 13 questions divided into two subscales, one on generalcommunication (Items 1 to 6) and the other on end-of-life communication (Items 7to 13).The data collection instrument was a structured questionnaire withsociodemographic variables ; cause of hospitalization in the ICU of familymembers’ loved ones; the QoC and family members’ spontaneous comments to justifytheir ratings in each QoC item during the interview, which were recorded inwriting by the interviewer; and the following three open-ended questions: “Howwas your perception of the place where you received the medical report?”, “Whattype of complementary assistance would you like to receive?”, and “Are there anyother questions that are not included in this questionnaire that you would liketo be addressed?”.The main focus of this study is on qualitative data. The quantitative aspects ofQoC are not approached in the present study because they have already beenpublished.The questionnaires were administered by in-person interview either in the waitingroom, when it was possible to maintain privacy, or in a reserved place in thehospital.Data collection was conducted by a previously trained researcher before or afterthe family member visited the hospitalized loved one. Data collection occurredbetween October 24, 2015 and August 2, 2016, as well as between August 15, 2018and October 25, 2019.The interviews lasted at least one hour because family members took advantage ofthe opportunity to talk about their experiences, needs, and perceptions, towhich the researcher listened attentively and recorded their responses.The data were entered in a database using Statistical Package for the SocialSciences (SPSS), version 26.0.Analysis of sociodemographic data and the causes of hospitalization of familymembers’ loved ones was carried out using descriptive statistics: Student’s ttest (t) to compare two groups in relation to continuous variables, andPearson’s chi-square test (χ2) for two groups of categorical variables.The null hypothesis was rejected if its probability was less than 0.05.Analysis of qualitative data was thematic, starting with a reading of the reportsfor familiarization, without marking the text, followed by the identification ofunits of meaning (words or terms), units of context (search for contextsinterrelated to the units of meaning), and nuclei of meaning (themes), relatingand interrelating the previous units.Participants’ comments to illustrate some units of context are identified in theresults with F and a number for females  and M and a number formales .The mean age of the 92 family members participating in the study was 46.8 years(standard deviation - SD = 11.8), with no difference by gender . Other sociodemographic characteristics of the participants are exhibited inThe causes of hospitalization of the participants’ loved ones as reported by them aredisplayed in The following themes were found: perception of characteristics of medicalcommunication; feelings generated by communication; considerations about specificquestions in the QoC; family members’ needs; and strategies to overcome theperceived needs regarding communication.The characteristics that facilitated communication with physicians with familymembers included an adequate location for the conversation and the physiciansdedication, attention, eye contact, listening skills, expression of their feelings,questions about things important to their loved one and about their concerns, fearsand anguish.The characteristics that limited communication were diverse. One was the lowintelligibility regarding what physicians were talking about, with one family memberexclaiming that physicians “should not use expressions that we do not understand”(F01). This fact was further aggravated when family members felt that the physiciansspent little time talking to them, making them feel like the physicians were “in ahurry”, “not talking to them enough” and leaving them “without understandinganything” (M01). They also mentioned their feelings of shame when “asking what those‘bad words’ mean” (F02), referring to medical terminology used duringcommunication.The lack of objectivity and of details about the loved one’s health condition waswell exemplified by one of the family members: “They only answer: ‘We are takinggood care, everything’s going to be okay’“ (F03). Regarding participation indecision-making, one family member expressed that, as they did not understandanything, “the doctor takes care of it all alone and doesn’t ask me anything” (F04).Some family members mentioned their perception of physicians’ lack of sincerity, asillustrated in the following statement: “Sometimes I feel like the physicians feelsorry for me and hide the fact that my husband doesn’t have a chance of surviving”(F05).The discrepancies between the information provided by the team members was alsohighlighted, for example, in the following statement: “[...] one physician says thestate is terminal and there is nothing else to be done; another says that noteverything is lost. They should all reach a consensus [...]” (F06).The place where the information was provided; either in front of the loved one or inthe corridor, without a space reserved for the conversation; was considered anotherlimiting aspect of communication by some family members. Others, however, mentionedthat, provided that the necessary information was communicated, the location was notimportant.Regarding attitudes, some family members reported that certain physicians did notseem to care about them or their loved ones, and they had the sense that they were“more committed to treating the disease and not the patient as a whole” (F07) or“mostly worried about curing and not about caring” (F08).One feeling expressed was anguish while waiting for information, for instance, whilethe mother of Participant M02 was being transferred to the ICU after heart surgery,the participant reported that he was waiting “in a state of immense affliction, andno one came, not even to say that everything was fine” and that this was “totallyinhumane” because “for someone who is waiting, minutes turn to hours”.Attitudes of disrespect and lack of sensitivity on the part of physicians werereported, not only affecting the relationship between the physician and the familymember but also generating, for the family member, feelings like helplessness,sadness, a sense of humiliation, and doubt regarding the quality of the treatmentprovided, as illustrated in the following statement:[...] after my mother’s surgery, I went after the evening visiting hours wereover, but I had the nurse’s permission. The doctor humiliated me in front of theteam, saying that it wasn’t time to give out information about the patient’sclinical status and that I would have to wait for the medical report. Afterthat, since I know that he’s the one who’s giving the medical report, I don’tstay to receive the information. [...] the situation generated a feeling ofhelplessness and sadness for having to leave my mother in the hands of aninsensitive person, generating doubts about the treatment she would bereceiving, since that physician treated me so disrespectfully (M02).Family members’ considerations about specific questions in the QoC, such asparticipation in decision-making, were diverse. While some did not want to or evenbelieve that they should participate in decision-making, others thought that thisparticipation “should be for everyone who wants to” (M03), and participant M04expressed the desire to participate in all “meetings” about their spouse’s healthstatus.Regarding the physician’s approach to family members’ feelings, if the loved one’shealth condition worsened, some family members mentioned that the physicians did notask about their feelings, and others said they turned to other professionals.Participant F09 mentioned talking to nurses about their fears, and another commentedthat “the psychologist is the one who talks about ‘those topics’“ (F05).In relation to spiritual and religious beliefs, one family member said that they didnot know whether asking about beliefs and spirituality was “a doctor thing”(F10).Regarding the question as to whether the physician talked about how long their lovedone might have to live, while relative M05 commented that the doctors said that itcould be at any moment and that the “organs were shutting down”, another said that“physicians could not talk about this subject because they did not know” (F06).Regarding physicians talking about death and dying, one family member mentioned thatthe physicians did not like “talking about death” (F11), and Participant F12 saidthat physicians ensured that the patient would not feel any pain. However, oneparticipant considered that all physicians should explain “the details before death”(F13).Klebsiellapneumoniae carbapenemase, wanted to know more details about the risksof contamination.The needs felt by family members were diverse. Those related to communicationincluded wanting more information about the loved one’s health condition, with moredetails, “not just the same thing, ‘unstable, not reacting, very bad’“ (M05).Participant M06, family member of a patient colonized by Lack of information when a loved one was transferred from the ICU to the ward wasalso reported by a family member who went to the hospital to visit him in the ICUand found that he was no longer there. In their words, “There is a total lack oforganization regarding information. If I had known sooner, I’d have come prepared tostay as a companion” (F13).Regarding access to information, the need of a medical report during the night forfamily members who work during the day was mentioned, as well as, of the possibilityof the medical report being provided by nursing professionals at night and providinginformation by telephone.Regarding visitation, several family members suggested longer visitation times, asthey felt the need to stay more than 30 minutes (duration of the visit) with theirloved ones. They also suggested that they should be able to stay longer, dependingon the health condition or if the loved one was at the end of life. Furthermore,they suggested that procedures be performed at a time that did not interfere withthe visits.The need for support from other professionals from the team was mentioned by somefamily members who required assistance from a social worker for issues such associal security benefits, as well as psychological support during thehospitalization period.Regarding infrastructure, the place where the medical report was provided was alsoconsidered inappropriate among family members with loved ones admitted to hospitalsthat did not have a waiting room because they waited for the visit and received themedical report while standing in the corridor. Therefore, they mentioned the needfor a waiting room and a place reserved for the physician to deliver the medicalreport. Furthermore, they mentioned the need to improve the conditions of someexisting rooms because some family members felt that the waiting room was not“decent” (F14). However, some family members underscored that they did not considerthe location important, provided that the medical report they received met theirinformation needs. They also reported the need for accommodation for family memberswho did not live in the city and who could not afford a hotel or who lived far fromthe hospital. Moreover, according to family members, accommodation would make itpossible for family members to take turns accompanying patients.The need for greater care and “more attention from the nursing team” (M08) or theteam as a whole was also mentioned. Participant F15 mentioned that she would likethe team to be more careful with their loved one’s belongings because their mother’sdental prosthesis had been lost. Another commented that “the technician said she wasnot going to make an effort alone to take care of hygiene” (M08) and that theconflicts with the team left the loved one and the family member distressed,exclaiming that, “After all, they aren’t doing it as a favor!” (M08). Moreover, onefamily member commented that her brother needed to have his diaper changed, and upto the end of the shift, he had not been cleaned.Family members cited some strategies they used to overcome communication needs. Oneof them was to talk about their feelings with the nursing team because they wereattentive professionals. Other strategies were developed to clarify their doubtsabout the information shared, which included asking the physician “everything allover again” (F16), asking the nursing team about what they did not understand, andseeking further information on the internet when they did not understand the wordsused by the physician.Our study showed that some physicians were attentive, made eye contact, listened tothe family members, and asked about their feelings and things important to the lifeof their loved one, thus communicating effectively and developing a positive rapportwith them.This finding is in line with that of an integrative review conducted in 2018 on thesatisfaction of family members of patients hospitalized in the ICU, which found thatprofessionalism, competence of the team, and respect for the family and the patientwere related to better experiences for family members.On the other hand, our study also demonstrated many characteristics that limitedcommunication, such as sharing information in language that was not accessible; withlittle clarity and objectivity; without details and without clarification of familymembers’ doubts, performed in a “hurried” manner without sufficient time and withdisagreements within the team. Along with these perceptions, the feeling that thephysician was not being sincere as well as feelings of shame related to askingquestions contributed to many family members not understanding their loved ones’clinical diagnosis and prognosis. The reported feelings showed how inadequatephysician communication and distanced attitudes aroused negative feelings thatincreased family members’ suffering, including anguish caused by delays in receivinginformation, feelings of helplessness and sadness, and the sense of humiliationcaused by disrespectful attitudes from medical professionals. These attitudes evencaused some family members to feel that some physicians were insensitive andprimarily concerned with curing the patients’ diseases rather than taking care ofthem as people and that they therefore did not care about their feelings. The importance of sincerity in sharing information wasemphasized in this and other studies.,5,6 Some studies included in the review conducted in2018 reported physicians being rude, aggressive, insensitive, and lackinginterpersonal skills. In somestudies included in the 2017 review, the family members perceived that physiciansdid not consider their feelings, did not show empathy or compassion, did not taketheir presence into consideration, and shared information about their loved ones inan impersonal manner. It hasbeen well established that effective communication, support, care, and rapport withboth the patient and their family members, as well as clarification of their doubts,are necessary to increase family members’ confidence and participation indecision-making processes and to reduce and/or prevent their suffering. ,3,8These findings are similar to those of a systematic review published in 2017 onend-of-life care in the ICU, which showed a high percentage of family members whodid not fully understand their loved one’s diagnosis, prognosis, and care and whoreceived contradictory information.,5,7 A quantitativestudy with 40 family members highlighted the importance of implementing measures toprovide accurate information on the patient’s prognosis, the care provided, and theICU routines, in addition to recommending ways for the family members to contributeto patient care.In our study, family members expressed the need to receive more information abouttheir loved ones’ disease, prognosis, and clinical conditions on a daily basis in amore detailed manner. This finding aligns with other studies. Theirinclusion in medical visits allows them to be heard, to clarify their doubts, toparticipate in therapeutic discussions and to speak about patients’values. Additionally,when they are encouraged by physicians to speak more in family conferences, theyfeel more satisfied with the care provided.Involving family members with the team’s treatment process has also beenrecommended.Regarding the level of family members’ involvement in decision-making, whereas somewould like to participate— and one even mentioned that they would like to attendteam meetings on the health of their loved one—others reported that they did notwish to participate. becausethey are usually not asked whether or not they prefer to be included.  While some studies have shownincreased satisfaction of family members with greater participation indecision-making processes,,2,6,7,8 others have shown that this is not always the case.A study with family members of patients from 78 ICUs found that half of them did notwant to participate and that, among those who participated, there was greateremotional stress. A hypothesisfor this increased stress when participating in decision-making is that familymembers did not receive enough information to sufficiently understand their lovedone’s diagnosis, therapeutic possibilities, and prognosis in order to make them feelconfident and safe in decision-making.Other studies have also shown this difference in whether family members wish to beinvolved in decision-making. Therefore, it is essential for physicians to evaluatethe degree of involvement that the family member wishes to have in thedecision-making process,2,6 Adequatewaiting rooms can reduce the risk of anxiety, posttraumatic stress, and depressionin the family, and single roomsat the end of life are highly valued by family members.Another need reported by family members in our study was an adequate waiting room orimprovement in the conditions of the existing room, as well as a place reserved forthe medical report in order to avoid communication in corridors. Furthermore, in ourstudy, family members mentioned the need for accommodations where family members wholived far away from the hospital or in other cities could rest. Other studies havereported family members’ discomfort regarding the place where the information isshared.Regarding the strategies adopted by family members to overcome their communicationneeds, one strategy found in our study was to reach out to the nursing team toclarify their doubts and talk about their feelings.,3,5,6,7 An action usuallyperformed by nurses to reduce family members’ uncertainties and emotional stress isto give a tour of the ICU environment and demystify it, explaining the procedures,devices, and dynamics.,2,6 Therefore, the quality of nursing care is an essentialcomponent for family members’ satisfaction.,6Different studies have highlighted nurses as a great ally to family members, whoclassified nurses as their main source of information and important emotionalsupport. Furthermore, inappropriateconversations on the part of the team, especially the nursing team, were detrimentalto family members’ well-being.On the other hand, in our study, although the nursing team was indicated asfundamental for emotional support and for clarifying family members’ doubts, somereported that there were members of this team who paid little attention and wereless committed to their loved ones, citing, as examples, loss of their belongingsand problems related to hygiene. Studies have shown that when there is a lack oftrust in the nursing team, family members become more vigilant. as it helps family members deal with the death of theirloved one, reduces their sense of guilt, and reduces negative psychologicalimpacts.,6Although many family members wanted to talk about their beliefs and spirituality,there were participants who believed that this was not the physician’s job. Theliterature, however, has shown that care for family members’ spiritual needs isextremely important and is associated with greater satisfaction with thedecision-making process at the end of life,This also occurred when asking about family members’ feelings in cases when the lovedone got worse, especially in cases related to death and dying. Although some familymembers did not consider it to be the physician’s job to ask about these topics,many mentioned that they wanted more details on these subjects, and some commentedthat it seemed that physicians did not like to talk about death or about how muchtime their loved one had to live.,6,7 A review published in 2020 analyzing theperspective of family members with loved ones in end-of-life care in an ICU foundthat inadequate care, lack of support, and failure on the part of healthprofessionals to provide updated information on loved ones’ health conditions causeemotional distress for family members. On the other hand, studies have demonstrated that providingwritten information helps family members know what to expect from the end-of-lifeprocess, brings a greater sense of control, and better prepares them for the deathof a loved one.,19Studies have demonstrated physicians’ difficulties in communicating with patients andtheir family members at the end of life.,3,7,8 Makingvisiting hours more flexible is a change that can decrease the risk ofpost-intensive care syndrome in the family and increase their satisfaction withcare.,3 When associated with the active participation ofthe family member in the care of the patient, respect for cultural values andemotional and spiritual support strengthens the bond with the team and facilitatesdecisionmaking.Furthermore, family members value the opportunity to be present at the moment oftheir loved one’s death.Additionally, the family members in our study reported the need to spend more timewith their loved ones during visits, especially towards the end of life. Theimportance of this closeness to positive experiences for family members has beenindicated in several systematic reviews.,2,6Although it was not found in our study, other studies have demonstrated the influenceon family members of factors related to the ICU, such as the volume of sounds, thebrightness of lights, and the cleanliness of spaces.The limitations of our study included the selection of participants according toconvenience and the fact that not all family members made spontaneous comments aboutall QoC items, even though all of them answered the open-ended questions.Nevertheless, our study has demonstrated the need to improve various aspects ofcommunication and professionalism among some physicians who work in intensive care.These include considering family members as part of the team; welcoming them in anappropriate place with sufficient time; showing respect, attention, commitment,empathy, and sensitivity; listening to their needs, doubts, concerns, expectations,feelings, beliefs, and spirituality; sharing information using clear and accessiblelanguage with details about their loved one’s clinical conditions, diagnosis,prognosis, and anything else they express that they wish to know; including them inthe decision-making process; and discussing death and the process of dying, wheneverpossible and desired by the family. In the institutional sphere, the availability ofadequate environments for family members is a demonstration of appreciation andrespect for them. Therefore, it is essential to have appropriate spaces for waiting,meetings, and family conferences, in addition to a place where family members cansleep or stay whenever possible.This study aimed to understand the perception of family members whose loved ones werehospitalized in the intensive care unit regarding medical communication, as well astheir needs.Diverse characteristics of communication were considered by family members asfacilitating or limiting communication, showing the importance of greaterpreparation of physicians and other team members to communicate effectively with oneother, with patients, and with their family members, considering theirinformational, emotional, and spiritual needs. Furthermore, it was possible toobserve the importance of caring for the patient—family relationship. Promotinginfrastructure that offers comfort and privacy and demonstrates appreciation andrespect for those receiving and providing care; facilitating access to informationand ensuring comprehension; making visiting hours more flexible; ascertaining thedesired degree of involvement in the decision-making process; and talking aboutdeath and dying are important aspects that need to be addressed.It is hoped that the results of this study will encourage the development ofstrategies aimed at improving the communication of physicians and teams with oneanother and with family members, in addition to strategies to meet family members’needs, thus promoting well-being and reducing emotional suffering.