The Welsh vote for “leave” in the Brexit referendum surprised some academics and analysts due to its strong preference for Labor and its close financial ties to the EU. It also brought up a debate about apparent differences in Welsh and English attitudes towards race, ethnicity, and migration, with the former often claiming to have a more positive stance regarding the presence of ethnic minorities and foreign nationalities. This paper proposes to analyze discourse posted on Twitter during June 2016, specifically targeting Wales and England with the aim to offer insight into the perceptions and beliefs of Welsh and English individuals on the platform and if attitudes on race, ethnicity, and migration played a significant role. Counterfactuals are checked with posts from the first few weeks of the refugee crisis in Afghanistan in 2021, the war on Ukraine, and the announcement of the Rwanda policy. The current discussion of Welsh national identity includes its claims as a “nation of sanctuary” and that understands oppression and marginalization. Thus, Welsh perspectives on Brexit become an interesting viewpoint to comprehending ethnic minorities and foreigners as it creates a possible conflict between the institutional discourse, cultural views, and perceived economic needs. In this context, this paper takes the view that Twitter is an area where individuals post their thoughts uninhibited, and where we can conduct an aggregate analysis of that public sentiment. However, despite voting for Brexit by 52.5%, Wales is referred to as a Labor stronghold due to its electing a majority of Labor MPs for the House of Commons and its local authorities and maintaining a Labor government since devolution. This has led to views and policies that claim Wales to be more progressive and welcoming to ethnic minorities and foreigners in comparison to its neighbor.Although Twitter data is not statistically representative of any population, it is exemplary of how conversations flow during major events. Studying the content of tweets has become a staple in public opinion research, aiding in analyses of information flow, fake news dispersion, and political opinion building .Statistics of the population of Twitter are bit more difficult to dissect, as they are subject to much variation and little update from the site itself.In Wales, 98% of households with at least one child have internet access, dropping to 87% when analyzing total households, with Powys the only local authority among the ten with lowest Digital Propensity ScoreBy analyzing the rhetoric appearing during June 2016, I am able to identify how English and Welsh tweets are similar or differentThis paper contributes to research into the discourse in Wales and England during Brexit, with a particular view on Wales and its unique characteristics. Rather than consider the nation of Wales as a region of England, we can understand its peculiarities and needs and how its opinions are shaped. The complexity of the Brexit rhetoric and vote are briefly discussed, particularly its overall treatment as an electoral event between Conservatives and Labor rather than an outlet for various sentiments surrounding immigration, austerity, and lack of access to resources. Some comparison is made to topics that roused similar sentiments regarding immigration especially, namely the Afghan and Ukrainian refugee crises and the policy to send asylum seekers to Rwanda (“Rwanda policy”).2The Brexit referendum occurred on 23 June 2016 and asked the simple question of British citizens: stay or leave the European Union? Many analyses have approached the topic from different perspectives, attempting to understand the breadth and impact of fake news, the lack of coherence with the Conservative Party, the lukewarm campaign by the Labor Party, and the intense polarization that created a seemingly perpetual ideological cleavage in British society.Despite the vote being unified, that is, specific regions had no more no less say than other, much attention has been given to the differences in how the UK geographically divided itself in this vote. Scotland and Northern Ireland voted to remain in the EU, as did London, but Wales did not. This was a seemingly a surprise to some, as Wales has been a Labor stronghold for 100 years, electing a majority of Labor MPs to the House of Commons and having a Labor government since devolution, and largely depended on EU funding, leading to politicians and analysts believing it was a guaranteed “remain” overall. However, only five of its local authorities chose “remain”.Both in the referendum itself and in the analyses, Brexit is often treated as common electoral event, rather than a unique experience that did not explicitly map on to typical party identification. Several analyses have attempted to align regions’ choice with their party allegiances, some looking for the explanation in the national UK Parliament vote and others in the European Parliament vote . In WaleThe Welsh Labor campaign for “remain” is considered to have been weak, as if a Labor vote equalled a “remain” vote and therefore a “sure thing” . Along wOn the other hand, the sentiment that Wales is a more tolerant nation has been pointed out as a “top-down” policy, rather than an actual cultural characteristic . Wales dNevertheless, as a country, Wales has positioned itself as “nation of sanctuary” and against stringent British migration policy . The offA few analyses have been made regarding the “leave” vote overall and in Wales. It has been positively associated with age and negatively associated with education and socioeconomic status . This, hIt follows that analyses on the rhetoric “getting Brexit done” show that Boris Johnson was able to capitalize on populist messaging reinforced place identification, propelling the connection of “left-behind” with an individual’s region. Those in the “geographies of discontent” looked forward to the promised levelling up investment and the protection of the NHS, while those with higher incomes were susceptible to the populist claims of cultural superiority . These tThis study aims to contribute to the field by analyzing what was said in English and Welsh Twitter during the month of the referendum. This is relevant given the few studies on Wales, particularly on ground-level opinion and the possibility to view fresh data on the topic. Evidence has been shown that geographical boundaries matter in Twitter , and tha3Using the Twitter API and the academictwitteR package, data on four themes was collected, selecting key dates and tweets geotagged as United Kingdom. The themes and dates were, respectivelyAfghanistan refugee crisis: 01–31 August 2021Brexit: 01–30 June 2016Rwandan policy: 01–23 April 2022Ukraine war: 24 February – 24 March 2022Collection on these was done based on a single word, “afghanistan”, “brexit”, “rwanda”, and “ukraine” . A colleIn addition to Twitter’s own geotagging information, to ensure the highest amount of completion, data from the users’ description regarding their location was also used to increase the number of tweets in the dataset. While this does not ensure perfect data and may generate some coding errors, it does allow for those users that do not automatically input their location but do include it in their bios or profiles in any number of ways . The process of manually including individuals’ named locations added between 0.5 to 1.5% of tweets to each dataset collect, and thus proved helpful in ensuring as many unique voices were added as possible.The number of unique users for each revealed similar proportions for each theme, that is, roughly 95% English and 5% Welsh; in the Brexit-only tweets, there were 17,238 unique English users, and 977 Welsh users, 94.6 and 5.4%, respectively.Due to the sizeable difference in tweets from English and Welsh sources, all clean-up and preparation was done separately to ensure English data did not interfere with the analysis of Welsh data. Consideration was given to randomly sample the English dataset to form a similarly sized corpus, but methodologically, as both datasets are the universe of tweets, it would not be a correct comparison.Typical data clean-up was conducted, removing stop words, punctuation, and numbers, and setting words to lower case. Hashtags were removed, but @ symbols were kept as these differentiate between mentioning someone and tagging them. A collocation analyses yielded word sequences that were statistically significant or that had a qualitative relevance, such as “Queen and country” or “no recourse to public funds”. Expressions such as these have been joined and analyzed as a single entity. A number of “control words” were also set, from the top features of each document-feature matrix and sentiment words and expressions were also included. Lastly, the theme words “brexit”, “rwanda”, “afghanistan”, and “ukraine” were removed. This was done due to their high number of mentions which confounded the analysis – since they are the topics of discussion, it was irrelevant that they should be included. Finally, the dataset was trimmed using the keywords mentioned  for R, enabling a quantitative text analysis approach, sentiment analysis, and a targeted qualitative analysis of specific patterns in speech and rhetoric.4The first analysis is of keyness, which uses chi2 with a Yates’s correction to determine the relevance of a particular word or expression to a corpus. Keyness may be affected by the size of each group in the corpus, so I ran three analyses: one for a “brexit” corpus, with Wales and England being compared; and one for each nation, comparing “brexit” and the second most discussed theme, “ukraine”.There are marked differences between each plot , as the A brief sentiment analysis of each nation’s corpus on Brexit shows that both nations turn particularly negative after the referendum and the positive sentiment present in Wales severely decreases afterwards. On the other hand, positive sentiment in England remained relatively constant throughout the month and slightly increased after 23 June. This is indicated by One possibility for text-as-data analysis is topic modelling, using algorithms such as latent Dirichlet allocation (LDA) or structural topic modelling (stm) to identify what words are most likely to appear in a discourse or that are more relevant . This isa posteriori (MAP) estimation are related on Using the LDA algorithm to plot topics,Conducting the same analysis for English tweets, starting with 46,066 observations, we find that the model assigns topics to 28,534 (61.9%). The most frequently assigned topic, with 1,993 observations, has the following most likely ten terms “britain, done, country, work, sad, europe, job, nation, economic, british.” These show more varied views than the stm modelling before, with celebration, fear, and commiseration among them. In both cases, some irony and sarcasm leads us to consider the sentiment classification; however, there is no indication would be enough to drastically alter results.These are not highly specific results, as limits of space do not allow for all topics to be analyzed fully. Moreover, LDA and stm give slightly varying images given their different measurements. Using the co-occurrence of features, we have an image of which words or expressions (rather than topics) are used most often in connection with each other. We can identify the keyness results from above in the plot, now understanding better the connections among them. For Welsh tweets, the words that centered the discussion were “vote” and “referendum,” branching out to “government” and words related to Wales itself. We can also identify the relevance of economy and immigration-related words, although they are not always connected to each other; a relatively strong connection is present between “vote-immigration-voteout.”For English tweets, the same words center the discussion, with “voteleave” strongly connected to “nhs” and a relatively strong connection between “left-voteremain-immigration,” although we cannot presume what “left” means in this context. Another strong connection can be identified between “vote-europe-independence-euro2016.” Both plots present outside nuclei with Wales showing “nationalism-english” and England “xenophobia-racism.” Both also show the connection between the NHS, the pound sign, and “petition”, referring to retweets with a petition for the “£350 million a week to the NHS’ promised by the Brexit campaign. These plots enable us to see a different type of overall discourse happening in these corpora.The identification of themes within topics can be quite tricky and requires care and transparency . In thisLooking at the tweets themselves, the content can vary widely from voting for “leave” to stop immigration to stating one’s ethnic minority status and a support for “leave”, to calling “leave” voters “racists”. There are 159 tweets that specifically use the word “regret” to refer to Brexit, including news reports, users who regretted their “leave” vote, and users calling out those who vote “leave” and were now regretting it. There were no tweets from “remain” supporters regretting their votes. The majority of high frequency tweeters (more than 50 tweets from the same user) come from England . On the other hand, tweeting fewer than five times was the norm for the majority of users, with 15,420 English users and 870 Welsh users tweeting at that frequency (5.6%). Therefore, we must take into account the possibility for outliers – high frequency tweeters shaping the corpora. Indeed, the user with 351 tweets was pro-Brexit; the Welsh tweeter with the most content tweeted 263 times and was also pro-Brexit. A cursory analysis of both high and low frequency tweeters showed similar results – while some of the features from high-frequency tweets do disappear when only low-frequency tweets are analyzed, the same level of contradiction and the same category of top used words appear for both nations.A qualitative categorisation of tweets based on the topics extracted both quantitatively and through the author’s reading of the dataset indicated that words associated with politics, unsurprisingly, were the most frequent among both Welsh and English tweets, respectively, 36 and 21%. References to country or nationality came second, with 13% for both. This categorisation can be found in the Lastly, using a keyword-in-context check from the quanteda package, I was able to isolate all tweets referring to race, immigration, and ethnicity, as well as the main topic related to the feeling of “left-behind”, the NHS.There were 2,477 tweets from English tweeters and 135 from Welsh users (5.4%). There was a total of 712 tweets about the NHS, with 164 reposting or quoting the following “Now keep the promise of £ 350 m a week for our – Sign the petition: EuRef Leave Brexit via @38_degrees.” Some do add their own views, but the majority are simply a retweet, a “copy and paste” which means it is not possible to determine if they were originally supporters or against Brexit. Tweets that used the pound sign not often mentioned public services other than the NHS, but savings, deficits, and the economy. Only 100 tweets combine these with the keyword “*migrat*”. Within those, the seven Welsh tweets were claiming immigration to be an inherent problem, but some claiming that Brexit is a ploy to instigate privatisations or bring in cheap skilled labor.There were 47 tweets from Welsh users about the race, immigration, and ethnicity and these are more consistent in claiming Brexit to be racist and wanting Remain as a view of “tolerance and unity”. This is not, however, the position taken by all tweets, simply a majority of them. There are 832 English tweets, and many focus on specific politicians such as Boris Johnson or David Cameron, as attack or defense, ask for promises to be kept, defend Brexit voters against claims of racism and anti-immigration sentiment; they also express solidarity to those who experienced racism following the referendum or defend the importance of immigration. On the other hand, there are also many who claim “free movement” and an excess of immigrants who “do not pay their share” is the root of the problem. Many perceive Brexit voters to have been lied to and led astray.Although other research has focused on the quantity of data that Twitter can bring, a geotagged analysis mean less content and a focus on the geographical dynamics rather than the conversation itself. That is, given that geographical borders are somewhat reproduced on Twitter, once we hone in to one theme in one location, the differences in how Twitter actually functions for different areas can surface.The Twitter metrics show that rather than a verified account having many replies and quote tweets, the Welsh pattern is to have single tweets without much interaction. Although higher engagement was expected from English Twitter, specifically with verified accounts generating many replies, this did not happen in the month of the referendum, despite the high traffic on the website. Quote tweets5Wales differs strongly from other British regions in history, language, population, type of government, and political ideologies. There is a dearth of regional research into Wales, and Welsh communities are indeed varied within the nation itself. Therefore, the analytical benefits from separating Wales from England should be self-evident and hopefully have been reinforced in this paper.This paper has questioned whether English and Welsh communities on Twitter differed in their debate of Brexit and if that included discussions on race, immigration and a feeling of “left-behind”. It avoided direct comparisons given the difference in size for each corpus, aiming to analyze each nation on its own. Nevertheless, it found several issues were raised during the month of the referendum, and that these varied across England and Wales. Wales is a small nation in comparison to England and this is reflected in the amount of tweets collected. A methodological choice was made to confine the search to a timeframe, rather than a similar number of tweets. The frequency plots show how this is relevant to capture a topic on Twitter when it is being most talked about. While not representative of the Welsh and English populations respectively, the dataset has been shown to be representative of the community of Welsh and English tweeters.Twitter is a self-selecting community of internet users. Internet access has increased widely across regions in both England and Wales, therefore, it can be argued that those who wish to be on Twitter are not stopped by lack of resources. Nevertheless, Twitter usage has never surpassed or even challenged that of Facebook. To use Twitter means to already be interested in posting your feelings, thoughts, and opinions to, in principle, strangers. The use of hashtags means attempting to insert oneself into a conversation and to mention someone, especially a verified member such as politician or media outlet, means possibly subjecting yourself to a wider audience. Therefore, the caveat that the population represented here is not statistically significant is essential. However, these are the people who chose to say something and reflect public opinion in real time.The majority of tweets are not engaged with in any way, or gather maybe one or two “likes”. Given that the vast majority of tweets are not interacted with at all, there is something to be said about engagement and screaming into the void. However, by limiting my sample, I get a closer look at routine Twitter life, even if we consider these significant events that impact it. Welsh users seem more engaged with other users (who may or may not be Welsh), with higher percentages of replies and retweets overall, but they do not seem to receive the same level of response. Wales is a small community and its Twitter community smaller still. Although Twitter reproduces echo-chambers , and doeWhen focussing the analysis on the specific keywords of race, immigration, and ethnicity and the main driver of the “left-behind” feeling – the NHS – the tweets show that while these might have been tangentially connected, overall, users would concern themselves with one or the other. There are several other words that would lead to a discussion on migration, the central words comprise less than 5% of the full dataset. English tweets were more likely to take on aggressive stances and supporting Brexit due to immigration – with a few being only against EU immigration and believing there would be an easier access for other countries and regions to the UK and its market. Welsh tweeters mostly position themselves either for immigration, including due to its aging population, or sceptic that Brexit would actually curb it. Undoubtedly, however, there are those that were for Brexit and against immigration; as there were, in similar proportions, those in the English tweets commiserating the “racist undertones” of Brexit.Overall, it would seem that being “left-behind” did in fact play a part in the discourse, but not necessarily as expected, as many doubted the NHS “£350 million a week” promised by the Brexit campaign and demanded the promise was kept. The issue of race and immigration was explored differently by each nation’s population, but not as strong as expected. The English tweets show a population that was much more conflicted about the topic, and the Welsh tweets do not show a population completely in agreement with the nation’s foundational myth.https://github.com/larissabr/tweetsdontvotepaper Further inquiries can be directed to the corresponding author.Data and code available at: The author confirms being the sole contributor of this work and has approved it for publication.


Persons with diabetes use continuous glucose monitoring (CGM) to self-manage their diabetes. Care partners (CPs) frequently become involved in supporting persons with diabetes in the management of their diabetes. However, persons with diabetes and CP dyads may require more communication and problem-solving skills regarding how to share and respond to CGM data.The purpose of this study was to describe the experiences of persons with diabetes and CPs who participated in the Share “plus” intervention, which addresses dyadic communication strategies, problem-solving, and action planning to promote sharing of CGM data among the dyad.Ten dyads participated in the Share “plus” telehealth intervention. Participants were interviewed during and after the Share “plus” intervention. Thematic analysis was used to analyze interview data.During postsession interviews, dyads described feeling a sense of shared responsibility yet viewed the persons with diabetes as ultimately responsible for the disease. Additionally, dyads shared that communication patterns improved and were able to recognize the negative aspects of previously established communication patterns. Dyads reported communication focused on hypoglycemia episodes while also differing in the frequency they reviewed CGM data and set alerts. Overall, dyads expressed positive reactions to the Share “plus” intervention.Share “plus” was helpful in promoting positive CGM-related communication among dyads and encouraged more CP support. CPs play an important role in supporting older adults with type 1 diabetes. Communication strategies help support dyad involvement in CGM data sharing and self-management among persons with diabetes. The prevalence of type 1 diabetes (T1D) is estimated to affect up to 22 million individuals worldwide, with 1.6 million being aged 60 years or older . Older aCare partners  often want to be involved with the person with diabetes. Newer CGM apps that allow for glucose data sharing have the potential to facilitate the involvement of CPs in supporting persons with diabetes. Data sharing apps allow CGM readings and predictive hypo- and hyperglycemia alerts to be displayed on a CP’s smartphone or smartwatch via allowance from the primary user, free with a compatible CGM device. In the Diabetes Attitudes and Wishes Study, persons with diabetes reported a desire for family members to be more involved in their diabetes . HoweverAlthough CGM with data sharing holds promise for involving CPs in diabetes management, there are barriers to data sharing. These include the persons with diabetes not wanting to include others in their care, communication challenges between the person with diabetes and their CP and difficulties setting up the data sharing mobile apps. The challenges in communication often reflect persons with diabetes and the CPs’ different expectations regarding family involvement . PersonsIn response to these barriers, we developed a multifaceted diabetes care and education intervention for older adults and their CPs. The SHARE “plus” intervention was delivered by telehealth and consists of a dyadic appraisal of diabetes, communication strategies, problem-solving strategies, and action planning. An assessment of the overall feasibility of the SHARE “plus” intervention is described elsewhere . HoweverThe Dyadic Coping Model DCM;  posits tThis paper reports qualitative aspects from dyadic educational sessions as part of a larger intervention, the Share “plus” . The ShaParticipants were recruited from an academic endocrinology specialty clinic and through social media flyers. Eligibility criteria included persons with diabetes who (1) aged ≥60 years, (2) diagnosed with T1D, (3) naïve to personal CGM use with the Dexcom Follow app, (4) glycated hemoglobin 6%-12% within the last 6 months, (5) able to read and write English, (6) own a smartphone compatible with the Dexcom G6 CGM, and (7) have a CP willing to participate. Persons with diabetes with or without an insulin pump were included. The Montreal Cognitive Assessment (MoCA) was used to screen participants . The MoCThe DCES used evidence-based communication strategies, such as motivational interviewing questions, problem-solving, self-efficacy enhancement, and action planning. Motivational interviewing questions were used to help the dyads identify and strengthen their personal motivation for data sharing in a supportive conversation. For example, persons with diabetes were asked, “On a scale of 1-10 how would you rate your confidence in your ability to share your glucose numbers with your partner” and then “tell me a little bit about why you did not choose a higher score?” CPs were then asked the same questions. Several self-efficacy enhancing strategies were also used such as role modeling to describe the experiences of other persons with diabetes and CP’s that were similar. For example, dyads were asked how comfortable they felt about data sharing. Examples were provided about how other persons with diabetes have described the benefits of sharing their diabetes, such as an increased sense of teamwork, support, quality of life, and decreased diabetes-related burden. The barriers to sharing glucose levels were also identified . Verbal persuasion was used to provide education about effective and noneffective communication strategies. Past performance  was also used to develop collaboration and knowledge. For example, if a person with diabetes reported that they viewed diabetes as their own illness, the dyad was asked to talk about something that they think of as shared such as planning a trip. Problem-solving action plan strategies included actions to take for hyper- and hypoglycemia and other CGM-related settings. Dyads were also asked to review problems that came up from the previous diabetes care and education session and generate solutions and options that might work moving forward. Last, several steps were taken to develop an action plan around agreed-upon communication strategies and CGM with data sharing settings and actions to take for hypo- and hyperglycemia see .Immediately after completing the 12-week Share “plus” sessions, dyads were invited to participate in individual interviews. Interview questions addressed dyad experiences and feedback regarding the Share “plus” sessions. Dyads were interviewed separately on Zoom (Zoom Technologies), by a trained research assistant and focused on using CGM, the Follow App (Dexcom), and the Share “plus” sessions.Trustworthiness criteria from Lincoln and Guba  guided tThis study was approved by the University of Utah’s institutional review board (00114642). Informed consent was obtained and participants were informed of their right to opt out at any point of the study. Gift cards were given at the beginning of the study and at day 10 and at the end of the study for US $30 at each time point totaling US $90 for the person with diabetes and US $90 for the care partner.Thematic analysis was used to develop major themes representative of the participants’ experiences during the DCES dyad sessions and postintervention interviews ,32. CodiTen dyads met the recruitment criteria, and 100% of them completed the 3 Share “plus” sessions. One dyad did not complete the postintervention interview because of time constraints but did complete the 3 sessions. Demographics of the participants with diabetes and their CPs are listed in Three themes developed representing experiences during the DCES dyad sessions include (1) independent appraisal of roles within dyads; (2) communication patterns; and (3) sharing and monitoring glucose data. During sessions with the DCES, the discussion focused on understanding the dyad’s baseline view of the role of the CP in supporting persons with diabetes and communication patterns. Working together with the dyad, the DCES was able to develop and tailor management strategies including how alarms were set and how the persons with diabetes and CP engaged with the CGM and Follow app.During the initial session with the DCES dyads were asked to consider how they viewed responsibility for diabetes management. Most persons with diabetes demonstrated a core sense of independence. For example, 1 person with diabetes stated, “It is my issue, but I know it affects others” , which the CP echoed by stating, “I think it's like it's her issue in the sense that only she can actively manage her diabetes. But there are lots of people who care about her well-being.”  While persons with diabetes expressed desire for self-control of management, CPs responses highlighted a desire to be in a supportive role.The DCES also encouraged dyads to consider engaging in teamwork. Yet, when asked about teamwork, persons with diabetes echoed similar thoughts regarding independence. One person with diabetes stated, “Well, I guess because I’m the one with diabetes and she’s not. She just has to put up with me having diabetes and how it impacts our lives” . While the CP shared:Regardless whether we’re together or apart, I still know basically how he’s doing and it affects me. I'm conscientious of what he should or shouldn’t be eating and watching what he does or how he's acting, especially if he is high or low, then it affects me in the middle of the night, the alarm goes off. And so if he's not sleeping, I'm not sleeping, and vice versa. So, I think it's very much a shared responsibility to make sure he's where he needs to be.CP #3, aged 60 yearsOverall, while the DCES introduced concepts of shared responsibility and teamwork, responses from persons with diabetes continued to center on the idea that disease management rested mainly with persons with diabetes, while CPs were more likely to be viewed as supportive partners only.During sessions with the DCES, communication strategies were presented and reviewed. Initially, most dyads reported feeling they had previously established good communication patterns prior to participation in the Share “plus” intervention. One person with diabetes shared a commonly echoed sentiment, “We communicate pretty well. It's not going to change” . Dyads entered the Share “plus” intervention with strong feelings of having established good communication patterns. However, throughout the sessions, half of the dyads reported experiences with the use of unsupportive communication during hypoglycemic or hyperglycemic events. One person with diabetes shared, “I know I snap at him (CP) enough that he probably knows when you know when that happens” .Moreover, communication occurred primarily around hypoglycemic events. Dyads shared how hypoglycemic events were seen as more important, requiring communication. One person with diabetes shared:The lows are a life, a life-threatening circumstance. The highs are not. But I would think so. Yeah, she's pretty much just minding your own business and keeping it to herself unless she feels that there’s a need to say something and the need would be a low alert, probably.Person with diabetes #7, aged 73 yearsPersons with diabetes recognized and appreciated CPs ability to communicate and support them during hypoglycemic events, while hyperglycemic events were seen as mainly the responsibility of the persons with diabetes. Dyads voiced concerns that there were limited options they could take when the persons with diabetes experienced hyperglycemia, which decreased communication around higher glucose trends. One CP shared:I don't think we're educated enough to …actually come up with a solution to the problem. There’s just something that happens that we have no …way of dealing with it other than just waiting it out.CP #9, aged 70 yearsCommunication patterns between dyads centered on reacting to hypoglycemia. While dyads often shared experiences with unsupportive communication, they overwhelmingly felt they had already established good communication patterns.Overall, persons with diabetes and CPs shared different approaches toward monitoring glucose trends at the start of the intervention. Persons with diabetes shared that they checked their levels multiple times throughout the day. One person with diabetes stated checking CGM data, “every hour or so” . In contrast, CPs reported a lower baseline engagement in monitoring glucose trends. One shared:I don't really look at it that often...(persons with diabetes) is…quite capable on her own of, you know, monitoring your blood sugars and looking at that type of data.CP #7, aged 73 yearsYet, when CPs actively engaged in glucose trends monitoring, they reported feeling increased peace. For example, one CP stated:When I check, when I check my phone and for some reason there's no, no data available, I find that stressful. So then it's like, hey, how come mine's not working? So, yeah, we definitely rely on it and it gives us peace of mind.CP #2, aged 61 yearsNonetheless, CP baseline engagement in glucose trend monitoring was mainly limited to alarm notification regarding hypoglycemic glucose trends. As part of the Share “plus” intervention, dyads were encouraged to discuss and set shared notification alerts regarding glucose levels. One person with diabetes shared:(CP) doesn't involve herself with the highs…As I said, they're transient, the lows are more important to me. The lows are a life-threatening circumstance. The highs are not.Person with diabetes #4, aged 66 yearsWhile dyads set similar limits for hypoglycemic alerts, CPs set alerts for hyperglycemic trends at levels higher compared to the persons with diabetes in order to avoid or limit the alerts they received.. Overall, while dyads addressed positive and negative communication patterns with the DCES, during postintervention interviews, participants identified that a change occurred from viewing diabetes management as an independent appraisal to feeling a sense of shared responsibility among the dyad. In addition, dyads addressed the positive influence the Share “plus” intervention had on promoting positive communication habits and monitoring glucose trends that emerged as part of the Share “plus” sessions.During the postintervention interviews, similar themes emerged, which included (1) shared responsibility; (2) communication patterns; and (3) sharing and monitoring glucose dataIn contrast to the initial session, dyads reported how the Share “plus” sessions helped increase their awareness and shared responsibility around diabetes management. One CP shared:It was almost like just confirming everything that we've done and that we established, you know, as a partner, as a, you know, husband and wife. And so, I would totally recommend (SHARE “plus”) for anybody. And I think if someone's not married and they have diabetes… that they should find that accountability partner and share that with that person… Because I think everybody should have the partnership to help them with (diabetes).CP #1, aged 60 yearsDyads shared how an increased sense of partnership emerged as they interacted with the DCES and each other. One person with diabetes shared:I think going through this class it kind of opened me up to the fact that because we're a partner, we're a team on this and it's just something we're facing together, it kind of made me think, “Okay” yeah.” I still primarily see it as because it's my body and my l’fe, it's primarily my issue, but it is a shared issue and I think the class kind of helped me open up to that a little bit more, so I think that's why the difference in the answer.Person with diabetes #3, aged 67 yearsCPs also described how they came to view the issue of shared responsibility through engagement with the diabetes educator session. For example, a CP stated, “Well, I just think being aware has made it really, really nice. We feel like we’re more in touch” . Through working with the DCES, dyads described becoming more open to sharing responsibility within the dyad and addressed the positive impact on the dyad relationship.Upon reflecting on involvement in the Share “plus” sessions, persons with diabetes reported conversations increased around strategies to promote better support and collaboration with their CPs. One person with diabetes shared, “well we've always communicated a lot, but we communicated more about my diabetes in general because of being involved in the study, which is good” . Another person with diabetes described increased CP involvement, which resulted in increased levels of support. He stated:I think we are sharing the burden of managing the lows better than what we were before. I think it helped us both realize this is something we both need to stay on top of.Person with diabetes #3, aged 66 yearsOverall, dyads reported that communication occurred in reaction to the current disease state of persons with diabetes as well as proactively considering how to increase the involvement and support of CPs.CPs described the communication benefits of the Share “plus” sessions as positive and reinforcing teamwork. One stated, “I don’t know it’s through this, or just because she’s mentioned it, of being a little more patient and kinder when dealing with this” . Another shared:I'm a scolder… Being demeaning anyway, so, yeah. I think the study was really helpful because it helped me realize that and it helped him realize that too that it is a partnership.CP #2, aged 60 yearsYet, dyads also shared a few instances of continuing unsupportive communication. Unsupportive communication resulted from long-established communication patterns present between partners. For example, one CP stated, “The high one , the one I know was an actual high, I let my alarm on my phone nag him. He kept telling me, “Just turn it off. Turn it off.” I said, “Nope” . Instead of engaging in communication regarding the hyperglycemic events in persons with diabetes, the CP relied on the alarm to alert and influence the behavior of persons with diabetes. Moreover, some CPs reported engaging in language that they knew was to be avoided, such as blaming. One CP shared:I guess I got upset, “Look, you’re falling, you know better than this. Why are you letting this fall?” ... I said “Why is this happening?” And I would assume that would be considered nagging, but, yeah.CP #4, aged 67 yearsAs dyads experienced frustration, habitual and unsupportive communication patterns, such as blaming, emerged. In contrast to the session with the DCES, in the postinterviews, dyads were more likely to recognize and report communication strategies that were viewed as unhelpful. Dyads demonstrated increased awareness of communication patterns that were negative and that might hinder successful partnerships.Most dyads expressed an increased dyad awareness of glucose levels that occurred as a result of engaging in the sessions with the DCES. For example, one person with diabetes said:I think (CP) feels good about being in the loop more than she was before, and it makes me feel better that she's aware, and (CP) can warn me or make sure I'm aware of where I am. So (Share “plus”) has been a positive. Because I've had diabetes for a long time.Person with diabetes #10, aged 79 yearsSimilarly, a CP described a feeling of closeness as a benefit of this awareness, “Well, I just think being aware has made it really, really nice. We feel like we’re more in touch” . Another benefit was an increase in empathy, “I think I become a little more patient and understanding, that I can see where things are going” .Importantly, dyads described that awareness increased feelings of safety. One person with diabetes shared, “Well what worked well was that it gave her (CP) peace of mind to know that she could have a window on things so to speak. And that made me feel good” . A CP described a sense of relief that hypo- and hyperglycemia was being prevented, “I was more aware because of the alarms, and his (persons with diabetes) alarms. So, I could go in and look at him, and talk to him, and see where he actually was” .During postsession interviews, dyads were asked to reflect on their experiences working with a DCES. Overwhelmingly, dyads shared positive experiences and addressed how regardless of their prior experiences and understanding about diabetes, they gained new information and felt supported. One CP shared:(DCES) took the time to explain things. You know, if I had a question, you know’ she wasn't in a rush to kind of get through the next, whatever, learning module, or however it was structured. And you know, I think, you know, created an atmosphere where it was comfortable for persons with diabetes and I to both share, you know? And so, you know, it was a good, positive thing.CP #5, aged 69 yearsPersons with diabetes agreed, sharing:(DCES)…knowledge base is huge, and she’s such a good teacher, and she can solve problems like nobody’s business. So, I mean, she can figure it out, and understands what’s going on, and she’s- and she listens, too.Person with diabetes #5, aged 68 yearsOverall, dyads shared how they gained new information and reported an increased sense of partnership. Moreover, dyads felt empowered and shared that communication, understanding regarding shared responsibility, and increased consideration of glucose trends were positively impacted by engaging in counseling sessions.In this study, dyads identified how working with a DCES addressed a missing aspect of their current health care management. Most reported how they felt more empowered as the DCES took time to provide education, address problems and questions regarding aspects such as diet or medications, and overall supported skill development in communication. Additionally, perceptions regarding independent appraisal changed to dyads reporting feeling a shared responsibility for management.Importantly, a key change in communication patterns emerged. Initially, dyads reported high initial confidence in their communication skills. Persons with diabetes asserted their ability to self-manage their diabetes, and CPs reported they were confident in relying on the self-management of persons with diabetes. However, during the DCES sessions, participants recognized their communication patterns and were able to identify patterns of negative behaviors and discussed during postsession interviews how they sought to change long-established communication patterns. Learning how to work together on supportive and unsupportive communication promoted a sense of teamwork for several of the dyads despite their long-term relationship and management of diabetes.Overall, dyads shared how despite experiencing T1D for several years, they were supported by the education received during the diabetes education sessions. This finding may be related to the long duration of T1D in this sample of older adults and a lack of referrals to diabetes care and education. The standard of care for referring persons with diabetes for diabetes care and education is at diagnosis, annually, or when not meeting treatment targets, when complicating factors develop , and when transitions in life and care occur . DespitePrior research considering patient education programs in diabetes have established that programs that promote self-reflection, identification of risk factors, and action planning may positively influence perceptions of self-efficacy and support health behavior changes -39. ThisDuring the Share “plus” intervention sessions, dyads demonstrated increased appreciation for diabetes management collaboration. At first, dyads often shared beliefs that persons with diabetes retained ultimate responsibility for the management of their diabetes and that CP’s role was to provide supportive actions. However, as dyads progressed through the sessions and provided poststudy feedback, it became clear that most realized how the CP could be more involved in diabetes management, without taking over. At the end of the 12-week study, dyads reported a sense of teamwork and a shared sense of responsibility. These results are consistent with the DCM that guided the Share “plus” intervention in that changes in dyadic appraisal accompanied strategies of collaboration.The involvement of CPs in diabetes management is especially important as persons with diabetes grow older because of the many diabetes age-related changes such as hypoglycemia unawareness and deleterious effects of hyperglycemia causing hospitalization . Both hyPersons with diabetes who receive training in data tracking and in the use of CGM have demonstrated improved outcomes -45. HoweThe limitations of this study include the lack of a diverse dyad sample. Moreover, further consideration of nonspousal CP relationships is necessary to explore the unique needs of other types of CP relationships. It is possible that this sample was biased as persons with diabetes and CP’s with poor relationships may not have volunteered for this study. Additionally, the findings are limited by the small sample size and the lack of racial or ethnic diversity. Further study is needed with a larger more diverse sample of dyads. Additionally, further study is needed regarding the quantitative understanding of the dyad relationship quality before and after the intervention in a larger sample.In conclusion, persons with diabetes and their CPs experienced improved communication skills and glucose management strategies after participating in the Share “plus” program. Families are often not included when addressing data-sharing with T1D despite the American Diabetes Association recommendation that CPs be involved in the care of older adults with diabetes . Additio


Atrial fibrillation (AF) and obesity affect over 60 and 650 million people, respectively.2) with AF.This study aimed to explore clinician practices, beliefs, and attitudes towards the use of direct oral anticoagulants (DOACs) in obese adults , hospital and academic pharmacists (n = 5), general practitioners (n = 2), a haematologist, a neurologist and a clinical pharmacologist participated. Interviews were on average 31 ± 9 min. Key themes identified were: This study highlights the complexity of decision-making for clinicians, due to the limited availability, reliability and awareness of evidence, the intrinsic complexity of the obese cohort and limited guidance from clinical guidelines. This highlights the urgent need for contemporary research to improve the quality of evidence to guide informed shared decision-making.The online version contains supplementary material available at 10.1007/s11096-023-01583-z. Beliefs and attitudes of a clinician may affect their decision-making process.Clinicians are faced with dealing with the intrinsic complexities of obesity with limited guidance provided by clinical guidelines.The increasing rate of individuals with concomitant obesity and AF highlights the urgency and need for improvement in the quality and availability of evidence to help guide clinicians in their decision-making.Atrial fibrillation (AF) and obesity are two of the most prevalent conditions in the world, affecting 60 and 650 million people globally, respectively , 2. It iObesity is associated with an increased rate of unplanned, cardiovascular-related, and all-cause hospital admissions in patients with AF . StudiesDirect oral anticoagulants (DOACs) have been preferred over warfarin by clinical guidelines, due to their superior safety profile. They also provide practical advantages such as no need for prothrombin time (PT) or international normalized ratio (INR) monitoring, and fewer drug interactions, thus resulting in an increasing utilisation in clinical practice . HoweverFurthermore, there is disagreement in pharmacokinetic reports of DOAC peak and trough plasma concentrations when comparing normal and obese adults –20. ThisClinicians formulate distinct intellectual responses to available scientific evidence, the prospect of emerging evidence, monitoring mechanisms and safety concerns, especially concerning the potential to cause harm and accountability for that harm . The inh2) with AF.This study aimed to explore clinician practices, beliefs, and attitudes towards the use of direct oral anticoagulants (DOACs) in obese adults  and Western Sydney University  Human Research Ethics Committee.One-to-one semi-structured interviews with open-ended questions were conducted to explore multidisciplinary clinicians’ perceptions . This study follows the standards for reporting qualitative research (SRQR) .Clinicians from across Australia with expertise in the use of DOACs in patients with AF, from either a medical, pharmacy or nursing background, were invited to participate via a combination of purposive and snowball sampling techniques.An initial list of clinicians that the researchers knew who had expertise on the topic, through their role in expert peak bodies and guideline development at a national and international level, were identified. Invitations for an interview sent via email included an outline of the proposed research. Clinicians who agreed were asked to sign and return the consent form, and a mutual time was confirmed to conduct one-on-one interviews via video conference. After the interview, clinicians were asked to recommend other clinicians for an interview, who had expertise on the topic. Interviews were recorded, and hand-written field notes were taken to supplement verbatim interview transcripts as interviews progressed. Clinicians could withdraw from the study at any point.Concurrent interviews and data analysis enabled efficient identification of the point of data saturation where no new themes emerged from ongoing interviews. Verbatim transcriptions were checked for validity against the audio and manually recorded data. Transcriptions were uploaded and managed using NVIVO software . Thematic analysis was conducted as per the Braun and Clarke (2015) framework . Each trA total of 16 clinicians; cardiologists (n = 5), hospital and academic pharmacists (n = 5), general practitioners (n = 2), a haematologist, a neurologist, a clinical pharmacologist, and a clinical nurse consultant (CNC), agreed to participate but the CNC withdrew on the premise of a lack of experience focused specifically on the intersection of obesity and AF. Nine (60%) were male and experience ranged from relatively junior (3 years of practice) to senior clinicians working in their specialty for up to 39 years (median: 22 years). Apart from one, all the clinicians were based in a metropolitan city; Sydney (53%), Melbourne (20%), Adelaide (13%) and Hobart (7%). Interviews lasted for 31 ± 9 min, and three key themes were identified: 1) health system factors in decision-making, 2) condition-related factors in decision-making, and 3) decision-making in the context of uncertainty, discussed in detail below.People who are right in the middle of Melbourne and Sydney, they just tend to refer a lot of people. And of course, you can’t afford to be like that in a region like ours, or if you’re more rurally based. I mean, you’d be waiting quite a long time to get access and care for the patients”- General Practitioner 01.“Clinicians from hospital settings questioned the need for urgency in treatment decisions when prescribing DOACs in the context of obesity. Some acknowledged the importance of considering obesity when decision-making, but their primary concern was related to the significance of incorporating obesity into decision-making during time-constrained, acute hospitalisations. Time was a barrier to effective decision-making and clinicians reported frequently having to overlook potentially influential factors because of the inability to obtain immediate results.Obesity is important, and everyone will acknowledge that, but at the end of the day, they’re managing what they have in front of them that is distressing symptomatically and clinically to the patient, and it’s impacting on them functionally, and that they’re easier things to deal with because you can initiate therapy for that. But dealing with obesity, that’s a whole other thing, and that can’t be addressed, by any practical means, like there’s nothing that you can practically do in hospital admission, that is going to have a significant impact on that patient’s obesity status. that’s still a long process… you’re limited to what you can do” – Pharmacist 01.“… Clinicians in rural general practice settings highlighted disparities within the healthcare system as barriers to decision-making. These included access and availability of health services and longer waiting times for specialist services in rural/regional areas when compared to metropolitan areas (i.e. Sydney or Melbourne), influencing delays in the initiation of anticoagulation.rare cohort”, with most expressing doubts related to dealing with obese AF patients.“I don’t know very many patients with AF who are in the morbidly obese category”- General Practitioner 02.… they are a rarer group, even though obesity is on the rise, but the morbidly obese patient is, a relatively smaller part of the population” – Pharmacist 01.“Some clinicians acknowledged the importance of taking into consideration the associated complexities of care for obese adults. This was generally discussed in terms of the multiple co-morbidities that exist in obese adults, often referred to as a “special population” or “cohort own on their own”. However, this also led to some clinicians questioning the importance of obesity in the overall management strategy, secondary to limitations on the practical implementation of dose adjustments and services provided.I wouldn’t worry about it. So, I worry much more about the renal side of things because the renal side of things can change so quickly… But when I’m thinking about body weight in the dosing of a DOAC, I think about it at one point in time, which is at the time when the initial prescription is made. At that point, I’ll consult and then pretty well, after that, I’ll just forget about it.”- Clinical Pharmacologist.“Clinicians emphasised the rarity of the obese AF patient population as a factor that leads them to question the clinical significance of obesity as part of their decision-making. Clinicians often referred to obese patients as a “Yeah, I’m aware of that as a guideline, and I really don’t like it because it’s not practical. There are a lot of patients around that weight, and they’re at really high risk, …. And we’re saying, Ah, sorry, we just haven’t done the studies. And so, you’ll have to go on warfarin. And then there are the issues of the blood test. So, I actually think it’s quite discriminatory, that we haven’t addressed this more seriously than, other than saying, ah, we don’t have the data, we do it. And the fact that we haven’t done it, I think is wrong” – Clinical Pharmacologist.“Clinicians stated the presence of a lag period from evidence generation to implementation or awareness of the evidence in practice, impacted decision-making.… guidelines are always a tricky thing and I always say, just remember the guidelines are just a guide and, almost as soon as they’re written, they’re out of date”- Pharmacist 01.“Treatment outcome appeared to be a primary concern for clinicians and the main factor taken into consideration when decision-making. Possibilities included the risk–benefit of anticoagulation, the clinical significance of obesity influencing DOAC effectiveness and known DOAC safety profiles. Concerns about bleeding risk with dose modification led to decision-making based on the first principal approach. This would vary depending on individual clinician beliefs regarding the quality of evidence, combined with past clinical and prescribing experience.Clinicians that have had a patient experience a negative effect will employ a more cautious approach, as opposed to some who hasn’t experienced this” – Pharmacist 01.“Whilst acknowledging the lack of evidence/data and limitations in predicting future outcomes, some clinicians believed that the “absence of data, is not the absence of effect”.We don’t have any randomized control data for DOACS against placebo or nothing. We do have a limited number of things that were, summarized, in a meta-analysis and on which basis the recommendations for giving, oral anticoagulation for non-valvular AF have been made. In those studies, which are much smaller than the DOAC studies in general, as far as I’m aware, there was no mention or sort of segregation of people who were morbidly obese. So, in other words, we don’t have data on morbidly obese people with Warfarin, but at least with Warfarin you are dealing with, trying to get people to a certain INR, not sort of give them a dose. I do not subscribe to the fact that the absence of data means the absence of effect”—Cardiologist 01.“Clinicians often stressed the importance of an integrated, multidisciplinary approach and shared decision-making to provide the optimal level of care for the patient. This included collaborating and relying on interprofessional expertise, acknowledging their respective professional scope of practice and ensuring continuity of care. Whilst accounting for preferences and past experiences of patients, considering current evidence and risk–benefit of being on a different agent, most often patients would trust the preference of the prescribing doctor.Most of the patients I see generally, I explain the process that we are going through. They’re generally pretty comfortable with the decisions I make. I used to give them a whole lot of information about the various options. And, in the end, they generally went with what I recommended anyway.” – Cardiologist 02.“Look… I’d probably consult, the ward pharmacist at a minimum. Get them to do that hard work and look up the dosing changes or which agent we should use, one preferred to the other. Ultimately I sort of make a decision based on what evidence they’ve shown” – Neurologist.“So, I actually have a chat with a pharmacist, because they’re always really good with giving advice. Then my understanding is that you have warfarin’s, like at the extremes of weight…. But warfarin is really difficult to, administer if you can’t test for it. And often, if someone’s morbidly obese, you can’t… Getting blood out of them is incredibly difficult. So, I would usually, under those circumstances, consult either any regulation specialist or hematology, that would be my threshold of saying, I really much prefer to use DOAC” – Clinical Pharmacologist.“Participants were concerned about the availability, reliability, and high level of uncertainty of evidence for DOAC use in obesity. They questioned the quality of obesity evidence due to limitations in clinical trial inclusion criteria, conflicting evidence, and variability in advice. The lack of direction from guidelines because of the unknowns in this aspect of practice was noted, often disliking the approaches taken as they felt ‘left in the dark’ and generally on their own to make decisions.This exploration of the practices, beliefs, and attitudes of clinicians concerning the use of DOACs in obese adults with AF highlights the spectrum of views about considering obesity as part of the clinician’s decision-making process. While almost all clinicians acknowledged the negative impacts of obesity on AF, only a few considered obesity as a key component in their decision-making for several reasons. Challenges within the healthcare system, the complexity of patients presenting conditions, the perceived rarity of the obese-AF population and the fact that decision-making takes place in the context of uncertainty were amplified by time limitations and geographical discrepancies in access to specialist healthcare advice and services.In acute care facilities where demand is high, the urgency of cases clinicians need to treat perpetually limits time. Referral to outpatient services , and follow-up appointments in primary care to ensure appropriate and adequate treatment are proposed solutions –39 but tCoupled with the health system factors, the clinician’s perception of the prevalence of the obese-AF population also greatly influenced the clinician’s view on the clinical significance of the effect of DOACs in the obese-AF population. However, this unexpected perception would oppose the current data from international registries and large population studies such as the ARIC, EORP-AF, CardioCHUVI-AF and Gulf SAFE registries which show that up to 46% of the AF population were obese , 45. FurDecision-making in the context of uncertain and often conflicting evidence was a major theme highlighted by participants due to either a lack of awareness of the latest evidence, personal conviction regarding the quality and reliability of data from trials and other studies, non-specificity in guidelines, and recognition that even the most contemporary guidelines are rapidly outdated as evidenced by the translational lag between evidence generation and implementation .This is further compounded by the conflicting findings in published systematic reviews on this topic , 49, and2), due to the extremely limited or absent clinical data [2 or > 120 kg due to the limited clinical data available [As such, both the International Society on Thrombosis and Haemostasis (ISTH) and the European Society of Cardiology (ESC) Working Group on Thrombosis have questioned the use of DOACs in extremely obese adults Below is the link to the electronic supplementary material.


In the second half of the nineteenth century, scientific and technological developments in surgery permitted safer procedures to be carried out. Theoretically, therefore, children whose lives would otherwise have been blighted by disease could be saved by timely operative interference. The reality was more complicated, however, as this article shows. Through an exploration of British and American surgical textbooks and an in-depth analysis of the child surgical patient base at one London general hospital, the tensions between the possibilities and the actualities of surgery on children can be examined for the first time. Hearing the child’s voice through case notes allows both a restoration of these complex patients to the history of medicine and a questioning of the wider application of science and technology to working-class bodies, situations, and environments which resist such treatment. Children in history are often viewed as victims, their voices and actions filtered always through adult perceptions.Although children were key beneficiaries of nineteenth-century surgical developments, they also complicated the ways in which surgeons operated. Surgery on children was predominantly for temporary conditions (accidents and emergencies) or long-term, chronic illness (such as tuberculosis). Urban working-class children were especially prone to both, given, as we shall see, their propinquity to the effects of industrialisation and related insanitary domestic surroundings.Children’s Voices from the Past (2019), material which includes artwork, photographs, objects, and spaces, alongside more familiar written sources.Patient records, alongside administrative documents, provide a rich but unmined vein of the kind of sources assessed in the recent edited collection Through the textbooks written by the earliest British and American specialists, we shall see, firstly, how the child surgical patient was constructed as unique, different, and most vitally, now – theoretically - permanently repairable by those operating in this field. Secondly, turning to patient case notes and examining quotidian life in a metropolitan general hospital in the early twentieth century, the ways in which surgeons dealt with actual child patients can be detailed. The focus here is on London’s Royal Free Hospital, a voluntary institution, as a case study.The twentieth century has been labelled by Hugh Cunningham as the “century of the child.”The Surgical Diseases of Children made clear, diametrically opposed, therefore, to the surgeon’s ideal of “big voice, big chest, big merciless hands.”Modern Treatise on Pediatric Surgery, American surgeon Samuel Walter Kelley encapsulated child patients in a single sentence which tussled with their contradictoriness. For Kelley, they displayed “speechlessness, fright, unruliness, lack of comprehension and compliance, and natural restlessness.”But it is vital to recognise that the child patient – even in theory – caused surgical anxieties. In 1912, for the American surgeon William Francis Campbell and his co-author, Le Grand Kerr, both the public and the medical profession had come to the recent realisation that “the care of children is a more or less complex problem.”The Surgical Diseases of Children appeared in 1860. Forster began with a chapter on anaesthetics, lauding the “great facilities which that agent [chloroform] gives to the operator, and the immense benefit to the patient.” Indeed, its introduction and the corresponding prevention of pain, claimed Forster, had encouraged “rapid strides” to be made in the “manipulative and operative branches” of children’s surgery. So helpful had it been and so safely administered, Forster reported that he now never performed “even the slightest operation without using it.”One thing that characterised all surgical textbooks focusing on the child, from the earliest onwards, was the benefit to be gained from “modern surgery.” Indeed, surgery on children was more possible precisely because of the developments in contemporary practice. In many ways, children’s “peculiar difficulties” could be distilled or even negated by the surgeon’s newly-acquired scientific aids. Diagnosis and examination would prove far easier through the use of anaesthesia, recommended for the quelling of a restless, squirming child even before any surgery had been considered. Even in the early twentieth century, those dealing with ear, nose, and throat procedures, where children formed a majority of the patient base, could look back with delight at what anaesthesia had enabled. For surgeons in this field, such as the American W.A. Martin, children’s inconsistency made treating them more complex; some were insensible to pain, and did not suffer any nervous disturbance, while others’ nervous shock was severe, terrorised into “naroxysm” by the approach of the surgeon. Anaesthetic changed practice, therefore, and levelled distinctions.Two more key aspects of the “surgical revolution” that were great boons for the children’s surgeon were asepsis and the development of X-ray technology. The former promoted conservatism and a move away from unacceptable, as Campbell and Kerr described it, “surgery in the dark.”As textbook analyses recognised, however, alongside the much-improved atmosphere and tools of the operating room, children were still fundamentally difficult patients because they did not “co-operate.” Even with aids to quieten and to keep children immobile, surgeons needed to resort to tricks and stratagems to hoodwink their patients, who did not give their own consent, of course, into compliance. Far from the pliancy and plasticity of childhood, what emerged from textbook explorations was that the theoretical child patient disrupted their own narratives of simplifying pre- and post-surgical processes. In 1912, Campbell and Kerr remarked:The surgeon must not expect the child to cooperate in the undertaking of a surgical procedure, whether it be an operation, a painful dressing, painful examination, or adjustment of injured parts. Therefore the administration of an anaesthetic is more frequently necessary than in adults. Children bear pain badly, and therefore surgical procedures of even the most ordinary kind are frequently cruel unless the child is protected by an anaesthetic. For instance, in the case of fractures, an accurate adjustment is often impossible without an anaesthetic, and in the matter of diagnosis alone the combined examination under anaesthesia and X-ray is desirable and often absolutely necessary. Even in what are commonly considered the minor surgical conditions, we are convinced that the shock offered to the child by the knowledge of what is taking place more than counterbalances the possible slightly depressing effect of the primary stage of ether anaesthesia.It was the very nature of the child and the “knowledge” possessed that displaced even the most careful, safe, and scientifically scrupulous procedures. In practice, children were far more attuned to what was going on around them in the surgical environment than theoretically imagined. Surgeons began to realise that anaesthesia often had to be given surreptitiously, rather than applied in the more confident, easy way stated in Forster’s 1860 volume. Owen, for example, recommended that the best method for administering chloroform was while the child was asleep.The Surgical Treatment of the Diseases of Infancy and Childhood, put it, “how much may be done by well-timed surgical interference to save life and limb in the affections of childhood.”What scientific and technological developments allowed in the second half of the nineteenth century, according to those who practised in this area, was more than simply surgery on children. Put succinctly, and this was something on which all agreed: surgery permitted normal life. From the earliest textbooks in the 1860s to the beginning of the twentieth century, children’s surgeons presented themselves as sparing pain and suffering for future adults, saving childhood and essentially protecting children in the way that wider social and cultural awareness of the child’s health and welfare had permitted. As British surgeon Timothy Holmes’s 1868 volume, more in early life than is now the practice, and so [we will] save many children from the painful consequences of growing up malformed during the whole period of childhood. One of the objects of this work is to prove that there are hardly any malformations, which are curable at all, that are not more curable in infancy than in after-life; and further, that far more of these affections are capable of relief from surgical treatment than is generally admitted.By 1912, Campbell and Kerr had the same positive message, buoyed by exactly that increased specialism indicated by Holmes nearly half-a-century before: “A deformity can often be corrected in early life which later is accompanied by secondary changes which can never be corrected.” “Alertness” to early recognition, diagnosis and treatment could only result in “fewer cripples in the world.”gratis medical and surgical treatment of the very first class, and such as none but the very rich can afford to pay for.” Indeed, she continued, “[t]hey are in this respect better off than the classes just above them in the social scale, who can only obtain such medical advice as can be had for a fee.”So far we have seen that child patients were both helped by contemporary alterations in surgical practice and also complicated that process through their very fibre as children. Already, without recourse to other sources, textbooks have given a glimpse into the complex ways in which children behaved. This next section will explore actual child cases through patient notes from the Royal Free Hospital between c.1890 and 1914. By doing so, and because of the richness of the sources, it will be possible to ascertain further how children obtained and reacted to surgical treatment. Key to this section will be an interrogation of the child as absent presence in the surgical encounter. Gillis has stated that the “sick child requires a third party to seek help and to bring the problem to the medical system,” the “pediatric clinical encounter is therefore initiated when a sick child is presented to a physician and the physician takes a history from the accompanying adult.”The administrative records of the Royal Free offer a fascinating glimpse into the fact that the seeking of treatment at hospitals was not limited to adults alone. Indeed, in the late 1890s and into the twentieth century, the reports of the Almoner indicated that children were also availing themselves of hospital attention and privileges.Textbooks described surgery on children as tripartite. As Johnson put it in 1860, childhood surgery was for congenital malformations, accidents, and surgical diseases proper which arose from the previous two or other causes.Surgery on children was predominantly, therefore, either for emergencies or acquired conditions, both exacerbated by early-twentieth century urban society. The rest of this article will explore, in turn, the acute and chronic patients who formed most children on surgical wards. In doing so, case notes will be mined for a dual purpose: to examine the child surgical patients’ active agency in their treatment, as well as understanding more about the experiences children had in hospital. Key to developing a more complex picture of child patients is recognising that they did not always come straight from their homes with parents or guardians. Statistics explain why the hospital had so many problems with injured children turning up alone at “Gate,” the nickname for casualty. In 1911, for example, 173 children were killed in the London streets and 5,075 injured, and the problem was worsening with increasingly mechanised transport and roads tightly crammed with a variety of vehicles. Of the total number of accidents in the metropolis, 34% were child fatalities; three-quarters were boys.Even for accidents within and on the periphery of the domestic confines, very often, and especially in the case of burns, no adult was present to explain the circumstances. In February 1907, three-year old Arthur Jones was brought to hospital by the police, as he had been found completely alone in a room and on fire. He lived for about twelve hours.Parents were not always present either when notes were taken.Some parents simply did not speak English, and this was especially the case at the RFH as the hospital was very near the metropolitan Italian quarter. In these instances, children were required to narrate their histories, even if they were six, as in the case of Michael Tortora in January 1910. While the notetaker remarked that he was the only one able to explain his situation, so it could not be lucid or reflect upon the past, it was also noted that he spoke English very well and his description was simple, clear, and he placed his accident in time and space.While Gillis has concentrated on the ways in which physicians interpreted the mother’s assessment, because she was the one most involved in the clinical encounter and the one so described in paediatric textbooks, many children attended hospital with their fathers.While parents, guardians or others could and did explain the child’s condition or history if they were present or cognisant of it, doing so was much more difficult when the senses or less visibly external conditions were involved. Ear, nose, and throat procedures or ophthalmic ones, for example, necessitated an engagement with the patient themselves, no matter how youthful they were. Children necessarily complicated hearing and eyesight tests. Two of Dodd’s three-year-old patients, Augustus Morgan and Leslie Welch, were frustrating because the former’s vision could not be tested accurately because of his age, while the latter was described as “not very reliable.”As the hospital’s statistics indicated, the number of accidents and emergencies was matched by patients afflicted with chronic “surgical diseases,” who were often transferred from other institutions or convalescent homes, another form of bypassing the parent-surgeon dynamic. Thirteen-year-old Rose Everton, for example, who was suffering from multiple tubercular abscesses even gave her address as a sanatorium where she had been for years.Alongside emergencies, the impact that suffering from a chronic “surgical disease” had upon the child patient is more than apparent from case notes. And they also make it evident the cost, both in financial and in childhood years, to patient and family. Berry remarked that mechanical means could be purchased for eight years at a cost of £200 – an impossible expenditure for a working-class household - to render Ivor Hobbs’s leg straight. Although he had been spontaneously cured from tuberculosis, without surgical interference, he was now badly deformed.Although they did not pay for treatment in voluntary hospitals, patients did pay for surgical instruments. Sometimes they were assisted in their purchases by the Almoner, but some could not afford even a small payment. There was “not enough money raised” to buy a spinal jacket needed for seven-year-old “stunted and dwarf-like” James Jeffries, for example, who smiled but maintained enigmatic silence while in the RFH. He had been suffering from spinal caries since the age of two; his parents had also “left off” bringing him to hospital.One of the most extreme cases, Emma Barwick, was seen as a child on eight occasions, each time for tuberculosis, between 1904 when she was nine and 1909 when she was fourteen.In 1909, at fourteen she was back in hospital having been there “repeatedly,” as her notes remarked. She now also had spinal caries, confirmed by X-ray, in addition to her tuberculous thumb and wrist. Her address was a sanatorium in Midhurst, West Sussex. Her condition was considered “quite good” by Mr. Berry, but nothing further could be done for her except to inject tuberculin and encourage her to lie on her back which, she noted, gave her no pain. There were those who received continuity of care, as Emma Barwick’s five years under Berry made clear, but this did not mean that life was any better for the child afflicted with tuberculosis of the bone. For children such as James Jeffries, Florence Vince and, especially, Emma Barwick, childhood was a round of hospital visits, punctuated by surgical procedures and convalescence. It involved being still and quiet, never going to school or playing with friends, and regularly in considerable pain, if they survived. Although surgical textbooks stressed that it was a battle against time to rescue childhood, some children could not be rescued. It was not the idyll dreamt of by those who envisaged surgery’s impact on a child’s life, and it was no wonder that parents “left off” inflicting restrictive treatment on their children.Child patients were also immobilised by technology in the hospital, or at least that was the intention. As we have already seen, textbooks extolled the wonders of anaesthesia as an agent of control. Coupled with developments in radiography, children’s injuries and especially joint diseases were pinpointed with more accuracy. It undoubtedly permitted a level of examination difficult to achieve before, and in many ways a more precise and helpful diagnosis. Even if they did not always follow advice, adults could be clearly instructed on what to do, whereas in practice, it took more time and effort to engage a child to achieve the best possible results. Multiple X-rays needed to be taken for some restless children; this could lead to poor treatment rather than improved, as bad exposures meant problems were missed and deformities could result. Eight-year-old Thomas Jones’s separated epiphyses had been located because of an X-ray, which could penetrate beneath his swollen arm. This did not prevent, however, a complete loss of sensation. It was hardly a wonder that he was “very low-spirited.” After other attempts, including triple surgery, electricity, and massage, normal sensation had still not returned when he was discharged for the second time after five months in hospital.But it was not just new technologies that were utilised to prevent pain or keep children quiet. Frequently, immobilisation was achieved through simple methods, such as tying arms or legs to the bed. As well as treatment for those suffering from tubercular joints, enforced stillness was employed for the naughty, destructive, or simply fidgety, regardless of age. Ten-year-old Edith Holdgate, who had suffered from a tubercular hip for most of her life, was admitted to the RFH from the Alexandra Hospital to have her leg, which was shortened and malformed after years of treatment, straightened. This necessitated her being tied to the bed after several procedures to prevent her twisting her pelvis and adducting her leg.Manual of Surgical Diagnosis (1904) for diagnostic purposes or allaying pain or spasm “during the instrumental examination of mucous cavities.”Cocaine or eucaine as local anaesthetising agents were particularly recommended in the early twentieth century. Berry remarked on their value in his own Although children did not consent to surgery, they could affect outcomes or delay treatment. Parents may have removed children from hospital when they did not agree to procedures, but children also objected. The most dramatic incident occurred with the escape of a twelve-year-old boy from Dodd’s care in May 1900. After eight days, he had obviously had enough.On the other hand, over-reactions, naturally very frequent in screaming babies such as Albert Boakes, were also to be seen in older children. Ten-year-old Florence Payne needed to “learn to be tractable,” a process which took nineteen days, before Berry would operate on her. The staff dismissed mental deficiency and found her only hysterical; she was described as excessively excitable, nervous, screaming, crying, and cowering with fright on the very smallest provocation.By considering textbook children alongside their actual counterparts, it has been possible for the first time to place child surgical patients back into the history of medicine. Case notes have permitted the “hearing” of individuals’ voices, a greater understanding of how and why children were in hospital, and a focus on the ways in which they were treated. Surgeons were aided by advances in science and technology, but the child patient also disrupted and affected the most “modern” of treatments. In practice, and a fundamental finding for the history of surgery more generally in this article, is that such theoretical leaps and bounds stuttered when applied to real patients, a difficulty highlighted particularly by children. The patients explored here have leapt from the case notes as individuals narrating their own histories. Six-year-old Mark Keen pronounced kerb as “‘kerve’” and keenly described his previous hospital stay for ‘“Poisoned Blood.’” Robert Buckingham, aged five, called for “‘Mummy’” over and over again when he had been run over. Edward Patrick, eight, remarked “‘Oh my head!’” after his accident. Such examples provide the child surgical patient with a voice, but also allow the historian to interrogate fruitfully and ultimately reposition this most “passive” and “trusting” of patients.